Disability Dictionary

Definitions listed are not medical diagnosis of a health problem or disease, nor do they represent a medical plan or instructions. The information and resources provided here are for educational purposes. All definitions updated on August, 2005, unless otherwise noted.


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Adjustment Disorder

An adjustment disorder is a reaction to a stressful event or situation, usually beginning within three months and ending within six months of the event's end. Adjustment disorders are very common and can affect anyone, regardless of gender, age, race, or lifestyle. They are seen as a normal reaction to a specific stress. An adjustment disorder occurs when a person can't cope with a stressful event and develops emotional or behavioral symptoms.


A stressful event might be:

  • A regional, group, or individual event, such as a flood, a sport team loss, or a fire
  • A time of year or holiday
  • A continuous situation, such as a substance abuser in the home
  • A developmental event, such as moving household

Symptoms may include:

  • Hopelessness, depression, sadness and crying
  • Anxiety and worry
  • Headaches or stomachaches
  • Withdrawal and inhibition
  • Conduct disturbances
  • Vandalism , truancy, fighting, or other destructive acts

An adjustment disorder differs from Post-Traumatic Stress Disorder (PTSD), which usually occurs in reaction to a life threatening event, with more severe, lasting symptoms. The usual treatment is short term psychotherapy (counseling) focused on resolving the immediate problem. Family therapy or a support group may also be helpful. Most people recover completely.


See also: Post Traumatic Stress Disorder


For more information:


American Academy of Child and Adolescent Psychiatry

202-966-7300

www.aacap.org


National Institute of Mental Health

301-443-4513

www.nimh.nih.gov




AIDS

What is AIDS?

Acquired Immunodeficiency Syndrome (AIDS) is a condition that gradually destroys the body's immune defense system and makes the body vulnerable to opportunistic diseases. It is caused by infection with the Human Immunodeficiency Virus (HIV). After HIV invades the body, it lives and multiplies in the white blood cells, which are the cells that protect the body from disease. As the virus multiplies, it damages or kills these and other cells, and the body becomes prey to a wide range of disease-causing microbes.


When HIV has destroyed enough white blood cells, the body is no longer able to fight off many infections. When there are very few white cells left, particularly of the kind called CD4+, and one or more serious diseases start occurring, the HIV-infected person has AIDS.


Babies with AIDS get frequent infections, such as meningitis, fail to gain weight or grow at an appropriate weight, and frequently have diarrhea. Early diagnosis of HIV and frequent follow-up can help prevent or reduce the severity of some infections. In 1998, the CDC recommended that all infants diagnosed with HIV be treated with a combination of three HIV-fighting drugs. This therapy slows the progress of the disease and improves quality of life and survival in infected babies and children.


See also: HIV

For more information:


Elizabeth Glaser Pediatric AIDS Foundation

888-499-HOPE or 888-499-4673

Email: info@pedaids.org

www.pedaids.org


Women, Children & HIV

www.womenchildrenhiv.org


AIDS Info

800-HIV-0440 or 800-448-0440

Email: contactus@aidsinfo.nih.gov

www.aidsinfo.nih.gov




Allergies

Allergies are the sixth leading cause of chronic disease in the U.S. About one out of every five children suffers from allergies. Allergies are not always taken seriously; some people consider them a nuisance, when in fact they are a serious disorder, especially in children. More than 40 percent of children with allergies limit their activities because of them. Allergies, if improperly managed, can lead to fatigue, irritability, loss of concentration, lost school days, hospitalization, and in some cases, death.


Symptoms in children can include runny noses, ear infections, eczema, chronic sickness, and recurrent stomach aches. In infants, look for colic, formula intolerance, frequent spitting up and low-grade fevers. Allergies can be diagnosed by a visit to a doctor's office, where several types of test may be administered. Treatment includes taking daily medications, avoiding or reducing exposure to "triggers" that induce allergic symptoms, and, for children, learning to deal with peer pressure.


The most common allergies are to certain types of foods, dust mites, mold and mildew, tree and grass pollens, and animal dander. In schools, children may be exposed to furry pets, mold, cigarette smoke from the teachers' lounge, grass being mowed, and "trigger" foods such as peanut butter. Parents must work with school administrators and teachers before the school year begins to reduce their child's exposure to these allergens.


For more information:


Asthma and Allergy Foundation of America

800-727-8462

Email: info@aafa.org

www.aafa.org


American Academy of Allergy, Asthma and Immunology

414-272-6071

Email: info@aaaai.org

www.aaaai.org


Food Allergy & Anaphylaxis Network

800-929-4040

Email: faan@foodallergy.org

www.foodallergy.org




Amputee

About one in every 2000 new born babies will have some form of a limb deficiency; it may be absent parts of fingers or toes, complete absence of all four limbs or something in between. Another larger group of children lose limbs in accidents, especially to lawn mowers, trains, all terrain vehicles, and motorcycles; or to disease, including cancer.


Care for a person who is missing a limb will depend greatly upon his or her overall strength.  Children who are candidates for prostheses (artificial limbs) will need to make several visits to a prosthetic facility to obtain a correctly fitting device.  Physical/occupational training or gait therapy may be needed to gain independence.  In addition, assistive devices are available to help children missing one or both arms cope with the chores of daily living.  Some examples are lifts for getting into and out of vehicles or beds and motorized wheelchairs. Amputees whose health does not permit prosthesis use may need more assistance with mobility.


For more information:


Amputee Coalition of America

National Limb Loss Information Center

888-267-5669

www.amputee-coalition.org


International Child Amputee Network (I-CAN)

www.child-amputee.net


National Amputation Foundation

516- 887-3600

Email: amps7@aol.com

www.nationalamputation.org




Anemia / Blood Disorder

Anemia is not a disease; it is a symptom of various diseases. Anemia is a reduction in the number of circulating red blood cells, the amount of hemoglobin, or the volume of packed red cells. There are many specific diagnoses of anemia including:

  • Aplastic Anemia
  • Cooley's Anemia
  • Fanconi Anemia
  • Sickle Cell Anemia

Some forms of anemia, such as Sickle Cell, Fanconi, and Cooley's Anemia, are genetic. Anemia also results from iron deficiency, nutritional deficiency, exposure to radiation and other toxins, and severe infection.


Symptoms of various forms of anemia can include pain episodes, organ damage, extreme fatigue, and frequent infections. Treatment for anemia must be specific for the cause, and can include blood transfusions, chelation therapy, antibiotics, androgens (male hormones), bone marrow transplants, and other therapies.


For more information:


Aplastic Anemia and MDS International Foundation, Inc.

800-747-2820

Email: help@aamds.org

www.aamds.org


Cooley's Anemia Foundation

800-522-7222

Email: info@coleysanemia.org

www.thalassemia.org


Fanconi Anemia Research Fund, Inc.

800-828-4891

Email: info@fanconi.org

www.fanconi.org


Center for Sickle Cell Disease, Howard University

202-806-7930


Sickle Cell Disease Association of America, Inc.

800-421-8453

Email: scdaa@sicklecelldisease.org

www.sicklecelldisease.org


Family Village

www.familyvillage.wisc.edu




Anorexia

Eating disorders are serious emotional and physical problems that include extreme emotions, attitudes, and behaviors around weight and food issues. The three most common eating disorders are Anorexia Nervosa, Bulimia Nervosa, and Binge Eating Disorder, also known as Compulsive Overeating.


In Anorexia Nervosa, a preoccupation with dieting and thinness leads to self-starvation and excessive weight loss. Symptoms include intense fear of weight gain, feeling fat despite dramatic weight loss, extreme concern with body weight and shape, and loss of menstrual periods. Untreated, anorexia can be fatal. Like other eating disorders, Anorexia typically begins during adolescence, and affects more girls than boys.


Bulimia is characterized by periods of binge eating followed by purging (self-induced vomiting, laxative abuse, or over-exercising), while a compulsive overeater binges but does not purge.


Causes of eating disorders are complex and are not completely understood, and may include:

  • Psychological factors, such as low self-esteem
  • Interpersonal factors, such as troubled family relationships or history of abuse
  • Social factors, such as cultural norms that glorify thinness
  • Biological or biochemical factors

All eating disorders require professional help. The most effective treatment is therapy or psychological counseling coupled with careful attention to medical and nutritional needs.


For more information:


National Eating Disorders Association

206-382-3587

Email: info@nationaleatingdisorders.org

www.nationaleatingdisorders.org


National Association of Anorexia Nervosa and Associated Disorders

847-831-3438

www.anad.org




Aphasia

Aphasia is a language disorder that results from damage to the portion of the brain that is dominant for language. It also may be developmental (i.e. due to conditions or diseases occurring before or after birth). For most people, this is the left side of the brain. Aphasia usually occurs suddenly, frequently the result of a stroke or head injury, but it may also develop slowly as in the case of a brain tumor. The disorder may involve aspects of language comprehension and/or expression.


Aphasia treatment strives to improve an individual's ability to communicate. The most effective treatment begins early in the recovery process. Major factors that influence the amount of improvement include the cause of the brain damage, the area of the brain that was damaged, the extent of the brain injury, and the age and health of the patient. Additional factors include motivation, handedness, and educational level.


Even with therapy, individuals with severe aphasia may have difficulty communicating even the simplest ideas and needs. Many professionals who work with aphasic patients believe that it is easier for younger individuals to recover language skills than it is for older individuals.


For more information:


National Institute on Deafness and Other Communications Disorders

800-241-1044

TTY: 800-241-1055

Email: nidcdinfo@nidcd.nih.gov

www.nidcd.nih.gov/index.asp


National Aphasia Association (NAA)

800-922-4622

Email: responsecenter@aphasia.org

www.aphasia.org




Asperger's Syndrome

Asperger's Syndrome is a milder variant of Autistic Disorder. Both are part of the larger category of disorders called Autistic Spectrum Disorders or Pervasive Developmental Disorders.


Asperger's is characterized by social isolation and eccentric behavior. There are impairments in two-sided social interaction and non-verbal communication. People with Asperger's may have few facial expressions, and may have difficulty comprehending the facial expressions of others. They are, however, able to learn social skills through repetition and practice. Though grammatical, their speech is peculiar. Clumsiness is prominent both in their articulation and gross motor behavior. People with Asperger's Syndrome usually have excellent rote memory and become intensely interested in one or two subjects. Often this preoccupation leads to a successful career in a specific area.


Children with Asperger's Syndrome respond best when they have a regular, organized routine. In school, they will have difficulty understanding abstract language, and some modifications and adaptations will be needed so that the student can grasp what the teacher is trying to communicate. Many of the weaknesses can be remediated with therapy aimed at teaching social and pragmatic skills. Anxiety leading to significant rigidity can be also treated medically.


See also: Autism Spectrum Disorder


For more information:


Autism Society of America

800-3AUTISM or 800-328-8476

www.autism-society.org


National Center on Birth Defects and Developmental Disabilities

Email: bddi@cdc.gov

www.cdc.gov/ncbddd/dd


National Institute of Mental Health

866-615-6464

Email: nimhinfo@nih.gov

www.nimh.nih.gov


Yale Developmental Disabilities Clinic

www.med.yale.edu/chldstdy/autism/aspergers.html




Asthma

Asthma, characterized by coughing, chest tightness, shortness of breath, and wheezing, is the most common serious chronic disease of childhood. It is one of the leading causes of school absenteeism, and results in lost nights of sleep and disruption of family routines. For children, asthma symptoms can interfere with school and extracurricular activities; children may try to limit or avoid physical activities to prevent coughing or wheezing. Asthma can be managed, but parents, teachers and health care providers all need to be involved.


In infants and children, asthma may appear as cough, rapid or noisy breathing in and out, or chest congestion, without the other symptoms seen in adults. The most common cause of asthma is allergy: 90 percent of children who have asthma are allergic. Management includes protecting children from irritants such as tobacco smoke, which causes chronic irritation of the airways, and other allergens. Doctors may prescribe specific medications and devices, including peak flow meters to measure breathing, metered dose inhalers, nebulizers, dry powder inhalers, or oral medications. Parents and children must learn how to use these correctly. Today with appropriate preventative treatments, many persons with asthma can lead normal, full lives.


For more information:


American Academy of Allergy Asthma & Immunology (AAAAI)

800-822-2762

Email: info@aaai.org

www.aaaai.org


Allergy and Asthma Network/ Mothers of Asthmatics

800-878-4403

www.aanma.org


American Lung Association

800-LUNG-USA or 800-5864-872

www.lungusa.org




Attachment Disorder

An attachment disorder is a condition in which individuals have difficulty forming loving, lasting, intimate relationships. As normal attachment develops, behaviors including crying, smiling, clinging, rooting, and vocalization are the infant's way of making contact. When the caregiver responds, meeting the baby's needs the baby begins to develop trust.


The development of healthy attachments can be disrupted by abuse, neglect, abandonment, multiple changes in caregivers, or the caregiver's physical or emotional unavailability. Without attachment, infants can become insecure, lose interest in the world, or even die. Attachment is not an "all or nothing" proposition, but runs along a continuum between secure and unattached. Many children in foster care have attachment problems, but only a small number are truly unattached. Common behaviors in children without healthy attachments include:

  • Distancing from adults
  • Poor of eye contact
  • Inappropriate clinginess or independence
  • Delayed conscience development
  • Indiscriminate affection with strangers
  • Superficial charm
  • Fear and rage appropriate for a younger-age child
  • Poor response to traditional parenting, discipline or therapy
  • Poor cause and effect thinking
  • Inability to delay gratification

Therapy and parenting using the elements of basic attachment have been found to be the most helpful. These elements include nurturing touch, eye contact, and physical and emotional closeness. With treatment, children are able to work through early trauma, grief and loss, and learn to accept loving, nurturing care from parents.


See also: Reactive Attachment Disorder


For more information:


Association for Treatment and Training in the Attachment of Children

803-251-0120

Email: info@attach.org

www.attach.org




Attention Deficit Disorder

Up to 3.5 million children have an Attention Deficit Disorder (ADD). It is a leading cause of school failure and under-achievement.


ADD is a neurobiologically based disability, characterized by developmentally inappropriate attention skills, impulsivity, and, in some cases, hyperactivity. ADD is often accompanied by poor self-esteem and behavioral difficulties. Characteristics of children with ADD can include:

  • Fidgeting with hands or feet
  • Difficult remaining seated
  • Difficulty awaiting turns in games
  • Difficulty following through on instructions
  • Shifting from one uncompleted task to another
  • Difficulty playing quietly
  • Interrupting conversations
  • Appearing not to listen
  • Doing things that are dangerous without thinking about the consequences

ADD students have a greater likelihood of repeating a grade, dropping out of school, under-achieving academically, and having social and emotional difficulties. Making and keeping friends is a difficult task for children with ADD.


There is no "cure" for ADD, but parents can help their child by learning as much as possible about ADD; seeking professional evaluation and treatment; advocating for their child; seeking parent training. Parent training will help a parent to provide clear, consistent expectations and directions; set up an effective discipline system; create a behavior modification plan; assist a child with social issues; and identify the child's strengths. Many medications are extremely helpful but a doctor will need to be consulted to begin treatment and monitor the child.


For more information:


Children and Adults with Attention Deficit Disorder (CHADD)

800-233-4050

www.chadd.org


Attention Deficit Disorder Association

847-432-ADDA or 847-432-2332

www.add.org


National Center on Birth Defects and Developmental Disabilities

Email: bddi@cdc.gov

www.cdc.gov/ncbddd/dd


National Institute of Mental Health

www.nimh.nih.gov/health/publications/attention-deficit-hyperactivity-disorder/complete-index.shtml


American Academy of Pediatrics

www.aap.org




Autism Spectrum Disorder

Autism Spectrum Disorder (ASD) consists of a range of developmental disabilities that typically appear during the first three years of life. The result of a neurological disorder that affects functioning of the brain, autism and its associated disorders occur in approximately 15 of every 10,000 individuals and is four times more prevalent in boys than in girls.


Autism interferes with the normal development of the brain in the areas of reasoning, social interaction and communication skills. Children and adults with autism typically have deficiencies in verbal and non-verbal communication skills, social interactions and leisure or play activities. They may exhibit repeated body movements (hand flapping, rocking), unusual responses to people or attachments to objects and resist changes in routines. In some cases aggressive or self-injurious behavior may be present.


Autism is referred to as a spectrum disorder, meaning that the symptoms and characteristics of autism can be present in a wide variety of combinations from mild to severe. Autism is defined by a certain set of behaviors and children and adults can exhibit any combination of the behaviors in any degree of severity. Thus, two children with autism can behave very differently.


ASD includes other disorders such as Pervasive Developmental Disorder (PPD), Asperger’s, and high-functioning autism. Some children with ASD may also have other conditions, such as Down Syndrome or mental retardation.


For more information:


Autism Society of America

800-3AUTISM or 800-328-8476

www.autism-society.org


National Institute of Mental Health

www.nimh.nih.gov/publicat/autism.cfm


National Center on Birth Defects and Developmental Disabilities

Email: bddi@cdc.gov

www.cdc.gov/ncbddd/dd




Behavior Problems

If a child is described as having behavior problems, it is important to learn more about the exact nature of the behaviors in order to plan appropriate interventions. The term "behavior problems" is too vague to be useful in understanding a particular child. A child's behavior problems may be a result of experiences of trauma, abuse or sexual abuse, or mental retardation. Behavior that is difficult to manage may also be associated with emotional problems or behavioral disorders, such as attention deficit disorder, conduct disorder, oppositional defiant disorder, or attachment disorder.


While some desirable behavior patterns occur as part of a child's normal development, and only need to be noticed and reinforced by adults, others need to be taught, such as sharing, good manners, empathy, study habits, and behaving in accordance with values. A parent should be familiar with normal development, and the usual stages through which children progress. A pediatrician or family doctor can be a good resource for this information.


As a general rule, it is time to consult a mental health provider if your child's behavior is age-inappropriate, an on-going pattern, and interfering with his or her learning, growth, and social development. Treatment for behavior problems can take many forms. In most cases, behavioral, family, or school-based therapy programs should be considered before the use of medications.


For more information:


American Psychological Association

800-374-2721

www.apa.org


Medline Plus – Child Development

www.nlm.nih.gov/medlineplus/childdevelopment.html




Bipolar Disorder

Bipolar disorder or manic-depression is a serious but treatable illness marked by extreme changes in mood, energy, and behavior. Once thought to be rare in early childhood, bipolar disorder is now recognized and treated in young children. Symptoms may be present from infancy or early childhood (early-onset), or emerge in adolescence or young adulthood.


The illness looks different in children from the way it appears in teens and adults. Children usually have an ongoing, continuous mixture of mania (extreme high) and depression, with rapid, severe, cycling between moods and few clear periods of wellness between episodes. Symptoms may include:

  • Chronic irritability
  • Depression
  • Rapidly changing moods lasting a few hours to a few days
  • Explosive, lengthy, and often destructive rages
  • Defiance of authority
  • Hyperactivity, agitation, and distractibility

In adolescents, bipolar disorder more closely resembles the illness in adults, with periods of mania, including elevated mood, decreased need for sleep, increased rapid talking, and unrealistic positive self-image and periods of depression with persistent sadness, crying, loss of enjoyment in favorite activities, thoughts of death or suicide, and major change in eating or sleeping.


Bipolar disorder is the result of a biochemical imbalance in the brain that alters a person's moods. Having a birth parent or sibling with the illness increases the risk for a child. Although there is no known cure, it can be effectively treated with medication, psychotherapy, and parenting techniques. With early intervention and appropriate treatment, many children achieve significant improvement and learn how to manage their symptoms as they grow older.


For more information:


Child and Adolescent Bipolar Foundation

847-256-8525

Email: cabf@bpkids.org

www.bpkids.org




Blindness - Correctable

Common childhood eye problems include: Strabismus (eyes that are misaligned), which results in double vision because the eyes are unable to focus together; and amblyopia (lazy eye) which is often a result of strabismus. When a child can't coordinate eye movement in both eyes, he or she will begin to use the stronger, less-affected eye. This leads to vision loss in the underutilized eye. Patching, other medical treatments and surgery may be necessary.


Low vision is a condition that significantly impairs a child's functioning, and cannot be adequately corrected with medical or surgical techniques, therapy, conventional eyewear or contact lenses. It is often a loss of sharpness, but may also be a loss of field of vision, light sensitivity, distorted vision or loss of contrast. It may occur as a result of birth defects, injury, or a complication of disease.


Low vision services do not cure the problem, but use the remaining vision to its fullest potential. While laser treatment, medication, or surgery may be necessary, doctors may also prescribe eyewear, filters, magnifiers, adaptive equipment, independent living aids, and training.


For more information:


National Association for the Visually Handicapped

212-889-3141

Email: staff@navh.org

www.navh.org


National Association for Parents of Children with Visual Impairments

800-562-6265

www.spedex.com/napvi


Lighthouse International

800-829-0500

www.lighthouse.org


The Low Vision Gateway

www.lowvision.org




Blindness - Permanent

There are many things that cause blindness. Glaucoma, cataracts, and diabetic retinopathy are the three most common causes of blindness today. In children, the most common causes of blindness are traumas, prematurity and infectious diseases. Blind children without other disabilities in public schools are often in regular classrooms. These students might work some of the time with a special teacher. Some children with blindness have multiple disabilities and may benefit from more intensive special education services.


Technology has made many useful products available to the blind. In schools, some examples are text-reading computers and books on tape. Some make daily life easier (such as a Braille watch), while others have opened up employment opportunities. It is important for blind children to learn that blindness will not prevent them from living happy and normal lives. With proper training, knowledge and opportunities, blind people can be productive, first-class citizens.


For more information:


National Federation of the Blind

410-659-9314

www.nfb.org


American Council of the Blind

800-424-8666

www.acb.org


American Foundation for the Blind

800-AFB-LINE or 800-232-5463

Email: abfinfo@afb.net

www.afb.org


Lighthouse International

800-829-0500

www.lighthouse.org




Borderline Personality Disorder

Borderline Personality Disorder (BPD) is defined as a pervasive a pattern of instability of interpersonal relationships, self-image, and affects (moods), and marked impulsivity beginning by early adulthood and present in a variety of contexts. People with this disorder often see others in "all or nothing" terms, and attitudes toward family and loved ones may suddenly shift from great admiration and love to intense anger and dislike. Other symptoms may include:

  • Frantic efforts to avoid abandonment
  • Impulsivity in potentially self-damaging areas
  • Suicidal or self-mutilating behavior, gestures or threats
  • Chronic feelings of emptiness
  • Inappropriate, intense anger or difficulty controlling anger
  • Paranoia or severe dissociation from reality

BPD always co-exists with other illnesses, which may include post traumatic stress disorder, eating disorders, substance abuse, attention deficit disorder or others. The cause of BPD is unknown, but recent research shows that genetic factors play a significant role. BPD affects 2% of the general population, and 75% of those affected are female.


While BPD is a serious illness and considered difficult to treat by some mental health professionals, group and individual psychotherapy can be effective and antipsychotic or antidepressant drugs may also be used. A new treatment, dialectical behavior therapy, has been developed specifically to treat this illness. Many people with BPD report success with proper treatment.


For more information:


National Institute of Mental Health

301-443-4513

Email: nimhinfo@nih.gov

www.nimh.nih.gov


National Education Alliance for Borderline Personality Disorder

www.borderlinepersonalitydisorder.com


National Mental Health Association

800-969-NMHA or 800-969-6642

www.nmha.org/infoctr/factsheets/borderline.cfm




Cancer

Cancer is a group of more than 100 different diseases. Cancer occurs when cells become abnormal and keep dividing and forming more cells without control or order. In children, some cancers are genetic while others may be inherited. Over 8,000 children a year are diagnosed with cancer in the U.S. Because of significant advances in therapy, more than 70 percent of these children will survive five years or more.


The types of cancer that occur in children vary greatly from those seen in adults. Leukemias, brain and other nervous system tumors, lymphomas, bone cancers, soft tissue sarcomas, kidney, eye and adrenal gland cancers are the most common in children.


Childhood cancers can be treated by chemotherapy, surgery, radiation, or a combination of these therapies. Because children are growing, their cells may be affected by the treatments for cancer. Thus, some survivors develop second cancers later in life or may have developmental issues, such as brain damage, from radiation therapy. Children with cancer and their families have special needs that can be best met by children's cancer centers. Psychologists, social workers, child life specialists, nutritionists, physical therapists and educators are available to support the entire family.


For more information:


Candlelighters Childhood Cancer Foundation

800-366-CCCF or 800-366-2223

Email: staff@candlelighters.org

www.candlelighters.org


American Cancer Society

800-ACS-2345 or 800-227-2345

www.cancer.org


National Cancer Institute

800-4CANCER or 800-422-6237

www.cancer.gov


University of Pennsylvania Cancer Center: OncoLink

www.oncolink.upenn.edu




Central Auditory Processing Disorder

Central auditory processing has been described as "how well the ear talks to the brain, and how well the brain understands what the ear tells it. In central auditory processing disorder, also known as auditory processing disorder, the processing or interpretation of information is affected. The cause is often unknown. It may be a sign of this speech and language disorder if a child:

  • Talks or likes TV louder than others
  • Interprets words too literally
  • Often needs remarks repeated or asks many extra questions
  • Has difficulty sounding out words, confuses similar sounding words
  • Has difficulty following directions in a series
  • Memorizes poorly
  • Hears better when watching the speaker

Children with suspected problems should be evaluated by both an audiologist (who diagnoses hearing disorders) and a speech-language pathologist (who diagnoses and treats language disorders). Treatment can focus on training auditory and listening skills as well as teaching functional language skills (vocabulary, grammar, conversation, etc.) Changes encouraged in school and in the home often include changes in seating (away from distractions), setting (structuring the environment) and speaking (to the child in more effective ways). If problems are identified early, children are able to acquire adaptive strategies to compensate.


For more information:


National Institute on Deafness and Other Communication Disorders

301-496-7243

TTY: 301-402-0252

Email: nidcdinfo@nidcd.nih.gov

www.nidcd.nih.gov


American Speech-Language-Hearing Association

800-638-8255

Email: actioncenter@asha.org

www.asha.org


LD Online

Email: ldonline@weta.com

www.ldonline.org




Cerebral Palsy

Cerebral Palsy (CP) is a group of chronic conditions affecting body movements and muscle coordination. CP is caused by insults occurring before, during or after delivery. It occurs as the end result of one of many different diseases affecting the brain. Due to damage to one or more parts of the brain that control movement, an affected child cannot move his or her muscles normally. While symptoms range from mild to severe, the condition does not get worse as the child gets older. With treatment, most children may significantly improve their abilities.


Many children with cerebral palsy have other problems as well, including seizures, vision, hearing and speech problems, learning disabilities, and mental retardation. These require treatment as well.


There are three main types: spastic (stiff and difficult movement); athetoid (involuntary and uncontrolled movement); and ataxic (disturbed sense of balance and depth perception). To treat cerebral palsy, a team of health care professionals works with the child and family to create a treatment plan, which may include physical therapy, braces, drugs to ease spasticity, surgery, speech therapy and more.


For more information:


United Cerebral Palsy Association, Inc

800-872-5827

TTY: 202-973-7197

www.ucpa.org


March of Dimes

888-MODIMES or 888-663-4637

www.modimes.org


National Institute of Neurological Disorders and Stroke

www.ninds.nih.gov/health_and_medical/disorders/cerebral_palsy.htm


National Center for Birth Defects and Developmental Disabilities

Email: bddi@cdc.gov

www.cdc.gov/ncbddd/dd




Cleft palate/lip

Cleft lip and cleft palate comprise the fourth most common birth defect in the United States. One of every 700 newborns is affected by cleft lip and/or cleft palate. Cleft lip and cleft palate are congenital defects, or birth defects, which occur very early in pregnancy. The majority of clefts appear to be due to a combination of genetics and environmental factors. It may be an isolated defect or part of a larger syndrome with other defects such as mental retardation, exophacial overriding disease, or chromosomal defect.


A cleft lip is a separation of the two sides of the lip. The separation often includes the bones of the upper jaw and/or upper gum. A cleft palate is an opening in the roof of the mouth in which the two sides of the palate did not fuse, or join together, as the unborn baby was developing.


Cleft lip and cleft palate can occur on one side (unilateral), or on both sides (bilateral). Because the lip and the palate develop separately, it is possible for the child to have a cleft lip, a cleft palate, or both cleft lip and cleft palate.


A child born with a cleft frequently requires several different types of services, e.g., surgery, dental/orthodontic care, and speech therapy, all of which need to be provided in a coordinated manner over a period of years. This coordinated care is provided by interdisciplinary cleft palate/craniofacial teams comprised of professionals from a variety of health care disciplines who work together on the child's total treatment.


For more information:


American Cleft Palate - Craniofacial Association (ACPA)

The Cleft Palate Foundation

800-24-CLEFT

Email: info@cleftline.org

www.cleftline.org


Wide Smiles

209-942-2812

Email: josmiles@yahoo.com

www.widesmiles.org


SMILES

Email: smiles@cleft.org

www.cleft.org




Conduct Disorder

Conduct disorders are a complicated group of behavioral and emotional problems in children and adolescents. These children have great difficulty following rules and behaving in a socially acceptable way. They exhibit repetitive and persistent patterns of behavior in which the rights of others or basic social rules are violated. The child or adolescent usually exhibits these behavior patterns in different settings-at home, at school, and in social situations. More common among boys than girls, conduct disorder can begin before age 10, and is caused by both genetic and environmental factors. Signs and symptoms include:

  • Physically and verbally aggressive behavior that causes or threatens harm to others
  • Non-aggressive conduct causing property damage, such as fire setting
  • Deceitfulness or theft
  • Serious rule violations, such as school truancy

The most successful treatment approaches intervene as early as possible, are structured and intensive, and address the multiple contexts in which the problem behavior appears, including family, school, and community. They may involve psychotherapy or behavior therapy focused on building skills such as anger management. Medication alone is not a sufficient treatment.


Treatment, which means establishing new attitudes and behavior patterns, takes time. However, recent research has shown that most children and adolescents with conduct disorder do not grow up to have behavioral problems or problems with the law as adults and most do well both socially and occupationally.


For more information:


National Mental Health Association

800-969-NMHA or 800-969-6642

TTY: 800-433-5959

www.nmha.org/index.cfm


American Academy of Child & Adolescent Psychiatry

202-966-7300

www.aacap.org




Craniofacial Anomalies

CA large number of conditions can affect the shape of a child's head and face. When a baby is born the skull bone is really a collection of many smaller bones which abut one another at sites known as sutures. The most noticeable is the anterior fontanel or "soft spot" where four bones meet. As the brain grows, the sutures allow for rapid, symmetrical expansion. If one or more sutures close too early the brain is forced to grow in a different direction where the bones are not resisting growth. This condition is known as craniosynostosis or craniostenosis.


Many syndromes, often either hereditary or the result of a gene mutation, can cause craniofacial anomalies. Other physical or developmental problems also occur with these syndromes. Surgery, including skull re-shaping, plastic surgery of the nose, cheeks, ears or eyelids, jaw surgery, etc., is usually required to correct these problems. If untreated, pressure could build up in the head, causing brain injury; in addition, the child would have a marked facial deformity that she would have to live with for her entire life.


For more information:


AboutFace USA

888-486-1209

www.aboutfaceusa.org


Children's Craniofacial Association (CCA)

800-535-3643

Email: contactcca@ccakids.com

www.ccakids.com


National Foundation for Facial Reconstruction

www.nffr.org


National Craniofacial Association (FACES)

800-3FACES3 or 800-332-2373

www.faces-cranio.org




Crohn's Disease

Crohn's disease is a chronic inflammatory disease of the intestines. It primarily causes ulcerations in the small and large intestines, but can affect the digestive system anywhere between the mouth and the anus. The disease is found in equal frequency in men and women, and usually affects young patients in their teens or early twenties.


Symptoms range from mild to severe, and include persistent diarrhea; abdominal pain; rectal bleeding; fever; weight loss; skin or eye irritations; and delayed growth in children. The most common complication is blockage of the intestine. Blockage occurs because the disease tends to thicken the intestinal wall with swelling and scar tissue, narrowing the passage. Crohn's disease may also cause sores, or ulcers, that tunnel through the affected area into surrounding tissues. Treatments include medications such as sulfasalazine and corticosteroids; nutrition supplements; and surgery, which may be needed if drugs do not control symptoms or if complications arise.


Despite the need to take medication for long periods of time and occasional hospitalizations, most people with Crohn's disease are able to hold jobs, raise families, and function successfully at home and in society.


For more information:


Crohn's and Colitis Foundation of America (CCFA)

800-932-2423

Email: info@ccfa.org

www.ccfa.org




Cystic Fibrosis

Cystic Fibrosis (CF) is an inherited genetic disease affecting approximately 30,000 children and adults in the U.S. CF causes the body to produce abnormally thick, sticky mucus, due to the faulty transport of sodium and chloride (salt) within cells lining organs such as the pancreas and lungs to their outer surface. This also prevents enzymes from reaching the intestines to help break down and digest food.


The most common symptoms of Cystic Fibrosis are very salty-tasting skin; persistent coughing, wheezing or pneumonia; excessive appetite but poor weight gain; and bulky stools. Treatment depends upon the stage of the disease and which organs are involved. Chest physical therapy, antibiotics, and nutrition supplements are commonly used. Many people with CF require frequent hospitalizations. The life expectancy of people with CF used to be very short; 30 years ago the median life expectancy was about 8 years. Today, thanks to medical advances, the median life expectancy is just under 30 years and increasing. In addition, parents can also be tested for the most common genes causing CF.


For more information:


Cystic Fibrosis Foundation

800-344-4823

Email: info@cff.org

www.cff.org


Medline Plus - Cystic Fibrosis

www.nlm.nih.gov/medlineplus/cysticfibrosis.html




Deaf - Profound Hearing Loss

About one in every 1,000 infants is born deaf or with profound hearing loss. Hearing loss may be hereditary or caused by problems during pregnancy or delivery, exposure to certain drugs, injury, and illness. The loss may be caused by a defect of the outer or middle ear but more often damage exists in the inner ear.


Prognosis depends on factors such as the age at diagnosis, early interventions and associated defects. Conductive hearing loss, caused by problems with the external or middle ear conducting sound to the inner ear, can often be corrected by medication or surgery. If not, a child can usually do well with a hearing aid. Sensorineural hearing loss, caused by problems in the auditory nerve, inner ear (cochlea), or brain, can often be helped with a combination of hearing aid, cochlear implant, communication therapies, and proper educational opportunities. There are a variety of hearing aids that are prescribed based on the particular type of hearing loss.


Children can be taught to communicate either via a speech and lip-reading approach or via sign language. Some children learn both methods. The earlier deafness is identified, the better chances a child has to acquire language, whether spoken or signed.


For more information:


American Society for Deaf Children

800-942-2732

Email: asdc@deafchildren.org

www.deafchildren.org


National Association of the Deaf

301-587-1788

TTY: 301-587-1789

Email: nadinfo@nad.org

www.nad.org


National Institute on Deafness and Other Communication Disorders (NIDCD)

Email: nidcdinfo@nidcd.nih.gov

www.nidcd.nih.gov


Center for Hearing and Communication

Email: postmaster@lhh.org

www.lhh.org


Deaf Adoption News Service

www.erols.com/berke/deafchildren.html




Depression

Depression in children and adolescents can lead to school failure, alcohol and drug abuse, or even suicide. About 5% of children and adolescents in the general population experience depression.


Possible causes of depression in children include the loss of, or rejection by, a caretaker, and genetic or hereditary vulnerability. Adopted children have experienced losses of birth parents, often siblings, and sometimes culture. Children under stress, or who have attentional, learning or conduct disorders are at a higher risk. A young person who has experienced one major episode of depression is more at risk for others.


The behavior of depressed children and teens differs from that of depressed adults. Because the youngster may not always seem sad, parents and teachers may not realize that troublesome behavior is a sign of depression. Other signs may include:

  • Persistent sadness, crying
  • Inability to enjoy favorite activities
  • Low energy, persistent boredom
  • Frequent school absences or poor performance
  • Major changes in eating and sleeping patterns
  • Difficulty with relationships, social isolation
  • Poor-self esteem or guilt
  • Thoughts or expressions of death, suicide, or self-destructive behavior

Depression is a real illness that requires professional help, but is treatable. A child and adolescent psychiatrist or other mental health professional should be consulted. Treatment may include individual and family therapy, and the use of anti-depressant medication. It is important to seek professional assistance when considering medication as some anti-depression medications have been deemed dangerous for children and adolescents. With treatment, most young people start to feel better within a few weeks.


For more information:


American Academy of Child and Adolescent Psychiatry

202-966-7300

www.aacap.org


National Mental Health Association

800-969-NMHA or 800-969-6642

TTY: 800-433-5959

www.nmha.org/index.cfm


American Psychological Association

800-374-2721

TDD/TTY: 202-336-6123

www.apa.org




Developmental Articulation Disorder

Speech and language problems are often the earliest indicators of a learning disability. A child's communication is considered delayed when the child is noticeably behind peers in acquiring speech or language skills. Articulation disorders are problems with the way sounds are formed.


Children with developmental articulation disorder may have trouble controlling their rate of speech. Or they may lag behind playmates in learning to make speech sounds. Early speech articulation deficits may be indications of problems being able to hear individual sounds in words. Some warning signs are a child's having difficulty recognizing and producing rhyming words, identifying words that begin and end with the same sound, or identifying what sound a word begins and ends with. Inability to hear sounds in words is the best predictor of problems learning early reading skills. Institutionalized children or severely neglected children may also be behind in speech simply due to a lack of people speaking to them.


Developmental articulation disorders are common. They appear in at least 10% of children younger than age 8. Fortunately, articulation disorders are often outgrown. But it is important to remember that even if a child learns to produce speech sounds correctly, an underlying processing problem may remain. If a child does have a problem, intervention should begin early. Speech-language pathologists are able to diagnose and work with young children having speech and/or language problems. They can usually be successfully treated with speech therapy.


For more information:


Learning Disabilities Association of America

412-341-1515

www.ldanatl.org


American Speech-Language-Hearing Association

800-638-8255

Email: actioncenter@asha.org

www.asha.org




Developmental Disabilities

A developmental disability is a severe, chronic disability that is due to a mental or physical impairment or combination of mental or physical impairments; is manifested before the person reaches age 22; and is likely to continue indefinitely. Children under age five are said to have developmental disabilities when they have substantial developmental delays or congenital or acquired conditions that would result in developmental disabilities if the proper services are not provided. Developmental disabilities result in substantial limitations in three or more of the following areas of major life activity:

  • Self-care
  • Receptive and expressive language
  • Learning
  • Mobility
  • Self-direction
  • Capacity for independent living
  • Economic self-sufficiency

A person with developmental disabilities will need a combination of special, interdisciplinary, or generic care, treatment, or other services that are individually planned and coordinated.


Examples of developmental disabilities include children and adults with a wide range of diagnoses, including mental retardation, cerebral palsy, autism, spinal cord injury and severe head injury, so long as the condition began before age 22 and therefore affected the person's development.


For more information:


National Center on Birth Defects & Developmental Disabilities

Email: bddi@cdc.gov

www.cdc.gov/ncbddd/index.html


Medline Plus – Developmental Disabilities

800-638-8255

www.nlm.nih.gov/medlineplus/developmentaldisabilities.html




Developmental Writing Disorder

Dysgraphia is another name for developmental writing disorder, a type of learning disorder classified as an academic skill disorder. Other diagnoses in this category include dyslexia (developmental reading disorder) and dyscalculia (developmental arithmetic disorder).


Dysgraphia, involves difficulties with physical writing, spelling, or putting thoughts on paper. A few people with this disorder lack fine-motor coordination. But in most cases, experts believe, dysgraphia involves a dysfunction in the inner workings of the brain system that translate mental into written language. The three broad categories are dyslexic, motor, and spatial dysgraphia. Spelling, spontaneous writing, copied writing, and drawing are affected differently in each.


A neurological disorder, dysgraphia is diagnosed by testing by a qualified clinician, who assesses the process, including posture, pencil grip, and other factors, as well as the finished project. Common warning signs are:

  • Problems with steps of a written document (such as making an outline)
  • Bad or illegible handwriting
  • Awkward pencil grip
  • Avoiding tasks that involve writing
  • Minimal development of ideas on paper, in contrast to ability to discuss them verbally
  • Inconsistency in the way the same words or letters look
  • Difficulty writing within margins or lines, inconsistent spacing between words

Prevention, remediation and accommodation are all important parts of the treatment for dysgraphia. Alternative methods in the classroom, such as oral reports, using a tape recorder, and using a computer can be helpful.


For more information:


National Center for Learning Disabilities

888-575-7373

www.ld.org


International Dyslexia Association

800-ABCD-123 or 800-222-3123

www.interdys.org




Diabetes

Diabetes is a group of diseases in which the body cannot use food for energy correctly. There are two major types of diabetes: Type 1 (Juvenile) and Type 2 (Adult Onset). Type 1 is caused by the destruction of the cells in the pancreas that produce insulin, while in Type 2, the body produces insulin but does not use it effectively. Children with Type 1 diabetes must take several insulin injections daily to live.


Children with diabetes must be monitored rigorously, balancing insulin injections with food intake, exercise regimen, and a healthy diet to avoid or ameliorate complications such as blindness, kidney failure and circulation problems. Stress, hormonal changes, periods of growth, illness and fatigue all can adversely affect a child's blood sugar.


For more information:


American Diabetes Association (ADA)

800-342-2383

Email: askada@diabetes.org

www.diabetes.org


Juvenile Diabetes Research Foundation, International

800-533-2873

Email: info@jdf.org

www.jdf.org


Health Line Type 2 Diabetes Center

www.healthline.com/health/type-2-diabetes


National Diabetes Information Clearinghouse

www.diabetes.niddk.nih.gov




Down Syndrome

Down syndrome is the most common chromosomal condition associated with mental retardation. It is caused by a child's having an extra chromosome #21. Some cases of this genetic mutation are inherited from either parent but most are the result of spontaneous mutation. This extra chromosome changes the orderly development of the body and brain. Down syndrome is usually confirmed by a chromosome test administered shortly after birth.


Approximately 4000 children with Down syndrome are born in the U.S. each year, or 1 in every 800 to 1000 live births. Children with Down syndrome are usually smaller than their peers, with delayed physical, intellectual, motor and language development. A distinct physical appearance includes poor muscle tone; slanting eyes with folds of skin at the inner corners; short hands, feet, neck and ears; and hyperflexibility.


Children with Down syndrome also frequently have specific health-related problems, which may include a lowered resistance to infection, respiratory problems, visual problems, hearing loss, heart defects, and a tendency to obesity as they grow older. Most children with Down syndrome function in the mild to moderate range of mental retardation. However, some are not mentally retarded, but in the borderline to low average range, while others are severely mentally retarded. Research shows that intervention and stimulation in the early years improves the child's chances of developing to fullest potential. Continuing education, positive public attitudes, and a caring, enriching home environment are also important.


For more information:


National Down Syndrome Congress

800-232-6372

Email: info@ndscenter.org

www.ndsccenter.org


National Down Syndrome Society

800-221-4602

Email: info@ndss.org

www.dyscalculia.org


The Arc

301-565-3842

Email: info@thearc.org

www.thearc.org




Drug Exposed

How does drug use during pregnancy affect newborns?

Babies exposed to heroin, methadone, amphetamines, PCP, marijuana, or cocaine during pregnancy are often born too soon or too small, putting them at increased risk of life-long disabilities including mental retardation, cerebral palsy, and visual and hearing impairment. Some drug-exposed infants may have permanent neurological damage at birth due to intra-uterine strokes or to the associated prematurity.


Babies whose mothers used drugs during pregnancy often score poorly on tests given at birth to assess the newborn's physical condition and overall responsiveness. They do not do as well as unexposed babies on measures of motor ability and reflexes, attention and mood control, and they appear less likely to respond to a human face or voice.


Babies exposed to drugs before birth also may have respiratory and neurological problems, including seizures, during the newborn period. Beginning at birth, these babies go through something similar to "withdrawal" from the drug. Many are very jittery and irritable, and startle and cry at the gentlest touch or sound. Consequently, these babies are very difficult to comfort and often are described as withdrawn or unresponsive. Other drug-exposed babies "turn off" surrounding stimuli by going into a deep sleep for most of the day. In either case, the baby's reaction to drugs can make bonding between mother and baby difficult -- and bonding is critical to a baby's emotional development.


It is important to note, however, that babies who have few or no problems identified at birth can do very well when given appropriate supports and educational services.


For more information:


Motherisk

877-327-4636

www.motherisk.org


March of Dimes

888-MODIMES or 888-663-4637

www.modimes.org


National Institute on Drug Abuse

301-443-1124

Email: information@lists.nida.nih.gov

www.drugabuse.gov




Dwarfism

Dwarfism is defined as a condition in which the person reaches an adult height of 4'10" or less due to either medical or genetic conditions. The most frequently diagnosed cause is achondroplasia, a genetic condition that results in disproportionately short arms and legs. Spondylo-epiphyseal dysplasia (SED) and diastrophic dysplasia are two other common types of dwarfism. These genetic conditions are essentially untreatable, although other problems that are associated with them, such as orthopedic complications, may need to be treated with surgery.


Proportionate dwarfism, a short-stature condition that results in the arms, legs, trunk and head being the same size in relation to each other as in an average-size person, is often the result of a hormone deficiency and may be treated medically, for instance with human growth hormone.


The medical prognosis of a person with short stature varies from condition to condition, and with the severity, but the overwhelming majority enjoy normal intelligence, normal life span, and reasonably good health.


For more information:


Human Growth Foundation (HGF)

800-451-6434

www.hgfound.org


Little People of America

888-LPA-2001 or 888-572-2001

Email: info@lpaonline.org

www.lpaonline.org




Dyscalculia

Dyscalculia, or developmental arithmetic disorder, is a type of learning disability classified as an academic skills disorder. Other diagnoses in this category include dyslexia (developmental reading disorder), and dysgraphia (developmental writing disorder).


Dyscalculia is a disability involving math skills. Identified through testing, It is a lifelong condition which affects about 5% of elementary school age children in the United States, and can be identified by testing. Dyscalculia can be quantitative (difficulty counting and calculating), qualitative (difficulty conceptualizing math processes), and/or intermediate (inability to work with numbers and symbols). Symptoms include:

  • Normal or advanced language and other skills
  • Inconsistent results in basic arithmetic processes
  • Number substitutions, reversals, transpositions, additions and omissions
  • Difficulty using money, making change
  • Difficulty with math concepts, rules, formulas
  • Poor sense of direction, trouble reading maps
  • Difficulty telling time, reading schedules
  • Difficulty with sequencing, including keeping track of past & future events
  • Difficulty following directions and keeping score in sports

Math aptitude can be inherited or an inborn disposition. But a majority of dyscalculia cases among individuals with average or above average intelligence are caused by failure to acquire math fundamentals in school. Experts believe that even the worst math performances can be improved considerably. Compensatory strategies can be taught by a skilled teacher, taking into account the child's cognitive level, learning style, and math readiness skills.


For more information:


National Center for Learning Disabilities

888-575-7373

www.ld.org


Dyscalculia.org

www.dyscalculia.org




Dyslexia

Dyslexia, or developmental reading disorder, is a type of learning disability classified as an academic skills disorder. Other diagnoses in this category include dyscalculia (developmental arithmetic disorder), and dysgraphia (developmental writing disorder). Dyslexia is a language based disability causing trouble understanding words, sentences or paragraphs, affecting both oral and written language. Causes of dyslexia are not clear, but it is not due to a lack of intelligence or lack of desire to learn. It has been found to run in families, and in people of all backgrounds and intellectual levels. Of the 15-20% of the population with reading disabilities, 85% have dyslexia.


Some children with dyslexia have problems with early reading, writing, and spelling, while others experience trouble later, when more complex language skills are needed. Some also have trouble with organization, comprehending spoken language or expressing themselves. Dyslexia can be diagnosed by a formal evaluation, conducted by school or outside specialists.


While dyslexia is a life-long condition, with early identification and help from a teacher, tutor or therapist trained in a multisensory (using all the senses) structured language approach, children with dyslexia can learn to read and write well, and employ strategies to compensate for their difficulties.


For more information:


International Dyslexia Association

800-ABCD-123 or 800-222-3123

www.interdys.org


National Center for Learning Disabilities

888-575-7373

www.ld.org


LD Online

Email: ldonline@weta.com

www.ldonline.org




Dysthymia

Dysthymia, also known as dysthymic disorder, is a mood disorder characterized by an overwhelming, chronic state of depression. The child or adolescent is depressed for most of the day, on most days, and symptoms continue for at least a year. The average duration of a dysthymic period is about 4 years. Some children are depressed so long that they do not realize their mood is unusual. Symptoms may include:

  • Persistent feelings of sadness, hopelessness, or helplessness
  • Poor appetite or overeating
  • Disturbances in sleep patterns
  • Low self-esteem
  • Feelings of inadequacy or excessive guilt
  • Loss of interest in usual activities
  • Difficulty with relationships

Dysthymia occurs in less than 2% of children, and less than 8% of adolescents, and affects females more often than males, especially during adolescence. The precise cause of dysthymia, like the causes of other forms of depression, is not yet known. Dysthymia is associated with an increased risk for major depression, if a child or adolescent does not receive treatment.


A child psychiatrist or other mental health professional usually diagnoses dysthymia, following a comprehensive psychiatric evaluation. Treatment may include antidepressant medications and therapy. Because episodes of dysthymia are long lasting, long term continued treatment may help to prevent reoccurrence of symptoms. All treatment for a dysthymic disorder should occur in a warm, supporting and caring environment. About 80% of youngsters who receive treatment function better and enjoy themselves in ways that they weren't able to before.


See also: Depression


For more information:


American Academy of Child and Adolescent Psychiatry

202-966-7300

www.aacap.org


Center for Mental Health Services

800-789-2647

www.mentalhealth.org




Dystonia

Dystonia is a neurological movement disorder characterized by involuntary muscle spasms that force certain parts of the body into abnormal, sometimes painful movements or postures. It is often accompanied by a twisting or jerking motion. It can affect virtually any part of the body and involve any voluntary muscle. It is the third most common movement disorder after Parkinson's Disease and tremor, affecting more than 300,000 people in North America. Its cause may be genetic or the result of neonatal or toxic insults.


Other functions such as cognition, strength, and the senses, including vision and hearing are normal. While dystonia is not fatal, it is a chronic disorder and prognosis is difficult to predict.


Treatment for dystonia is designed to help lessen the symptoms of spasms, pain, and disturbed postures and functions. The approach for treatment of dystonia is usually three-tiered: oral medications, botulinum toxin injections, and surgery. These therapies may be used alone or in combination. Physical and speech therapy may also be used.


For more information:


Dystonia Medical Research Foundation

800-377-DYST or 800-377-3978

Email: dystonia@dystonia-foundation.org

www.dystonia-foundation.org




Emotional Problems

Emotional problems in children and teenagers can range from mild to severe. When a parent suspects an emotional problem, the first step is an open, honest talk with the child about feelings, if this is appropriate to the child's age. Parents may also want to consult with the child's doctor, teachers, clergy, or other adults the child knows. At least one in 20 children and adolescents may have a serious emotional disturbance that severely disrupts life at home, school, and in the community. Signs in a young child may be:

  • A marked drop in school performance
  • Persistent nightmares
  • Frequent unexplainable temper tantrums
  • Persistent disobedience or aggression
  • Refusal to participate in usual activities

In older children and adolescents, warning signs may include:

  • Depression
  • Abuse of alcohol and/or drugs
  • Sexual acting out
  • Self-injury, self destructive behavior, or threats of harm to others
  • Changes in eating and sleeping patterns
  • Problems in relationships

Your child's pediatrician can rule out possible physical causes for problems and help you locate a mental health professional. Since adopted children often have emotional problems specifically related to adoption issues, parents should seek a counselor or therapist who is knowledgeable about adoption. Once an appropriate diagnosis is made, treatment may include psychotherapy, behavior therapy, or medication.


For more information:


American Academy of Child and Adolescent Psychiatry

202-966-7300

www.aacap.org


American Psychological Association

800-374-2721

www.apa.org


National Institute of Mental Health

301-443-4513

TTY: 301-443-8431

www.nimh.nih.gov




Encopresis

Encopresis, a lack of bowel control in a child that has been previously toilet trained, is a chronic, complex but solvable problem, found more often in boys than girls. It can have either physical or emotional causes. For example, some children use encopresis as a way of distancing themselves from adults and preventing interactions. Physical causes include constipation and fecal impaction. Treatment in these cases focuses on preventing constipation through diet (high fiber, adequate fluids) and encouraging good bowel habits.


Emotional causes may be related to a lack of toilet training or opposition to toilet training, stressful life events such as divorce, moves, family illness, or fear of a painful bowel movement. Behavior modification and a reward system encouraging proper toilet habits, and psychological counseling are used to treat this problem.


For more information:


American Academy of Child and Adolescent Psychiatry

202-966-7300

www.aacap.org


American Academy of Pediatrics

847-434-4000

Email: kidsdocs@aap.org

www.aap.org




Enuresis

Enuresis or incontinence--lack of bladder control--is a fact for many children with disabilities. It is also commonly referred to as “bed wetting” and is often associated with particular disabilities including spina bifida, neuromuscular diseases including muscular dystrophy and cerebral palsy, nervous system disorders, brain damage, spinal cord injuries and inflammation of the bladder or urethra. In some cases it can be hereditary. Children with incontinence face both physical and emotional challenges. A pediatrician or urologist can recommend treatment options and psychological counseling may be advisable as it may be a sign of sexual abuse.


In a healthy child, enuresis usually does not indicate a physical or an emotional problem. Causes may be due to a delay in the development of bladder muscles or a response to stress. Treatments include behavior modification techniques, such as rewards for remaining dry at night; limiting fluids by medical advice of a doctor; waking the child periodically during the night; and, in some cases, medication. For some children, medication can help while for others it may not. Patience and support by family members is essential.


For more information:


National Kidney Foundation

888-622-9010

www.kidney.org




Epilepsy

Epilepsy is a disorder of the brain, characterized by seizures that occur when a wave of electrical energy sweeps through the brain. About 70 percent of epilepsy cases have no known cause. Epilepsy can be caused by injury to the brain, tumors, brain infections such as encephalitis or meningitis, or lack of oxygen during birth. For some children, it will be a temporary, easily controlled condition that will be outgrown; for others, it will be a life-long challenge.


Some seizures are noticeable while some go completely unrecognized. With the most common types of seizures there is some loss of consciousness, but some seizures may only involve small movements of the body or strange feelings. Childhood epilepsy is usually treated with seizure-preventing drugs. If these do not work, surgery, a special "ketogenic" diet (high fat, low carbohydrate), or vagus nerve stimulation may be effective.


Longstanding seizure disorders may be associated with brain damage and memory problems. Children with epilepsy may experience learning or concentration problems because of either the neurological disorder or the medications.


For more information:


Epilepsy Foundation

800-332-1000

www.efa.org




Expressive Language Disorder

Some children understand spoken language but are unable to use it effectively. An expressive language disorder is an impairment in the ability to use words in context, both verbally and non-verbally. The child's expressive (speaking and/or writing) language ability is substantially lower than the receptive (hearing and understanding) language ability, and the child's assessed intelligence. This disorder interferes with both speaking and writing. Characteristics include:

  • Improper use of words and their meanings
  • Inability to express ideas
  • Inappropriate grammatical patterns
  • Reduced vocabulary
  • Problems with organizing language
  • Difficulty with sequencing when relating a story or information
  • Difficulty retrieving a word that is known (dysnomia)

Professionals who may be helpful are audiologists, who diagnose hearing disorders, and speech-language pathologists, who assess and treat language disorders. Because communication skills are essential for academic, social, and occupational activities, it is important to seek intervention as soon as possible. Technology and the use of electronic and computerized communication devices now allow many individuals with severe disabilities to share their thoughts.


For more information:


American Speech-Language-Hearing Association

800-638-8255

Email: actioncenter@asha.org

www.asha.org


National Information Center on Children and Youth with Disabilities

800-695-0285

Email: nichcy@aed.org

www.nichcy.org


Learning Disabilities Association of America

412-341-1515

www.ldanatl.org




Failure to Thrive

Failure to thrive in infants and children is usually noticed by failure to gain height and weight. In addition, physical skills such as rolling over, sitting, standing and walking are slow to develop, and mental and social skills are delayed. It can be caused by medical problems, or by psychosocial problems within the child's environment.


Medically, problems such as reflux, malabsorption, parasites, milk intolerance and diarrhea will cause significant FTT as will complex heart problems, kidney problems or failure, steroid use, damage to the brain, liver disease, lung problems such as Cystic Fibrosis, and thyroid hormone deficiency. Factors during pregnancy, such as smoking, drugs, alcohol, malnutrition and illness can also contribute.


Psychological and social causes can include emotional deprivation, malnutrition, extreme neglect, institutionalization, living conditions and parental attitudes. Environmental factors include exposure to infections, parasites or toxins.


If a child has FTT, a physician must assess and determine which of the causes exist. Medications, a well-balanced diet, parental education and improvement of living conditions may all be necessary. If the period of FTT is short and the cause is treated, normal growth and development will resume. If prolonged, the effects may be long-lasting, and normal growth and development may not be achieved.


For more information:


American Academy of Family Physicians

800-274-2237

www.aafp.org


The MAGIC Foundation for Children

708-383-0808

www.magicfoundation.org




Fetal Alcohol Spectrum Disorder

Fetal Alcohol Spectrum Disorders (FASD) is an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects may include physical, mental, behavioral, and/or learning disabilities with possible lifelong implications. The term FASD is not intended for use as a clinical diagnosis. An individual would not receive a diagnosis of FASD. Diagnoses like Fetal Alcohol Syndrome (FAS), partial FAS and Alcohol Related Neurodevelopmental Disorder fall under the umbrella of FASD. Each year, as many as 40,000 babies are born with FASD.


Fetal Alcohol Syndrome (FAS) is a birth defect syndrome caused by maternal alcohol consumption during pregnancy. FAS is characterized by:

  • Growth deficiency (height or weight < 10th percentile)
  • A unique cluster of minor facial anomalies (small eyes, smooth philtrum, thin upper lip)
  • Central nervous system damage (structural, neurological, and/or functional impairment)
  • Prenatal alcohol exposure

The prevalence of FAS is estimated to be 1 to 3 per 1,000 live births. This is roughly equivalent to the prevalence of down syndrome. FAS is the leading known cause of mental retardation and developmental disabilities and is entirely preventable.


Partial FAS is a diagnostic classification for patients who present with:

  • Most, but not all, of the growth deficiency and/or facial features of FAS
  • Central nervous system damage (structural, neurological, and/or functional impairment)
  • Prenatal alcohol exposure

Alcohol Related Neurodevelopmental Disorders (ARND) is a diagnostic classification, coined by the Institute of Medicine in 1996, for patients who present with:

  • Central nervous system damage (structural, neurological, and/or functional impairment)
  • Prenatal alcohol exposure

Fetal Alcohol Effects (FAE) was a term, introduced in 1978, that was used to escribe abnormalities seen in individuals that were compatible with those caused by prenatal alcohol exposure, but the pattern was not sufficiently complete to render a diagnosis of FAS. FAE was rapidly adopted as a medical diagnostic term. In 1995, Aase et. al. published a paper expressing concern about the clinical validity of the term FAE. The term implied a causal association between prenatal alcohol exposure and abnormalities observed in an individual patient that could not be confirmed. With the likely exception of the full FAS facial phenotype, no other physical anomalies or cognitive/behavioral disabilities observed in an individual with prenatal alcohol exposure are necessarily specific to (caused only by) their prenatal alcohol exposure. Features such as microcephaly, neurological abnormalities, attention deficit, mental retardation, and growth deficiency frequently occur in individuals with prenatal alcohol exposure, and frequently occur in individuals with no prenatal alcohol exposure. (From Fetal Alcohol Syndrome Diagnostic & Prevention Network, University of Washington)


For more information:


National Organization on Fetal Alcohol Syndrome

800-66NOFAS or 202-785-4585

Email: info@nofas.org

www.nofas.org


National Clearinghouse for Alcohol and Drug Information

800-729-6686

www.health.org


Fetal Alcohol Syndrome Diagnostic & Prevention Network

www.depts.washington.edu/fasdpn/index.htm


National Center for Birth Defects & Developmental Disabilities

Email: bddi@cdc.gov

www.cdc.gov/ncbddd/fas/default.htm




Fragile X Syndrome

Fragile X Syndrome, also called Martin-Bell syndrome, is a genetic disorder that is the most common form of inherited mental retardation. Fragile X affects 1 in 2000 males and 1 in 4000 females of all races and ethnic groups. Molecular DNA tests for Fragile X syndrome were developed in the 1990s, but many people with fragile X are not properly diagnosed.


Boys are typically more severely affected than girls. Symptoms of fragile X include intellectual disability, physical features, emotional problems and behavioral characteristics, among them:

  • Mental impairment (subtle learning disabilities to severe mental retardation)
  • Attention deficit and hyperactivity
  • Anxiety and unstable mood
  • Autistic-like behaviors
  • Long face, large ears, flat feet, and hyperextensible joints
  • Speech/language delay

Special education, speech and language therapy, occupational therapy, and behavioral therapies can all be employed, while medication may help with aggression, anxiety, hyperactivity and poor attention span. Because fragile X can have such a varied impact, it is important to carefully evaluate each child's needs.


Some symptoms become less evident with age, and some adults with fragile X syndrome are able to live independently. Although there is no cure for fragile X syndrome yet, all individuals with fragile X can make progress and appropriate education and medication can help maximize each child's potential.


For more information:


Fraxa Research Foundation

978-462-1866

Email: info@fraxa.org

www.fraxa.org


The National Fragile X Foundation

800-688-8765

Email: natlfx@nfxf.org

www.nfxf.org




Gastrointestinal Motility Disorders

Gastrointestinal disorders, reflux issues and NG or G-tube feeding fall into the category of pediatric gastrointestinal (GI) motility disorders. These include a range of conditions affecting a child's ability to swallow and process food.


These disorders range from relatively common and treatable conditions such as GERD (Gastro-esophageal Reflux Disease, or "reflux") to extremely rare and sometimes life-threatening disorders such as Chronic Intestinal Pseudo-obstruction. Depending on the nature and severity of a child's condition, treatments can include relatively simple lifestyle changes, treatment with drugs, surgery, or in very rare cases, dependence on intravenous nutrition.


For more information:


National Institute of Diabetes & Digestive & Kidney Diseases

www.niddk.nih.gov


International Foundation for Functional Gastrointestinal Disorders

888-964-2001

www.iffgd.org




Generalized Anxiety Disorder

Generalized anxiety disorder (GAD), sometimes called overanxious disorder of childhood, is much more than the normal anxiety people experience from day to day. It is chronic and exaggerated worry and tension, even though nothing seems to provoke it, lasting 6 months or more. Children with generalized anxiety disorder may worry excessively about upcoming events and occurrences, their academic performance, sports activities, punctuality, and disasters. Sometimes simply the thought of getting through the day provokes anxiety.


About 4 million Americans have generalized anxiety disorder, which most often begins in childhood or adolescence, and affects women more often than men. Research suggests that it may run in families and may grow worse during stress. A qualified child or adolescent psychiatrist, psychologist, social worker or other mental health professional should be able to recognize generalized anxiety disorder. Fortunately, anxiety disorders tend to respond well to treatment, which can include medication or cognitive behavioral therapy. With treatment, most children and adolescents can resume normal development.


For more information:


Anxiety Disorders Association of America

301-231-9350

www.adaa.org


National Mental Health Association

800-969-NMHA or 800-969-6642

www.nmha.org




Growth Disorders

Growth failure is related to a wide variety of syndromes, diseases or disorders of which many are not obvious or well-known. It is estimated that more than two million children in this country are affected by short stature. Many have a problem that may radically affect the quality of their lives. In many cases, medical care can effectively treat the underlying problem. The longer treatment is delayed, the harder it is for a child to catch up.


Some specific growth disorders are:

  • Central Precocious Puberty
  • Congenital Adrenal Hyperplasia
  • Constitutional Growth Delay
  • Failure To Thrive
  • Growth Hormone Deficiency
  • Hypophosphatasia
  • McCune-Albright Syndrome
  • Russell Silver Syndrome
  • Thyroid Disorders
  • Turners Syndrome

For more information:


Human Growth Foundation (HGF)

800-451-6434

Email: hgf1@hgfound.org

www.hgfound.org


The Magic Foundation for Children's Growth

800-3 MAGIC 3 or 800-362-4423

Email: info@magicfoundation.org

www.magicfoundation.org




Hearing Loss - Partial

About one in every ten people in the U.S. have major hearing loss. About 90-95% of the hearing impaired population have correctable hearing loss. About 5%-10% can be helped medically or surgically (including cochlear implants). The other 90%-95% can correct their hearing loss with hearing aids. Hearing aids cannot totally restore hearing, but they can make a big difference in improving the quality of life of people with hearing loss.


What are some of the signs of hearing loss specific to children?

  • Not responding to someone talking out-of-view, particularly with little distraction
  • Using “what?” or “huh?” frequently
  • Intently watching the faces of speakers
  • Sitting close to TV with volume high or turning up volume on stereo
  • Switching ears frequently on the phone
  • Not being startled by intense sounds
  • In infants, not turning head toward sound
  • Speech does not appear to be developing normally (e.g. some recognizable words by 12 months)

For more information:


League for the Hard of Hearing

917- 305-7700

TTY: 917-305-7999

www.lhh.org


American Speech-Language-Hearing Association

800-638-8255

Email: actioncenter@asha.org

www.asha.org


National Institute on Deafness and Other Communication Disorders (NIDCD)

301-496-7243

TTY: 301-402-0252

Email: nidcdinfo@nidcd.nih.gov

www.nidcd.nih.gov




Heart Defect

A congenital heart defect occurs when the heart or blood vessels near the heart don't develop normally before birth.


Congenital heart defects are the most frequent congenital malformations in newborns. In most cases scientists don't know why they occur. Sometimes a viral infection, such as German measles, causes serious problems by interfering with the development of the baby's heart. Certain conditions affecting multiple organs, such as Down syndrome, can involve the heart, too. A high number of congenital heart defects also result from mothers drinking too much alcohol or using drugs such as cocaine during pregnancy.


Certain defects prevent the heart from pumping enough blood to the lungs or other parts of the body. A child may experience rapid heartbeat and breathing difficulties. Some defects make the skin turn gray or blue (cyanosis), indicating defects that prevent the blood from getting enough oxygen.


Most heart defects can be corrected, or at least helped, by surgery, medicine, or devices such as artificial valves and pacemakers. Early corrective surgery often prevents other complications, and allows a child to live a more normal life sooner. Virtually all children with simple defects survive into adulthood and lead normal or near normal lives.


For more information:


American Heart Association

800-AHA-USA-1 or 800-242-8711

www.americanheart.org/children


March of Dimes

1-888-MODIMES or 888-663-4637

www.modimes.org




Heart Murmur

Innocent heart murmurs are sounds made by the blood circulating through the chambers and valves of the heart or through blood vessels near the heart. They are sometimes referred to by other names such as "functional" or "physiologic" murmurs. Innocent murmurs are common in children and are quite harmless. Most innocent murmurs disappear when a child reaches adulthood, though some adults still have them.


Heart murmurs can also be caused by defective heart valves or holes in the heart walls. A stenotic heart valve cannot open completely, so blood is ejected through a smaller than normal opening. A valve may also be unable to close completely, leading to regurgitation of blood back through the valve when it should be closed -- such as aortic or mitral regurgitation. Murmurs can also be caused by conditions such as pregnancy, fever, thyrotoxicosis or anemia. A diastolic murmur occurs during heart muscle relaxation between beats. A systolic murmur occurs during heart muscle contraction. In some cases surgery may be necessary to correct a condition.


For more information:


American Heart Association

800-AHA-USA-1 or 800-242-8721

www.americanheart.org/children


March of Dimes

888-MODIMES or 888-663-4637

www.modimes.org




HIV

HIV, or human immunodeficiency virus, is the virus that causes AIDS (acquired immunodeficiency syndrome). A member of a group of viruses called retroviruses, HIV infects human cells and uses the energy and nutrients provided by those cells to grow and reproduce. HIV infection is often difficult to diagnose in very young children.


Infected babies, especially in the first few months of life, often appear normal and may show no telltale signs allowing for a definitive diagnosis of HIV infection. Moreover, all children born to infected mothers have antibodies to HIV, made by the mother's immune system, that cross the placenta to the baby's bloodstream before birth and persist for up to 18 months. Because these maternal antibodies reflect the mother's but not the infant's infection status, the test for HIV infection is not useful in newborns or young infants. In recent years, investigators have demonstrated the utility of highly accurate blood tests in diagnosing HIV infection in children 6 months of age and younger. One laboratory technique, called polymerase chain reaction (PCR), can detect minute quantities of the virus in an infant's blood.


Another procedure allows physicians to culture a sample of an infant's blood and test it for the presence of HIV. Currently, PCR assays or HIV culture techniques can identify at birth about one-third of infants who finally and ultimately prove to be HIV infected. With these techniques, approximately 90 percent of HIV-infected infants are identifiable by 2 months of age, and 95 percent by 3 months of age. It is also important to note that the relative risk of disease transmission to caregivers from infected children is low given preventative education and procedures.


For more information:


AIDS Info

800-HIV-0440 or 800-448-0440

Email: contactus@aidsinfo.nih.gov

www.aidsinfo.nih.gov


Women, Children & HIV

www.womenchildrenhiv.org


Elizabeth Glaser Pediatric AIDS Foundation

888-499-4673

Email: info@pedaids.org

www.pedaids.org




HIV exposed

All babies born to women with HIV infection will have HIV antibodies, transmitted from mother to baby in utero. However, only 14-33% of these babies will actually get the virus and later develop AIDS. If mother and baby are given certain anti-viral medications before and after birth, the chance of getting HIV is reduced to 3-10% (source: National Pediatric & Family HIV Resource Center).


A prompt diagnosis of HIV can be ruled in or out in a newborn within a few weeks of age by using virus culture and/or PCR tests. An early diagnosis allows early treatment to prevent complications and improve quality of life.


HIV infection progresses at different rates in children. About 20% progress rapidly, developing serious signs and symptoms within the first two years of life. A larger group, about 60%, progress at an intermediate level, and develop evidence of severe immunosuppression by age seven or eight. A third group of children remain healthy, with minimal symptoms, through age 9. The median survival time of these children is 8 to 9 years, but HIV treatment is rapidly evolving and there are many congenitally affected children who are surviving into adulthood with chronic but controlled disease. It is also important to note that there is a relatively low risk of contraction from HIV-exposed children to caregivers given simple education and precautions.


For more information:


Elizabeth Glaser Pediatric AIDS Foundation

888-499-HOPE or 888-499-4673

Email: info@pedaids.org

www.pedaids.org


Women, Children & HIV

www.womenchildrenhiv.org


AIDS Info

800-HIV-0440 or 800-448-0440

Email: contactus@aidsinfo.nih.gov

www.aidsinfo.nih.gov




Hydrocephalus

Hydrocephalus comes from the Greek: hydro means water, cephalus head. Hydrocephalus is an abnormal accumulation of fluid - cerebrospinal fluid, or CSF - within cavities called ventricles inside the brain. It may be an isolated defect or part of a larger syndrome with multiple problems.


There is no known way to prevent or cure hydrocephalus. To date, the most effective treatment is surgical insertion of a shunt. A shunt is a flexible tube placed into the ventricular system of the brain which diverts the flow of CSF into another region of the body, most often the abdominal cavity or a chamber of the heart, where it can be absorbed. A valve within the shunt maintains the CSF at normal pressure within the ventricles. This procedure is performed by a neurosurgeon.


Since the advent of shunting over forty years ago, the outcome for most children with hydrocephalus is optimistic. Many people with hydrocephalus go on to lead active, productive lives. Some children with hydrocephalus will have less than normal intelligence, physical disabilities and a variety of other medical problems. Shunt malfunctions and infections, developmental delays, learning disabilities and visual problems are not uncommon. Families need to be aware of the life long complexities of hydrocephalus to insure their children receive comprehensive on-going care and appropriate intervention services and therapies.


For more information:


Hydrocephalus Association

888-598-3789

www.hydroassoc.org



The Hydrocephalus Center

www.patientcenters.com/hydrocephalus




Hyperactivity

A congenital heart defect occurs when the heart or blood vessels near the heart don't develop normally before birth.


The term hyperactivity commonly refers to manifestations of disturbed behavior in children or adolescents characterized by constant overactivity, distractibility, impulsiveness, inability to concentrate, and aggressiveness. Hyperactivity is often associated with attention deficit disorder (which is then referred to as attention deficit hyperactivity disorder) but can also be associated with other disorders (such fetal alcohol syndrome).


Among the treatment options are behavior therapy, social skills training, medication, parent education, and modification to the child's educational program.


For more information:


American Academy of Child and Adolescent Psychiatry

202-966-7300

www.aacap.org


Children and Adults with Attention Deficit Disorder (CHADD)

800-233-4050

www.chadd.org


Family Village

www.familyvillage.wisc.edu


Attention Deficit Disorder Association

847-432-ADDA or 847-432-2332


www.add.org

 




Ichthyosis

Ichthyosis is a condition in which the skin is dry and scaly, resembling fish skin. It refers to a group of disorders caused by a genetic defect which may have been spontaneous (due to a mutation of a gene) or passed on through family inheritance. The skin's natural shedding process is slowed or inhibited and, in some forms of ichthyosis, the production of skin cells is too rapid. In some cases the symptoms do not become apparent until sometime during the first year of a child's life; in other instances it is obvious at birth that something is wrong with the baby's skin.


A mild non-hereditary form is called xeroderma. It may be more prevalent in those who bathe frequently, causing excessive dryness of the skin. In general, the goal in taking care of ichthyosis is to hydrate (moisturize) the skin, hold in the moisture, and keep scale thickness to a minimum. Treatment includes topical emollients (to moisturize), alpha hydroxy acids, and in some severe cases, oral synthetic retinoids.


For more information:


Foundation for Ichthyosis and Related Skin Types

800-545-3286

Email: linfo@scalyskin.org

www.scalyskin.org


American Academy of Dermatologists

888-462-DERM or 888-462-3376

www.aad.org




Immune System Disorder

When a defect in the immune system is congenital it is called primary immune deficiency. Primary immune deficiency diseases are disorders in which part of the body's immune system is missing or does not function properly. There are over 70 forms of primary immune deficiency, ranging widely in severity. Primary immune deficiency often presents itself in the form of "ordinary" infections. Untreated, they may be characterized by frequent life-threatening infections and debilitating illnesses.


Because of medical advances, patients who would not have survived childhood now are able to live nearly normal lives. Many patients require life-long therapies including intravenous gammaglobulin infusion, antibiotic therapies, or bone marrow transplantation.


For more information:


Immune Deficiency Foundation (IDF)

800-296-4433

Email: idf@primaryimmune.org

www.primaryimmune.org


Jeffrey Modell Foundation

212-819-0200

Email: info@jmworld.com

www.jmfworld.com


Severe Combined Immunodeficiency

Email: scidemail@scid.net

www.scid.net


ImmuneDisease.com

800-423-2090

Email: immunedisease@baxter.com

www.immunedisease.com




Irritable Bowel Syndrome

Irritable Bowel Syndrome (IBS) is a common disorder of the intestines that causes abdominal pain, gas, bloating, diarrhea, constipation, or some combination of these problems. IBS is a functional disorder, caused by a problem in how the intestines work, rather than a disease. People with IBS tend to have overly sensitive intestines that have muscle spasms in response to food, gas, and sometimes stress. Stress does not cause IBS, but it can trigger symptoms.


In children, IBS usually causes either diarrhea or pain. They may also have headache, nausea, or mucus in the stool. They may lose weight if they try to eat less to avoid pain. IBS is treated mainly through changes in diet (eating more fiber and less fat to help prevent spasms) and through bowel training. Medications like laxatives are rarely used, as children are more susceptible to addiction than adults. Stress management techniques may help some children.


See also: Gastrointestinal Motility Disorders


For more information:


International Foundation for Functional Gastrointestinal Disorders (IFFGD)

888-964-2001

www.iffgd.org


National Institute of Diabetes & Digestive & Kidney Diseases (NIDDK)

www.niddk.nih.gov




Kidney Disease

The kidneys and urinary tract form the organ system primarily responsible for cleaning and filtering excess fluid and waste material from the blood. The kidneys also function as glands that produce hormones necessary for building red blood cells and regulating blood pressure. There are many kidney and urologic diseases affecting about 13 million people in the U.S.


Children born with malformed kidneys, those who are seriously ill as newborns and those with recurrent kidney infections are at the greatest risk of developing chronic kidney disease. Their problems may first surface as failure to thrive. One of the many complications associated with this disease in children is that growth may be stunted by many inches and probably for many reasons. Typically these children don't feel well, so they don't eat well, which contributes to slow growth. Also, acid levels can rise because their kidneys aren't efficiently eliminating all the byproducts of metabolizing what they do eat. Another factor may be the child's reduced ability to form vitamin D, which helps absorb calcium in the intestine and interacts with other chemicals and hormones to form normal bone.


Although some kidney diseases can be controlled with medication, some require dialysis or kidney transplant for survival.


For more information:


National Institute of Diabetes & Digestive & Kidney Diseases

www.niddk.nih.gov


National Kidney Foundation (NKF)

800-622-9010

Email: info@kidney.org

www.kidney.org




Lead Poisoning

Lead poisoning is one of the most common child health problems in the U.S. It is caused by too much lead in the body and is especially harmful to children younger than 6, since lead is more easily absorbed into growing bodies.


Why is lead so toxic? The body mistakes it for calcium when ingested. The lead then attaches to and disrupts enzymes essential to the functioning of the brain and other cells. The body never decomposes the lead into another, more easily tolerated substance.


Chelation can remove lead from the bloodstream, but most of the lead that is absorbed into a child's brain remains there forever. One out of 6 children under age 6 has enough lead in his blood to place him at high risk.


Symptoms of lead poisoning include:

  • Headaches
  • Irritability
  • Abdominal Pain
  • Vomiting
  • Anemia
  • Weight Loss
  • Poor Attention Span
  • Noticeable Learning Difficulty
  • Slowed Speech Development
  • Hyperactivity

Exposure to excessive levels of lead can cause brain damage, affect a child's growth, damage kidneys, impair hearing, and cause learning and behavioral problems. Pediatricians can test for lead poisoning and also offer advice to help reduce future lead exposure.


For more information:


National Lead Information Center

U.S. Environmental Protection Agency

800-424-LEAD or 800-424-5323

www.epa.gov/lead


National Safety Council's Fact Sheet Library

630-285-1121

Email: info@nsc.org

www2.nsc.org/library/facts/lead.htm




Loss Issues

Children and teenagers react to loss and grief differently from adults. Parents should be aware of normal childhood responses as well as danger signals. Some children feel immediate grief while others may deny the loss. But long-term denial or avoidance of grief is unhealthy and can result in more severe problems.


Children may display their feelings of sadness on and off over time, and at unexpected moments. Anger, a natural reaction to loss, may be revealed in rough play, nightmares, or irritability, and is often shown towards the new adoptive family. Many children regress and temporarily become more infantile. Teenagers respond to and express grief in many different ways, which may be constructive (such as talking with trusted friends, journal writing, and artwork) or destructive (such as alcohol and substance abuse, high risk behaviors, and withdrawal from social activities).


Adults can help a grieving child by listening, answering questions, and giving the child permission to show feelings openly. Adults can help teens best by being a companion on their journey, in the role of listener and learner. It can also help to tell a child his or her story, empathize, provide rituals and/or holidays to acknowledge the loss, and have pictures available. Signals that may indicate the need for professional help include extended depression, loss of interest in daily activities, changes in sleep patterns or appetite, extended regression, or drop in school performance.


For more information:


National Mental Health Association

800-969-NMHA or 800-969-6642

www.mentalhealthamerica.net


The Dougy Center for Grieving Children & Families

503-775-5683

Email: help@dougy.org

www.grievingchild.org


Fernside: A Center for Grieving Children

513-841-1012

www.fernside.org




Mental Retardation - cause not specified

Mental retardation is a condition, present from childhood, characterized by limitations is both intellectual functioning and adaptive skills. "Adaptive skills" refers to a person's adjustment to everyday life, including communication, learning, social skills, and independent living skills. Mental retardation is not a disease and should not be confused with mental illness.


Affecting 2 to 3 % of the general population, mental retardation can be caused by any condition that impairs brain development, either before birth, during birth, or in the early childhood years. This includes genetic conditions, problems during pregnancy such as substance abuse, problems at birth such as prematurity and low birth weight, some childhood diseases, and conditions caused by poverty such as malnutrition or inadequate medical care.


Intellectual functioning is typically measured by an intelligence (IQ) test. A score of 70 or below is considered lower than average. Individuals with mild retardation (IQ range 50-75) are considered educable, and as adults are often able to live independently and hold a job. An individual with moderate retardation (IQ range 25-50) is considered trainable and may be able to live semi-independently and work in a sheltered workshop.


Children with mental retardation are able to learn, develop and grow. They need appropriate educational services from infancy throughout the developmental period and beyond. The great majority of them can become productive citizens and full participants in society.


For more information:


National Information Center for Children and Youth with Disabilities (NICHCY)

800-695-0285

Email: nichcy@aed.org

www.nichcy.org


The Arc

301-565-3842

Email: info@thearc.org

www.thearc.org


American Association on Mental Retardation

800-424-3688

www.aamr.org


National Center on Birth Defects & Developmental Disabilities

Email: bddi@cdc.gov

www.cdc.gov/ncbddd/dd/ddmr.htm




Mental Retardation - genetic

Mental retardation is attributable to any condition that impairs development of the brain before birth, during birth, or in the childhood years. More than 500 genetic diseases are associated with mental retardation. Genetic disorders are not necessarily inherited. They may also be caused by errors when genes combine or when cells divide, or occurrences during pregnancy such as infections or overexposure to x-rays.


Genetic conditions include single gene disorders, chromosomal disorders, and multifactorial disorders. Single gene disorders are caused by non-working genes. Examples are phenylketonuria (PKU) and fragile X syndrome, the leading cause of all inherited mental retardation. Chromosomal disorders happen sporadically and are caused by too many or too few chromosomes, or by a change in structure of a chromosome. Down syndrome, Trisomy 13, and Trisomy 18 are examples of chromosomal disorders. Multifactorial disorders are combinations of multiple gene and environmental factors which lead to mental retardation.


Children with mild mental retardation are not as likely to have inherited the condition due to their genetic make-up as are children with severe mental retardation. Environmental factors, such as poor nutrition and lack of health care, are more likely to cause mild levels of retardation, while up to 60 % of severe mental retardation can be attributed to genetic causes. Regardless of whether their condition is caused by genetic factors or not, with early intervention, a functional education, and appropriate supports as adults, even individuals with serious limitations in functioning can lead satisfying lives in the community.


For more information:


The Arc

301-565-3842

Email: info@thearc.org

www.thearc.org


National Information Center for Children & Youth with Disabilities (NICHCY)

800-695-0285

Email: nichcy@aed.org

www.nichcy.org


American Association on Mental Retardation

800-424-3688

www.aamr.org


National Center on Birth Defects & Developmental Disabilities

Email: bddi@cdc.gov

www.cdc.gov/ncbddd/dd/ddmr.htm




Metabolic Disorder

Metabolic disorders, or inborn errors of metabolism, are genetic disorders that interfere with the synthesis of proteins, carbohydrates, fats and enzymes. Examples of such disorders include: Branched chain ketoacidemia (maple syrup urine disease or MSUD); Galactosemia; Phenylketonuria (PKU); and fructose intolerance.


Some of these diseases are progressive and terminal, while others can be managed with special diet or medication. Early diagnosis and treatment significantly improve outcomes. Many of these conditions are discovered on the “normal newborn metabolic screen” but others are found only when a child develops symptoms.


The neurological complications of these disorders range from specific abnormalities to mental retardation. The precise reason for the mental retardation is not clear. There is significant variation in the age of onset, rate of progression and organ and skeletal involvement among disorders and among variants of each disorder. A metabolic management interdisciplinary team can make recommendations for care. These recommendations should include discussion and consideration of the following:

  • How the metabolic disorder can affect the child's development
  • Health concerns related to the metabolic disorder
  • Social, education, or family concerns
  • Special diets
  • Genetic counseling and family planning

For more information:


National Organization for Rare Disorders (NORD)

800-999-6673

Email: orphan@rarediseases.org

www.rarediseases.org


Children’s PKU Network

800-377-6677

Email: pkunetwork@aol.com

www.pkunetwork.org


National Institute of Diabetes & Digestive & Kidney Diseases

Endocrine and Metabolic Diseases Information Service

www.endocrine.niddk.nih.gov




Microcephaly

Microcephaly is a term used to designate an abnormally small head circumference. In infants, this can be a "red flag" to alert a physician to consider other possibilities including brain damage or mental retardation. It is simply a sign to look further, not a diagnosis in and of itself. Children with microcephaly range in ability, from normal ranges of functioning to severe impairment. There is no treatment for most causes of microcephaly.


For more information:


The Arc

301-565-3842

Email: info@thearc.org

www.thearc.org


National Institute of Neurological Disorders and Stroke

www.ninds.nih.gov/health_and_medical/disorders/microcephaly.htm




Motor Skills Disorder / Dyspraxia

Motor skills disorder, also called dyspraxia, is a type of learning disability involving the body's system of motion. Motor skills disorder interferes with a person's ability to make a controlled or coordinated physical response in a given situation. The cause is believed to be an immaturity of development in the brain, preventing messages from being properly transmitted. It affects at 6% of school-age children, with boys affected much more often than girls. A child with motor skills disability may:

  • Perform similar tasks differently from day to day.
  • Have trouble holding a pen or pencil, printing or writing, dialing phone numbers.
  • Have poor coordination, clumsiness, poor body awareness.
  • Be unable to hop, skip or ride a bike, have difficulty throwing and catching a ball.
  • Exhibit delays in developmental motor milestones (such as tying, buttoning).
  • Have speech and language problems resulting from the disorder (apraxia).

There is no cure for dyspraxia, but the earlier a child is treated, the greater the chance of improvement. Occupational therapy, physical therapy, and extra help at school can assist a dyspraxic child in overcoming the difficulties associated with this disorder. Children also improve in some areas as they mature.


For more information:


Dyspraxia Foundation

www.dyspraxiafoundation.org.uk


National Center for Learning Disabilities

888-575-7373

www.ld.org


LD Online

Email: ldonline@weta.com

www.ldonline.org




Muscular Dystrophy

Muscular dystrophy is a group of genetic diseases marked by progressive weakness and degeneration of the skeletal, or voluntary, muscles, which control movement. The muscles of the heart and some other involuntary muscles are also affected in some forms of muscular dystrophy, and a few forms involve other organs as well.


The major forms of muscular dystrophy are myotonic, Duchenne, Becker, limb-girdle, facioscapulohumeral, congenital, oculopharyngeal, distal and Emery-Dreifuss.


There is no cure for muscular dystrophy. Care is aimed at managing the symptoms to maximize the quality of life. Moderate exercise programs and physical therapy minimize contractures and may prevent or delay scoliosis, or curvature of the spine. Rehabilitative devices, ranging from canes to powered wheelchairs, help maintain mobility and independence. Surgical procedures can sometimes be helpful in relieving muscle shortening caused by some forms of muscular dystrophy. Special kinds of respiratory care, such as deep breathing and coughing, are often recommended.


Medications known as corticosteroids have been found to slow muscle destruction in Duchenne muscular dystrophy.


For more information:


Muscular Dystrophy Association (MDA)

800-572-1717

Email: mda@mdausa.org

www.mdausa.org


The Parent Project Muscular Dystrophy

800-714-KIDS or 800-714-5437

www.parentprojectmd.org




Neurofibromatosis

Neurofibromatosis (NF) is not a rare disease; it is the most common neurological disorder caused by a single gene. This genetic disease has “variable penetrance” meaning people with the same gene can have differing levels of disease from none at all to severe impairment. Diagnosis is often made by characteristic birth marks, “café au lait spots”, which may occur years before any other problems.


The neurofibromatoses are a set of genetic disorders which cause tumors to grow along various types of nerves and, in addition, can affect the development of non-nervous tissues such as bones and skin. NF can lead to disfigurement, blindness, deafness, skeletal abnormalities, dermal, brain and spinal tumors, loss of limbs, malignancies, learning disabilities and several of the most common and serious human cancers. NF also has a connection to learning disabilities, which are five times more common in the NF population than in the general population.


There are two distinct forms of NF, NF-1 and NF-2. There is no known cure for either form, although they require different medical management. For NF-1, surgery to help some bone malformation, braces for scoliosis, and surgery and radiation for tumors are indicated. Currently, NF-2 has no treatment besides surgical removal of tumors and radiation therapy. Because of disfigurement, social isolation, loneliness and stress may occur; counseling is often helpful.


For more information:


Neurofibromatosis, Inc.

800-942-6825

www.nfinc.org


Children’s Tumor Foundation

800-323-7938

Email: info@ctf.org

www.ctf.org


National Institute of Neurological Disorders and Stroke

800-352-9424

www.ninds.nih.gov/disorders/neurofibromatosis/detail_neurofibromatosis.htm




Neurological Impairment

A neurological condition involves the nervous system. According to the American Academy of Neurology there are literally thousands of neurological conditions, affecting every sector of our society and every age group. The Academy's web site, www.aan.com, includes information and fact sheets on a variety of these conditions.


For more information:


Neurology

www.neurology.org


National Institute of Neurological Disorders and Stroke

800-352-9424

www.ninds.nih.gov


Family Village Library

Email: familyvillage@waisman.wisc.edu

www.familyvillage.wisc.edu/library.htm




Non-Specific Learning Disorder

A learning disability is a neurological disorder that affects a child's ability to interpret what is seen and heard. Learning disabilities interfere with a child's ability to store, process, or produce information, creating a gap between the child's ability and performance. 5% of all school age children in the U.S. are diagnosed with learning disabilities. Most of these children are of average intelligence or above.


Problems can show up with spoken and written language, motor skills, coordination, self control, or attention. They can impede learning to read, write, or do math, spelling and memory. Non-specific learning disabilities include delays that do not meet the criteria for a specific learning disability. Experts do not know precisely what causes learning disabilities, but contributing factors may be heredity, problems during pregnancy and childbirth, such as substance abuse, and injuries after birth, such as child abuse or lack of nutrition.


In pre-school children, failure to use language and inadequate motor skills may be early warning signs of learning disability. For school age children the primary indicator is difficulty learning grade-appropriate skills. Public schools are required to provide testing for children who may be at risk. Special education is the treatment of choice for learning disabilities in school. Learning disabilities are not cured, and do not go away, but individuals can learn to compensate for them and be academically and vocationally successful.


For more information:


Learning Disabilities Association

412-341-1515

www.ldanatl.org


National Center for Learning Disabilities

888-575-7373

www.ld.org


LD Online

Email: ldonline@weta.com

www.ldonline.org




Obsessive Compulsive Disorder

Obsessive compulsive disorder (OCD) is an anxiety disorder which can begin as young as early as the preschool years. It is characterized by obsessions (involuntary thoughts, images or impulses that run through the child's mind over and over) and compulsions (repetitive acts the child performs over and over, trying to make the obsessions go away.


There is no single, proven cause for obsessive-compulsive disorder, which affects approximately 1 million children in the United States. However, research shows that it is a brain disorder, tends to run in families, and may develop or worsen after a strep infection.


Common obsessions in children and adolescents are:

  • Fears of contamination, intruders, or serious illness
  • The need for exactness
  • Excessive doubt

Common compulsions include:

  • Repetitive rituals such as cleaning or washing
  • Counting, arranging and organizing
  • Checking, or questioning

Obsessions usually change over time. Children over age 8 may feel embarrassed or worried by their obsessions and try to hide or deny them. Others find their rituals so time consuming they have little time for schoolwork, friendships, or other activities. Standard treatment includes medication therapy, cognitive and behavioral therapy, or some combination of these. Because Obsessive compulsive disorder is a chronic condition, a child may need to take medication indefinitely. Many symptoms can be reduced to a manageable level with medication and others can be effectively controlled with cognitive behavioral therapy.


For more information:


Obsessive-Compulsive Foundation

203-315-2190

Email: info@ocfoundation.org

www.ocfoundation.org


National Alliance on Mental Illness (NAMI)

800-950-NAMI or 800-950-6264

TDD: 703-516-7227

www.nami.org


Anxiety Disorders Association of America

240-485-1001

www.adaa.org




Oppositional Defiant Disorder

In children with oppositional defiant disorder (ODD) an on-going pattern of uncooperative, defiant, hostile behavior toward authority figures seriously interferes with the youngster's daily functioning. Symptoms, usually seen in multiple settings (both home and school), last for 6 months or more, and may include:

  • Often loses temper or argues with adults
  • Often actively defies or refuses to comply with adults' requests or rules
  • Often deliberately annoys others or blames them for own mistakes or misbehavior
  • Is often touchy or easily annoyed by others
  • Is often angry, resentful, spiteful, or vindictive

5 to 15% of all school age children have oppositional defiant disorder. Its causes are unknown. Some children with oppositional defiant disorder may go on to develop a conduct disorder, but many will respond to positive parenting techniques. In addition to training for parents, treatment also may include individual or family psychotherapy, cognitive-behavioral therapy, and social skills training. For managing the challenging behavior, experienced parents suggest:

  • Give praise and positive reinforcement whenever possible
  • Take time out to help de-escalate conflicts
  • Pick your battles
  • Set reasonable limits with enforceable consequences
  • Maintain interests other than your child

For more information:


American Academy of Child & Adolescent Psychiatry

202-966-7300

www.aacap.org


National Mental Health Information Center

800-789-2647

www.mentalhealth.samhsa.gov


Family Village

www.familyvillage.wisc.edu/library.htm




Osteogenesis Imperfecta

Osteogenesis Imperfecta (OI), also known as brittle bone disease, is a genetic disorder characterized by bones that break easily, often from little or no apparent cause. It is caused by a defect that affects the body's production of collagen, a major protein of the body's connective tissue. OI can be associated with other progressive medical conditions such as hearing loss and chronic lung disease. There are at least four distinct forms of the disorder, representing extreme variation in severity from as few as ten or as many as several hundred fractures in a lifetime.


At present there is no cure for OI. Treatment is directed toward preventing or correcting the symptoms. Care of fractures, extensive surgical and dental procedures, and physical therapy are often recommended for persons with OI. Wheelchairs, braces, and other custom-made equipment are often necessary.


The prognosis for an individual with OI varies greatly depending on the number of symptoms as well as the severity of the symptoms. Despite numerous fractures, restricted activity, and short stature, many adults and children with OI lead productive and happy lives.


Parents of children with OI face many challenges. In addition to managing the medical issues, the child's pain and mobility, they must also be concerned about providing opportunities for socialization and psychological development. In addition, many parents of OI children have been mistakenly accused of child abuse. The OI Foundation has information that parents can use to help teachers and social service agencies understand the differences between child abuse and OI.


For more information:


Osteogenesis Imperfecta Foundation (OIF)

800-981-2663

Email: bonelink@oif.org

www.oif.org


Children's Brittle Bone Foundation

847-433-4981

Email: info@cbbf.org

www.cbbf.org




Paralysis - Partial Paraplegic

The term paralysis refers to temporary or permanent loss of muscular power or sensation. Partial paraplegia refers to only the lower half of the body. Paralysis can be the result of spinal cord injuries or shaken baby syndrome.


The amount of functioning depends on where the spinal cord injury is located and whether it is "complete" or "incomplete". People with spinal cord injuries experience a loss of feeling and function below the injury, may have dysfunction of the bowel and bladder, inability to regulate blood pressure, reduced control of body temperature, and chronic pain. Many people with spinal injuries use wheelchairs, although some are able to walk with the aid of braces and crutches.


For more information:


National Spinal Cord Injury Association (NSCIA)

800-962-9629

Email: info@spinalcord.org

www.spinalcord.org


Spinal Cord Injury Information Network

www.spinalcord.uab.edu


Spinal Cord Injury Network International

800-548-2673

Email: spinal1@pacbell.net

www.spinalcordinjury.org




Paralysis - Quadriplegic

The term paralysis refers to the temporary or permanent loss of muscular power or sensation. Quadriplegia is the partial or full paralysis of all four limbs and usually the trunk. There can be many causes of paralysis, including spinal cord injuries, shaken baby syndrome and cerebral palsy.


Paralysis and spinal cord injuries create other challenges for children including problems with respiration, nutrition and digestion, bladder and bowel control, skin care, blood clotting, range of motion concerns, and problems controlling blood pressure and body temperature.


For more information:


National Spinal Cord Injury Association (NSCIA)

800-962-9629

Email: info@spinalcord.org

www.spinalcord.org


Spinal Cord Injury Information Network

www.spinalcord.uab.edu


Spinal Cord Injury Network International

800-548-2673

Email: spinal1@pacbell.net

www.spinalcordinjury.org




Perceptual Impairment

Perceptual impairment can involve the usage and understanding of language, memory, object, shape and depth perception, learning, and decision making. A perceptual impairment can be result of many disabilities, including:

  • Learning disabilities
  • Speech and language disorders
  • Attention deficit disorder
  • Visual impairment
  • Hearing impairment

For more information:


National Center for Learning Disabilities

888-575-7373

www.ld.org


LD Online

www.ldonline.org


Children & Adults with Attention Deficit/Hyperactivity Disorder (CHADD)

800-233-5040

www.chadd.org


National Association for the Visually Handicapped

Email: staff@navh.org

www.navh.org


American Speech-Language-Hearing Association

800-638-8255

Email: actioncenter@asha.org

www.asha.org




Pervasive Developmental Disorder

Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS) is a 'sub-threshold' condition in which some - but not all - features of autism or another explicitly identified Pervasive Developmental Disorder are identified. PDD-NOS is often incorrectly referred to as simply "PDD." The term PDD refers to the class of conditions to which autism belongs. PDD is NOT itself a diagnosis, while PDD-NOS IS a diagnosis.


The definition of PDD-NOS is essentially a negative one; it is used for individuals with a disorder with some features suggesting autism, but who do not meet full criteria. Although probably relatively common, research on this condition is very limited. The term PDD-NOS (also referred to as "atypical personality development," "atypical PDD," or "atypical autism") encompasses cases where there is marked impairment of social interaction, communication, and/or stereotyped behavior patterns or interest, but when full features for autism or another explicitly defined PDD are not met. While deficits in peer relations and unusual sensitivities are typically noted, social skills are less impaired than in classical autism.


See also: Autism Spectrum Disorder


For more information:


Autism Society of America

800-3AUTISM or 800-328-

www.autism-society.org


National Institute of Mental Health

www.nimh.nih.gov/publicat/autism.cfm


National Center on Birth Defects and Developmental Disabilities

Email: bddi@cdc.gov

www.cdc.gov/ncbddd/dd




Phenylketonuria (PKU)

Phenylketonuria (PKU) is a genetic condition inherited from both parents, in which the body is unable to use one of the constituents of a normal diet, an amino acid called phenylalanine (PHE). PHE is found in all protein foods such as meat, eggs, fish, milk, and cheese, and to a lesser extent in cereals, vegetables and fruits. When a child has PKU, PHE accumulates in the blood because the body lacks the enzyme needed to process it.


When undiagnosed and untreated, PKU can cause mental retardation and other neurological problems. When PKU is diagnosed early, mental retardation can be prevented through special diet. Even though PKU affects only 1 in every 10,000 babies born in the U.S., newborn screening for PKU is done in every state (and many foreign countries), because treatment is so successful if begun in the first few weeks of life.


The diet for the most severe forms of PKU eliminates all high protein foods. A synthetic formula is used as a nutritional substitute, supplemented with low protein foods. Because this formula is expensive, many states mandate insurance coverage for the cost; others provide the formula through the state health department. Because not every child has the same degree of enzyme deficiency, the diet for a particular child may be very liberal, very strict, or somewhere in between.


Ideally, all children with PKU should be followed by a specialized PKU program, to insure that blood PHE levels stay within safe levels. Experts strongly recommend that a PHE restricted diet and monitoring by a PKU treatment program should be life-long.


See also: Metabolic Disorders


For more information:


National PKU News

206-525-8140

www.pkunews.org


Children's PKU Network

800-377-6677

Email: pkunetwork@aol.com

www.pkunetwork.org




Pica

Pica (pronounced pike-ah) is an eating disorder characterized by persistent and compulsive cravings, lasting 1 month or longer, to eat non-food items. Children with pica crave and consume items such as dirt, clay, sand, paint chips, plaster, chalk, starch, coffee grounds, cigarette ashes, glue, paper, and soap. Although eating some items may be harmless, pica can result in serious health problems such as lead poisoning or iron-deficiency anemia. If the craved substance is toxic, medical emergencies and even death can occur.


As many as 10% to 20% of children experience pica at some time. Often pica accompanies a disorder such as autism, mental retardation, mental illness, or epilepsy. The specific causes of pica are unknown, but certain conditions increase a child's risk for it, including poverty, neglect, and developmental delays.


Children with pica need to be taught about acceptable and non-acceptable food substances, prevented from obtaining non-food items, and supervised directly. Your child's doctor should be contacted for assistance with treatment. If behavior continues beyond several weeks, despite your efforts to change it, consult your pediatrician for additional treatment.


For more information:


Nemours Foundation - KidsHealth for Parents

www.kidshealth.org/parent/emotions/behavior/pica.html


National Eating Disorders Association

206-382-3587

Email: info@nationaleatingdisorders.org

www.nationaleatingdisorders.org




Post Traumatic Stress Disorder

Post Traumatic Stress Disorder (PTSD) is a psychiatric disorder that can occur following the experiencing or witnessing of life-threatening events. First noticed in war veterans, post traumatic stress disorder can result from many traumatic incidents, including serious accidents, natural disasters, terrorist incidents, or violent personal assaults like child abuse. Symptoms may be mild or severe, but seem to be worse if the event was initiated by a person, such as a rape as opposed to a flood.


Post traumatic stress disorder rarely appears during the trauma itself and often surfaces several months or even years later. Children may re-experience the traumatic event through memories, play, nightmares, or feeling like the experience is happening again. Children who experience repeated trauma may develop an emotional numbness, called dissociating.


Parents should be alert to these changes:

  • Clinging behaviors or refusal to go to school
  • Persistent fears and sleep disturbances
  • Loss of concentration
  • Behavior problems or angry outbursts
  • Physical complaints with no physical cause
  • Withdrawal from family and friends
  • Worry about dying at an early age
  • Preoccupation with the events of the disaster

A child's risk of developing post traumatic stress disorder is related to the seriousness, proximity, and repetition of the trauma. Symptoms may last from several months to many years. Mental health professionals can be helpful in diagnosing and treating this condition. Behavior modification techniques, cognitive therapy, and medication have all proven successful.


For more information:


Gateway to Post Traumatic Stress Disorder Information

www.ptsdinfo.org


American Academy of Child and Adolescent Psychiatry

202-966-7300

www.aacap.org


National Institute of Mental Health

866-615-6464

www.nimh.nih.gov


National Center for PTSD

802-296-6300

www.ptsd.va.gov/public/index.asp




Prader-Willi Syndrome

Prader-Willi Syndrome (PWS) is a genetic disorder which occurs sporadically with no known cause. It is not inherited and occurs in people of both genders and all races. Affecting approximately 1 in 15,000 people, it is confirmed by a blood test. Prader-Willi syndrome typically causes low muscle tone (floppy, "rag-doll" quality), short stature, some degree of mental retardation or learning disability, incomplete sexual development, behavior problems, and a chronic feeling of hunger that can lead to excessive eating and life-threatening obesity.


While children with Prader-Willi syndrome may have "failure to thrive” as infants, increased and generally compulsive interest in food usually begins before school age. Children with PWS require an extremely low-calorie diet and must have very limited access to food in their home environments. Obsessive compulsive behaviors that are not related to food are often present, and frustration or changes in plans can easily set off loss of emotional control.


While there is no medical cure, early diagnosis can make a difference. Careful structuring of the child's environment and use of positive behavior management are important. Some individuals are helped by psychotropic medications. While they need lifelong support with food management and protection from food availability, many young people with PWS are able to complete school, hold a job, live away from home, and have a normal life span.


For more information:


Prader-Willi Association (USA)

800-926-4797

Email: national@pwausa.org

www.pwsausa.org


International Prader-Willi Syndrome Organization

www.ipwso.org




Progeria

Progeria is a disease that causes premature aging and senility in children. Lifespan is 7 to 27 years. Some symptoms include:

  • Children are normal at birth
  • Possibly slow increase to size of 2-or 3-year-old during first decade total height possibly never exceeding 5-year-old size
  • Relatively large head with small face, old wizened countenance, beaked nose, receding chin, prominent eyes
  • Parchment-like skin
  • Infantile sex organs

These special children have especially strong spirits, however. Organizations such as the Sunshine Foundation help grant special wishes of these children. One special event these children look forward to is the annual Progeria Reunion, where they and their families can leave behind everyday worries and spend a week having fun with other people that are like them and understand what they are going through.


For more information:


Progeria Research Foundation

978-535-2594

Email: info@proferiaresearch.org

www.progeriaresearch.org


The Sunshine Foundation

215-396-4770

Email: philly@sunshinefoundation.org

www.sunshinefoundation.org




Psychosis

Psychotic disorders include severe mental disorders which result in extreme impairment of a child's or adolescent's ability to think clearly, respond emotionally, communicate effectively, behave appropriately, and to understand reality.


Psychotic symptoms can be seen in young people with a number of serious mental illnesses, such as depression, bi-polar disorder, schizophrenia, and even with some forms of drug or alcohol abuse. These symptoms interfere with a person's daily functioning and can be quite debilitating.


Psychotic symptoms include:

  • Delusions (false, fixed, or unusual beliefs held by the individual, such as the belief that others are plotting against him or her)
  • Hallucinations (seeing, hearing, smelling, or feeling something that isn't really there
  • Disorganized or incoherent speech
  • Grossly disorganized or catatonic behavior

Comprehensive treatment for psychotic disorders will involve coordinating several of the following:

  • Psychotherapy
  • Specific learning programs
  • Specific social skill and behavior programs
  • Psychiatric medication
  • Special schools or hospitals
  • Active involvement by the family

To learn more about these disorders, their causes, frequency, and how they respond to treatment, see specific conditions, such as bi-polar disorder or schizophrenia.


For more information:


American Academy of Child and Adolescent Psychiatry

202-966-7300

www.aacap.org




Rare Disorder

A rare or "orphan" disease affects fewer than 200,000 people in the United States. There are more than 5,000 rare disorders that, taken together, affect approximately 20 million Americans. One in every 12 individuals in this country has received a diagnosis of a rare disease. Since its inception in 1983, The National Organization for Rare Disorders, NORD, has served as the primary non-governmental clearinghouse for information on over 5,000 rare disorders. NORD also provides referrals to additional sources of assistance and ongoing support.


MUMS is a parent-to-parent organization that has a database of over 7400 families from 25 countries covering over 1500 rare disorders. Families whose children have the same or similar disorder can find support and information by exchanging valuable information about their children. MUMS newsletters and service are free to families.


For more information:


National Organization for Rare Disorders, Inc. (NORD)

800-999-6673

Email: orphan@rarediseases.org

www.rarediseases.org


MUMS: National Parent-to-Parent Network

877-336-5333

Email: mums@netnet.net

www.netnet.net/mums


Genetic Alliance

202-966-5557

Email: info@geneticalliance.org

www.geneticalliance.org




Reactive Attachment Disorder

Reactive attachment disorder is the inability to form normal relationships with others. Children are not able to be genuinely affectionate with others, forming relationships solely on the basis of their own needs. They have no sense of belonging to anyone, and no sense of right and wrong, remorse, or compassion. They do not trust adults, have extreme control issues with them, and resist adults' efforts to nurture or guide them.


A child with reactive attachment disorder may be dishonest, manipulative or cruel, but may also superficially charming and engaging. They may also engage in primary process lying. Some areas of development will be delayed, including language skills, conceptual thinking, understanding of cause and effect, and control over impulses, particularly aggression.


Attachment bonds formed in infancy are the foundation of emotional health for years to come. If an infant's needs are not met consistently in a loving, nurturing way, whether this is a result of abuse, neglect, institutionalization, multiple changes in caregivers, or the caregiver's emotional unavailability, attachment will not develop normally. Children raised in institutions, or whose early history is unknown may be at risk for reactive attachment disorder. There is no country, sex, age or culture that can guarantee that an adopted child will not have an attachment disorder. This disorder often occurs early in a child’s life but may not be diagnosed until later in their life. That said, even children and adolescents with very serious attachment issues can be helped. Parents should consult a mental health professional experienced in this area. Many new therapeutic approaches have been developed. Effective treatment combines learning new parenting techniques with therapy focusing on both the child and the family. In time, children can learn to trust and care, and parents can learn to respond to them with an attitude of empathy, curiosity, acceptance, playfulness and love.


See also: Attachment Disorder


For more information:


Association for Treatment and Training in the Attachment of Children

803-251-0120

Email: info@attach.org

www.attach.org




Receptive Language Disability

A developmental receptive language disorder is characterized by marked impairment in the development of language comprehension which significantly interferes with academic achievement or daily living, and cannot be explained by any other condition the child may have. Developmental receptive language disorders affect approximately 3% to 10% of school-age children, though the symptoms typically appear before the age of 4 years old.


A child's deficit in receptive (receiving and understanding) language may be mild or severe. In mild cases, there may be difficulties only with particular types of words, such as spatial terms, or complex statements, such as "if-then" sentences. In more severe cases there may be multiple difficulties, including difficulty understand basic vocabulary or simple sentences, discriminating sounds, recalling, sequencing, and possible central auditory processing problems. Because using and understanding speech are strongly related, many children with receptive language disorders also have an expressive language disability.


Professionals who may be helpful are audiologists, who diagnose hearing disorders, and speech-language pathologists, who assess and treat language disorders. Because communication skills are essential for academic, social, and occupational activities, it is important to seek intervention as soon as possible. With treatment, many children with developmental receptive language disorder do eventually acquire normal language abilities.


For more information:


American Speech-Language-Hearing Association

800-638-8255

Email: actioncenter@asha.org

www.asha.org


National Center for Learning Disabilities

888-575-7373

www.ld.org


LD Online

Email: ldonline@weta.com

www.ldonline.org




Respiratory Problems

For thousands of Americans who suffer from breathing problems, each breath is a major accomplishment. The majority of children who are hospitalized are admitted with a respiratory tract illness. These illnesses are numerous, including colds, flu, asthma, allergies, pneumonia, bronchitis, bronchiolitis, and cystic fibrosis. In the area of childhood disease, the respiratory system is the most critical.


Some children with respiratory or lung disease are ventilator dependent. Some may also have sleep disorders. Other conditions associated with breathing difficulties include lung problems such as emphysema or lung cancer, heart attack, infant prematurity, and AIDS. Tobacco smoke from other family members can have a serious effect on the respiratory health of children. Studies show that infants and toddlers whose parents smoke suffer twice the rate of bronchitis and pneumonia as children of nonsmokers.


Drinking plenty of fluids will help reduce discomfort for a child with the flu or a cold. Flu shots may help certain children avoid problems. Treatments for allergies may involve medication or eliminating irritants from the child's home environment. But if minor illness becomes prolonged or occurs often, it is important to consult your child's doctor. A child with severe problems may need the help of a respiratory therapist. Working with a physician, a respiratory therapist can evaluate, treat, and care for patients with breathing disorders.


For more information:


American Association for Respiratory Care – National Lung Health Education Program

972-910-8555

Email: nlhep@aarc.org

www.nlhep.org


American Lung Association

800-LUNG-USA or 800-586-4872

www.lungusa.org




Rett's Disorder

Rett's Disorder or Rett Syndrome is a neurodevelopmental disorder seen almost exclusively in females and found in a variety of racial and ethnic groups worldwide. Believed to affect at least 1 in 10,000 females, it is caused by a defective gene on the X chromosome. Rett Syndrome is most often misdiagnosed as autism, cerebral palsy or non-specific developmental delay.


Girls with Rett Syndrome appear to develop normally until 6 to 18 months old, then enter a period of regression, losing speech and hand skills. Additional problems may include seizures, repetitive hand movements, irregular breathing, and curvature of the spine (scoliosis). Due to apraxia (the inability to program the body to perform motor movements) and speech limitations, intelligence is difficult to assess. The severity of Rett Syndrome varies with each individual. Some girls do not walk until late childhood or adolescence, while others lose this skill.


Despite these difficulties, girls and women with Rett Syndrome can experience a full range of emotions, take part in social, educational, and recreational activities, learn, and enjoy family and friends well into middle age and beyond.


For more information:


International Rett Syndrome Association

800-818-RETT or 800-818-7388

Email: irsa@rettsyndrome.org

www.rettsyndrome.org


Rett Syndrome Research Foundation

513-874-3020




Rheumatoid Arthritis

Arthritis refers to a group of diseases that cause pain, swelling, stiffness, inflammation and loss of motion in the joints. Juvenile rheumatoid arthritis refers to a condition lasting more than 6 weeks in a child up to 16 years old. It affects nearly 300,000 children in America. Although many of them do not complain of joint pain, inflammation may limit the mobility of affected joints, and bone development as well as the child's growth may be affected. Juvenile rheumatoid arthritis is an autoimmune disorder, in which the immune system begins to attack healthy cells and tissues. The cause is unknown.


Symptoms are typically worse in the morning or after a nap, commonly affecting the knees and joints in the hands and feet, but any joint can be affected. A high fever and a light pink rash may appear and disappear very quickly. Typically, there are periods when the symptoms are better or disappear (remissions) and worse (flares). Some children never have symptoms again, while others have symptoms that never go away.


Most children with Juvenile Rheumatoid Arthritis need medication and physical therapy. However, most can take part fully in physical activities and sports when their symptoms are under control. While adults with rheumatoid arthritis usually have lifelong symptoms, more than half of all affected children outgrow the illness.


For more information:


Arthritis Foundation

800-568-4045

www.arthritis.org


National Institute of Arthritis and Musculoskeletal and Skin Diseases

877-22NIAMS or 877-226-4267

Email: niamsinfo@mail.nih.gov

www.niams.nih.gov




Schizophrenia

Schizophrenia is a major psychiatric illness that causes unusual thinking, feelings, and behavior. Uncommon in children, it usually begins in adolescence or early adulthood, and is hard to recognize in its early phases. Studies show that about 1 in 100 people has this disorder, but only about 1 in every 100 adults with the disease developed it before age 13. In diagnosing schizophrenia, child and adolescent psychiatrists look for early warning signs, such as:

  • Seeing and hearing things which are not real (hallucinations)
  • Confusing television and dreams with reality
  • Confused thinking
  • Severe anxiety and fearfulness
  • Ideas that people are out to get them or talking about them
  • Behaving like a younger child
  • Severe problems in making and keeping friends

The cause of schizophrenia is not known, but genetic components leading to brain changes and bio-chemical and environmental factors all may play a role. Schizophrenia is a life-long disease that can be controlled but not cured. Children and adolescents diagnosed with schizophrenia usually need a comprehensive treatment plan involving medication, individual and family therapy, and specialized school and activity programs.


For more information:


National Schizophrenia Foundation

800-482-9534


National Alliance on Mental Illness

800-950-NAMI or 800-950-6264

NAMI: About Schizophrenia webpage


American Academy of Child & Adolescent Psychiatry

202-966-7300

www.aacap.org




Schizo-Affective Disorder

Schizo-affective disorder is a relatively rare disorder which is very difficult to diagnose accurately and often misdiagnosed. The diagnosis is used when an individual does not fit diagnostic standards for either schizophrenia or affective (mood) disorders such as depression or bipolar (manic-depressive) disorder and may have symptoms of both.


Symptoms may include delusions (false beliefs held by the individual) and hallucinations (seeing or hearing things that aren't really there) that persist even after the young person's mood has been stabilized, and are accompanied by catatonia, paranoia, bizarre behavior, or other thought disorders. Usually a combination of psychotic symptoms and affective symptoms are involved.


Like schizophrenia, schizoaffective disorder is caused by a chemical imbalance in the brain's neurotransmitters and usually begins in adolescence or early adulthood. The disorder has a large genetic component and women seem to suffer from the illness more than men. Psychiatrists often treat this disorder with an anti-psychotic medication or an anti-convulsant medication, and lithium. The prognosis, or outlook, is generally better than for those diagnosed with schizophrenia, but not quite as good as for those with mood disorders.


For more information:


National Alliance on Mental Illness

800-950-NAMI or 800-950-6264

www.nami.org/helpline/schizoaffective.htm


American Academy of Child & Adolescent Psychiatry

202-966-7300

www.aacap.org




Scoliosis

Scoliosis is a side-to side (lateral) curving of the spine, usually developing during childhood or adolescence. Frequent signs are a prominent shoulder blade, uneven hip and shoulder levels, unequal distance between arms and body, and clothes that do not "hang right." The spine of a person with scoliosis looks more like an "S" or a "C" than a straight line. Unlike poor posture, these curves can't be corrected simply by learning to stand up straight. Scoliosis tends to run in families and affects girls more than boys.


One in ten children will have scoliosis. 80% of Scoliosis cases have no known cause. Other children may develop scoliosis as a result of spinal injury, cerebral palsy, muscular dystrophy, or spina bifida. Mild cases may not need treatment but must be monitored. In moderate cases, the use of a body brace is the usual treatment. In one out of every 1000 cases surgery may be necessary.


Spinal curvature is best dealt with when a young person's body is still growing and can respond to treatments. An annual screening for Scoliosis and Kyphosis (round back) during the bone-growing years can make the difference between a preventable condition and disability in adult years.


Fore more information:


National Scoliosis Foundation

800-NSF-MYBACK or 800- 673-6922

Email: nsf@scoliosis.org

www.scoliosis.org


Scoliosis Research Society

414-289-9107

www.srs.org


Scoliosis Association

800-800-0669

www.scoliosis-assoc.org




Seizure Disorder

More than two million Americans have seizure disorders. A seizure is the outward sign of sudden, brief change in the electrical balance of the brain. A single seizure can have many causes, such as a high fever, lack of oxygen or poisoning. Seizures that occur more than once, without a special cause, are called a seizure disorder, also known as epilepsy.


Seizures last from a few seconds to a few minutes. Symptoms can range from mild to severe, and can include:

  • Convulsions
  • Episodes of blank staring
  • Muscle spasms
  • Loss of consciousness

A person can have a seizure at any time during his or her life. If epilepsy - that is, a continuing tendency to have seizures - is diagnosed, the usual treatment is regular medication. Other possibilities are surgery, a special diet, or vagus nerve stimulation (VNS).


Seizure Disorder or epilepsy is a chronic and/or lifelong condition. However, 85 % of people with epilepsy can achieve good control of their seizures and lead successful lives.


See also: Epilepsy


For more information:


Epilepsy Foundation

800-332-1000

www.efa.org




Separation Anxiety Disorder

Although separation anxieties are normal among infants and toddlers, they are not appropriate for older children or adolescents. Anxieties or fears that last for more than a month and affect social and/or academic functioning may represent symptoms of separation anxiety disorder.


Children with separation anxiety may cling to their parent and have difficulty falling asleep by themselves at night, attending school or camp, staying over at a friend's house, or even being in a room by themselves. When separated, they may fear for the parent's well-being. Separation anxiety is often associated with symptoms of depression.


About 4% of children and young adults suffer from separation anxiety disorder, and it is equally common among boys and girls. The cause is not known, although children affected tend to come from very close knit families. Stress and trauma can also be factors that might bring on the disorder.


It is important for a child experiencing separation anxiety to be seen by a mental health professional to avoid potential serious long term effects. Cognitive behavioral therapy is usually an important part of treatment, teaching youngsters how to cope with their symptoms by changing their behavior. Anxiety disorders also usually respond well to medication, which can be used in combination with therapy.


For more information:


Anxiety Disorders Association of America

240-485-1001

www.adaa.org




Sexually Transmitted Disease (STD)

Sexually Transmitted Disease (STD), a more inclusive term than venereal disease, refers to conditions acquired as a result of sexual intercourse with an infected individual. More than 20 STDs have been identified; including:

  • HIV and AIDS
  • Gonorrhea
  • Hepatitis
  • Herpes
  • HPV (genital warts)
  • PID (Pelvic Inflammatory Disease)
  • Syphilis

An STD can be passed from mother to newborn infant. STDs acquired by children may be a sign of sexual abuse. Rates of STDs are significantly higher among (sexually active) young people between the ages of 13 and 19 than in other age groups. Individuals of all backgrounds and economic levels are affected.


Some STDs may initially cause no symptoms, but eventual symptoms may range from painful sores to infertility and cervical or other cancers. Newborns infected by STDs may suffer prematurity, mental retardation, neurological damage or death. When diagnosed and treated early, almost all STDs can be treated effectively. The most severe STD, for which no cure now exists, is acquired immunodeficiency syndrome (AIDS).


Fore more information:


American Social Health Association

919-361-8400

www.ashastd.org


Center for Disease Control STD Hotline

800-232-4636

www.cdc.gov/std




Shaken Baby Syndrome

A syndrome seen in abused children and infants, shaken baby syndrome occurs when an infant or small child suffers injury or death from severe shaking or jerking by an adult or adult-sized person.


Because babies have heavy heads, weak necks, and a thin skull wall, even a few brief moments of vigorous shaking can cause serious and permanent damage. Although there may be no outward signs of injury, shaken baby syndrome is a serious form of child maltreatment.


Children with shaken baby syndrome suffer effects ranging from mild, such as learning disorders and behavioral changes, to moderate or severe, such as profound mental or developmental retardation, paralysis, blindness, deafness, or seizures. Approximately 20% of cases are fatal in the first few days after injury.


Occupational and/or physical therapy is often needed, and early intervention is essential, not just to regain function, but to maintain it. Additionally, speech-language therapy and cognitive rehabilitation may be necessary. (Cognitive rehabilitation is to the brain what physical therapy is to the body.) As the child reaches school age, school districts and parents must work closely to make sure that needed services are provided for the child.


For more information:


National Center on Shaken Baby Syndrome

888-273-0071

Email: mail@dontshake.com

www.dontshake.com


National Institute of Neurological Disorders & Stroke

800-352-9424

www.ninds.nih.gov/disorders/shakenbaby/shakenbaby.htm


National Foundation for Abused & Neglected Children

Email: nfanc@hotmail.com

www.gangfreekids.org/shakenSyndrome.html




Sickle Cell Anemia

Sickle cell disease is an inherited blood disorder. In the United States, it is most prevalent among African Americans, but is also found in other ethnic groups including people of Latino, Mediterranean and Middle Eastern descent. Three common types of the disorder are Sickle Cell Anemia, Sickle Hemoglobin C disease, and Sickle Beta-Thalassemia.


In all types of sickle cell disease, red blood cells contain an abnormal type of hemoglobin. These cells become hard and sickle (crescent) shaped and have difficulty passing through small blood vessels, causing pain, tissue damage, a low blood count, and anemia. Complications include episodes of pain, strokes, and damage to most organs, including the lungs, spleen, kidneys and liver.


Infants and young children with sickle cell disease are especially vulnerable to severe bacterial infections, such as those that cause meningitis and pneumonia. However, early diagnosis and treatment reduce the risk of infections and death dramatically (by about 85%). It is very important for babies and children with sickle cell disease to receive regular childhood vaccinations, including the Hib, pneumococcal and hepatitis B vaccine, as well as flu shots when they are older.


There is no universal cure for Sickle Cell Disease. A bone marrow transplant is not a realistic option for most patients. The use of hydroxyurea has shown promising results for some adult patients. Although their life span may be shorter, people with sickle cell disease can live a productive life, especially with a comprehensive multi-disciplinary program of care, a knowledgeable medical team, and a strong extended support system.


For more information:


Sickle Cell Disease Association of America

800-421-8453

Email: scdaa@sicklecelldisease.org

www.sicklecelldisease.org


Center for Sickle Cell Disease – Howard University

202-806-7930


Medline Plus – Sickle Cell Anemia

www.nlm.nih.gov/medlineplus/sicklecellanemia.html




Sickle Cell Trait

Sickle Cell Disease is an inherited disease. Sickle Cell Anemia is a common type of sickle cell disease. To inherit the disease, a child must receive two sickle cell genes-- one from each birth parent who carries a sickle cell gene. A child who inherits only a single sickle cell gene is said to have sickle cell trait, and is called a sickle cell carrier. Sickle cell carriers are as healthy as non-carriers, rarely having any health problems related to the trait. They cannot develop sickle cell disease. However, when two carriers have a child, their child has a greater chance of inheriting two sickle cell genes and having the disease.


In the United States, most cases of sickle cell trait occur among African Americans (approximately 1 in 12 have the trait) and Latinos of Caribbean ancestry (approximately 1 in 172). There are about 2.5 million people in the United States with sickle cell trait.


See also: Sickle Cell Anemia


For more information:


Sickle Cell Disease Association of America

800-421-8453

Email: scdaa@sicklecelldisease.org

www.sicklecelldisease.org




Speech Disorder

Speech and language disorders are delays and disorders in communication and related areas, ranging from simple sound substitutions to the inability to understand or use language. Causes include:

  • Hearing loss
  • Neurological disorders
  • Brain injury
  • Drug abuse
  • Physical impairments such as cleft lip or palate
  • Abuse or misuse of the voice (i.e. chronic shouting

Communication disorders may also be related to other disabilities such as mental retardation, autism, or cerebral palsy. Frequently the cause is unknown. It is estimated that they affect one of every 10 people in the United States.


A speech disorder involves expressive language-- speaking, articulation, producing sound, voice quality, or fluency (stuttering). A language disorder involves receptive language (understanding). A child's communication is considered delayed when the child is noticeably behind peers in acquiring speech or language skills.


Professionals who may be helpful are audiologists, who diagnose hearing disorders, and speech-language pathologists, (speech therapists), who assess and treat language, speech, and swallowing disorders. Because any communication disorder has the potential to isolate a child from his or her classmates, friends, and family, it is important to seek intervention as soon as possible. Technology and the use of electronic and computerized communication devices now allow many individuals with severe disabilities to share their thoughts.


For more information:


American Speech-Language-Hearing Association

800-638-8255

Email: actioncenter@asha.org

www.asha.org


National Information Center for Children and Youth with Disabilities

800-695-0285

www.kidsource.com/NICHCY/speech.html


LD Online

Email: ldonline@weta.com

www.ldonline.org




Spina Bifida

Spina Bifida is one of a group of birth defects called neural tube defects (NTDs). It results from the failure of the spine to close properly during the first month of pregnancy. Spina Bifida is one of the most common severe birth defects in the United states, affecting approximately one out of every 1000 newborns. The risk of an infant being born with spina bifida is affected by the birth mother's diet, especially the amount of the B vitamin, folic acid that she consumes.


Because of paralysis resulting from damage to the spinal cord, babies born with spina bifida may need surgeries and other extensive medical care. While the milder forms of spina bifida can be symptomless, the most severe form may necessitate a series of operations throughout childhood.


Often, children need to learn mobility skills. The use of braces, crutches or wheelchairs may help them achieve more independence. Studies show that about 70% of affected children are able to walk, with or without aids. Many children need training to learn to manage their bowel and bladder functions, and a large percentage also have hydrocephalus, an accumulation of fluid on the brain which is controlled surgically with a shunt. Other common related conditions are learning problems and an allergy to latex.


With treatment, most children with spina bifida live well into adulthood and become active individuals.


For more information:


Spina Bifida Association

800-621-3141

Email: sbaa@sbaa.org

www.sbaa.org


Family Village - Spina Bifida

Email: familyvillage@waisman.wisc.edu

www.familyvillage.wisc.edu/lib_spin.htm




Takes Psychiatric Medication

Medication may be an effective part of the treatment for several psychiatric disorders of childhood and adolescence. Psychiatric medication should not be used alone. It should be part of a comprehensive treatment plan, usually including medical psychotherapy. Psychiatric medications may be prescribed for a number of problems, including:

  • Bedwetting
  • Specific fears (phobias) or general anxiety
  • Attention deficit hyperactive disorder
  • School phobia (separation anxiety)
  • Depression
  • Eating disorder
  • Manic-depressive condition
  • Psychosis

There are major categories of psychiatric medication:

  • Stimulant medication - such as dexedrine or methylphenidate (Ritalin)
  • Anti-depressants -which include several types: tricyclic antidepressants (TCAs) such as Amitriptyline (Elavil); serotonin reuptake inhibitors (SRIs) such as Fluoxetine (Prozac); monoamine oxidase inhibitors (MAOIs) such as Phenelzine (Nardil); and atypical antidepressants, such as Bupropion (Wellbutrin)
  • Antipsychotic medications ("major tranquilizers") - such as Chlorpromazine (Thorazine), Haloperidol (Haldol), and Risperidone (Risperdal)
  • Mood stabilizers and anticonvulsant medications, such as Valproic Acid (Depakote)
  • Anti-anxiety medications, including benzodiazepines such as Alprazolam (Xanax); and atypicals such as Buspirone (BuSpar)
  • Sleep medications, such as Diphenhydramine (Benadryl)

Child and adolescent psychiatrists stress that medications which have beneficial effects also have unwanted side effects, ranging from just annoying to very serious.


For more information:


American Academy of Child and Adolescent Psychiatry

202-966-7300

www.aacap.org




Terminal Illness

A terminal illness is an illness that, because of its nature, can be expected to cause the patient's death. It is estimated that each year 53,000 children in the United States die from trauma, extreme prematurity, hereditary disorders, acquired illness, or other conditions. Often, a terminal illness is a chronic disease for which there is no known cure. Many childhood terminal illnesses are rare disorders, sometimes also known as "orphan" diseases.


An infant or child with a terminal illness and his or her family may benefit from palliative care-- care designed to relieve or minimize the symptoms of the condition, including the physical, emotional, social, and spiritual. Palliative care, also called comfort care, focuses on quality of life for the child and support for the family and includes the management of distressing symptoms, provision of respite, and care through death and bereavement.


See also: Rare Disorder


For more information:


Growth House, Inc.

415-863-3045

Email: info@growthhouse.org

www.growthhouse.org


National Organization for Rare Disorders, Inc. (NORD)

203-744-0100

Email: orphan@rarediseases.org

www.rarediseases.org


National Hospice & Palliative Care Organizations

703-837-1500

Email: nhpco_info@nhpco.org

www.nhpco.org




Tourette Syndrome

Tourette Syndrome is an inherited, neurological disorder characterized by repeated and involuntary body movements (tics) and uncontrollable vocal sounds. In a minority of cases, the vocalizations can include socially inappropriate words and phrases, called coprolalia. These outbursts are neither intentional nor purposeful. Involuntary symptoms can include eye blinking, repeated throat clearing or sniffing, arm thrusting, kicking movements, shoulder shrugging or jumping.


The cause of Tourette Syndrome has not been established. Symptoms typically appear before the age of eighteen, and the condition occurs in all ethnic groups with males affected three to four times as often as females. Approximately 100,000 Americans are affected. Although the symptoms of TS vary from person to person and range from very mild to severe, most cases are mild.


Most individuals with Tourette Syndrome are not significantly disabled by their symptoms. In severe cases, it is possible to control many of the symptoms with medication. In such cases, early diagnosis and treatment are crucial to avoid psychological harm. Children with Tourette Syndrome are also more likely to have attentional problems, obsessive or compulsive behavior, impulsivity, learning disabilities, and/or sleep disorders. Most people with TS get better as they mature, often experiencing marked improvement in their young adult years, and having a normal life span.


For more information:


Tourette Syndrome Association (TSA)

718-224-2999

Email: ts@ts-usa.org

www.tsa-usa.org




Trisomy 13

Trisomy 13 is a chromosomal, genetic disorder which begins before birth. It is sometimes called Patau's syndrome, trisomy 13-15D or simply trisomy syndrome. Under normal circumstances, chromosomes are present in pairs. If a baby is born with three chromosomes instead of a pair, the result is a trisomy. Trisomy 13 is the presence of three #13 chromosomes.


Trisomy 13 occurs in approximately 1 in 5000 live births, and presents a combination of birth defects, including severe mental retardation and nearly every organ system. Symptoms of many newborns are small size, apnea, deafness, microcephaly, brain structural defects, cleft lip and palate, and extra fingers and toes. Heart defects, location of the heart on the right side, and abnormal genitalia are common. Trisomy 13 can be confirmed by a blood sample. There is no known cause or cure. Only 5 to 10% of babies with trisomy 13 survive the first year, but life expectancy may be hard to predict. Some children survive into their teens, but this is unusual.


Parents of children with Trisomy 13 often must make many major, difficult and personal decisions early in the child's life. Parents may draw on the help of early intervention services, hospice care, social workers, and clergy, as needed. Other families who have parented a baby with trisomy 13 can be particularly supportive.


For more information:


SOFT: Support Organization for Trisomy 18, 13, and Related Disorders

800-716-SOFT or 800-716-7638

www.trisomy.org


Children's Hospital Boston

617-355-6000

TTY: 617-355-0443

Children's Hospital Boston: About Trisomy 13




Visually Impaired

Visual impairment is defined as blindness in one or both eyes, or any other trouble seeing, even when wearing glasses. It is estimated that in the United States 26 million adults are affected by some visual disorder.


The term visual impairment, also referred to as partial blindness or partial sightedness, covers many specific conditions, such as amblyopia, strabismus, congenital cataracts, cortical visual impairment, glaucoma, vision loss, and low vision. Birth defects, injury, poor health, or complications of disease may be factors.


The partially seeing have needs which vary greatly with age, the degree of motivation and the type of impairment. It is important that a child be examined by a competent ophthalmologist or optometrist. Services may not cure the cause of the vision problem, but they can utilize the remaining vision to its fullest potential.


Most people who have vision loss retain residual vision throughout their lives. People with low vision, regardless of age, can participate fully in school, employment, household tasks, and other everyday activities.


See also: Blindness - Correctable, Blindness - Permanent


For more information:


National Association for the Visually Handicapped

212-889-3141

Email: staff@navh.org

www.navh.org


National Association for Parents of Children with Visual Impairments

800-562-6265

www.spedex.com/napvi


Lighthouse International

800-829-0500

www.lighthouse.org




Wheel Chair Dependent

Wheelchair dependency, or wheelchair use, is a term used in reference to individuals with physical disabilities who are able to be mobile with the use of special transportation. Many different conditions can result in the need for a wheelchair. Various types of wheelchairs are available today, both manual and powered. They differ in frames, seating, tires, brakes, and removable hardware, and some are able to grow with the child from a very young age through the teen years.


Parents of children who use a wheel chair must consider questions such as whether the wheelchair is for indoors or outdoors, at school or at home. To transport a power chair, a ramp and a van will be needed. Other equipment may be inexpensive, such as a transfer board to help the child move into and out of the chair. Parents will need to be aware of accessibility in the child's environment-- the width of doorways or height of furniture at home, the presence of sidewalk curbs, steps, and accessible bathrooms in public.


Today, many adults who use wheelchairs work in a variety of fields and lead active, productive lives.


See also: Paralysis – Partial Paraplegic, Paralysis - Quadriplegic


For more information:


WheelchairNet - University of Pittsburgh

412-383-6586

Email: wheelchairnet@shrs.pitt.edu

www.wheelchairnet.org


Shriners Hospitals for Children

800-237-5055

www.shrinershq.org/Hospitals/Main


Exceptional Parent Magazine

877-372-7368

www.eparent.com




Williams Syndrome

Williams syndrome is a genetic disorder involving a missing elastin gene on chromosome #7. Occurring in about 1 in 20,000 births, it affects both genders equally, and all ethnic groups. The cause is unknown. Symptoms include distinctive facial features, heart or blood vessel problems, elevated blood calcium causing colic in early infancy, low birth weight, feeding problems, developmental delays, learning disabilities and attention deficit.


Cognitively there is great variety, including children with average or above average intelligence, many in the borderline or mildly retarded range, and some with moderate mental retardation. In young children developmental milestones are often delayed. Older children usually have some intellectual areas quite strong (speech, long term memory, social skills) and others significantly delayed. Children with Williams syndrome are quite social, usually with a very endearing personality.


Williams syndrome can affect many different body organs, but affects each individual differently. There is no cure for Williams syndrome, but regular monitoring for potential problems is necessary. Despite the possibility of medical or learning problems, most adults master self-help skills and complete academic or vocational school. They are employed in a variety of settings, and some live on their own. Most children and adults with Williams syndrome are healthy and lead active, full lives.


For more information:


Williams Syndrome Association

248-541-3630

Email: info@williams-syndrome.org

www.williams-syndrome.org


The Williams Syndrome Foundation

949-824-7259

Email: info@williamssyndrome.org

www.wsf.org





 

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