Childhood Disintegrative Disorder

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Childhood Disintegrative Disorder, also known as Heller's syndrome, is a rare condition, usually striking in later childhood, causing developmental delays in language, social function, and motor skills. Although it is one of the Pervasive Development Disorders, it differs from autism due to the age of onset, the course it follows, and the outcome.

This complex disorder was first described in 1908 by Austrian educator, Thomas Heller. Originally CDD was considered as a medical disorder. It was thought to have identifiable medical causes. However, after researchers studied various cases they did not determine a specific medical or neurological cause. This is the reason it was categorized as a PDD.

A child develops normally then CDD strikes anywhere from the age of 2 to 10 years. The child goes into a stage of regression. The regression can be sudden or come on gradually. There are a number of signs and symptoms and generally the child loses at least two of these skills: language, receptive language, social and self-care, play and motor skills. The child shows impairment in two or all three of social interaction skills, communication, and repetitive and stereotyped patterns of behavior, interests, and activities.

Although the causes of CDD are unknown recent research findings suggest that it may have something to do with the neurobiology of the brain. It has been determined that approximately 50% of those children with CDD have an abnormal electroencephalogram (EEG). CDD is also associated with seizures. Researchers have not determined if CDD plays any role in epilepsy although the occurrence of epilepsy is higher in these children. Since CDD is such a rare disorder this has resulted in making it difficult for researchers to complete further studies.

CDD is often associated with other conditions such as Lipid storage diseases (a toxic build up of excess fats takes place in the brain and nervous system; Subacute sclerosing panencephalitis (a chronic infection of the brain); and Tuberous sclerosis (a genetic disorder).

CDD generally affects about 1 in 100,000 children. Recent studies indicate that this disorder is under-diagnosed. It was originally thought that the disability struck evenly between boys and girls. The latest research indicates that this is not correct; it is now thought to strike four boys to one girl.

Children generally are diagnosed with CDD after their parent becomes concerned about the child's loss of previously acquired skills. The doctor may find it necessary to first eliminate a number of possible causes by first giving a medical examination to rule out epilepsy or other medical conditions. A youngster may have a head x-ray to rule out trauma or a brain tumor. Testing may be a long an arduous procedure involving a neurological examination, genetic tests, communication and language tests, lead screening, hearing and vision tests, as well as a behavior inventory. One of the most important tests may be the battery of developmental tests.  The following skills can be measured by using this test: large-motor, fine-motor, sensory, play, self-care, and cognitive skills. Your team of professionals will rule out all possibilities until they come to agreement that the child has CDD.

There is no cure for Childhood Disintegrative Disorder. There are no specific medications to treat the disorder. It is important, however, that a child diagnosed with CDD be given any and all possible educational opportunities available. These are not limited simply to classroom instruction.  The parent needs to push in order to have their child receive behavior therapy, the help of a psychologist, a speech therapist, a physical therapist as well as an occupational therapist if and when appropriate. It is important for everyone, from the parent or care-provider, to the teacher, and to the therapist, to remember that each person is a member of a team whereby each person needs to keep the team informed of any changes in the child.

Unfortunately, CDD has a poor outcome - worse, even, than for those children disabled by autism. Since the child loses language, cognitive, social and self-care skills it is severe and permanently disabling. The person with CDD is often placed in a group home, or a long term care facility.

Some families turn to alternative medicine to supplement their child's traditional medical treatments. This includes special diets, vitamin and mineral supplements. Other therapies such as art, music, and sessions provided by an occupational therapist are also used. Some parents turn to alternative medicine seeking a "cure." It must be emphasized, however, that, unfortunately, there is no cure for CDD.

Jack E. George is the author of two books (The Rise and Fall of the Jewish Educational Center and Call Me Pete). He has taught regular education and most recently, special education classes, specializing in autism, in California. Jack has a Master's Degree in Special Education. His third book: The Autism Hand Book scheduled for release in 2009. www.jackegeorge.com

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