On Childhood Disintegrative Disorder


We conclude our discussion on the Pervasive Developmental Disorders with a brief overview of Childhood Disintegrative Disorder.

Introduction

Childhood Disintegrative Disorder (CDD), is also known as Heller’s Syndrome and Disintegrative Pschosis.  It is a rare Pervasive Developmental Disorder that affects about 1 in 100,000 children. CDD resembles many of the other disorders on the Autism spectrum in the fact that it involves developmental delays, impairment in communication and social functioning, but most closely resembles Rett syndrome in that it almost exclusively affects boys whereas Rett syndrome almost exclusively affects girls. New research suggest that while CDD affects boys more than girls at a rate of 4 to 1, it is thought that girls diagnosed with CDD most likely should have been diagnosed with Rett. There is also further talk that in the future Rett and possibly even CDD won’t be separate diagnosis, but that they will both be collapsed into the Autistic category as low functioning forms of Autism.

Symptoms

Children with CDD develop normally up until about ages 2 to 4 years of age (rarely there are cases of delayed onset up to 10 years of age), and then start regressing, losing previously acquired developmental skills with in a few months to years, including language, non-verbal communication skills, motor skills and social skills.

Symptoms include:

    • Delay or lack of spoken language
    • Impairment in nonverbal behaviors
    • Inability to start or maintain a conversation
    • Lack of play
    • Loss of bowel and bladder control
    • Loss of language or communication skills
    • Loss of motor skills
    • Loss of social skills
    • Problems forming relationships with other children and family members

Causes

There are no known causes of CDD although abnormal electroencephalograms (EEG), epilepsy, Lipid storage diseases (excess build up of toxic fats in the brain and nervous system), Tuberous sclerosis (benign tumors that may grow in the brain and other vital organs) and Subacute sclerosing panencephalitis (chronic infection of the brain due to a form of the measles that damage the brain) all appear to be associated with CDD.

Treatment

There is no cure for Childhood Disintegrative Disorder and the treatment for it is similar to the treatment for all of the Pervasive Developmental Disorders with the addition of trials with steroid medications to try to slow down the progress of the disorder.

Diagnosis

Physicians will use some of the same assessment tools used to diagnose the other Pervasive Developmental disorders with the inclusion of all the symptoms listed above and impairment in normal function or impairment in at least two of the following three areas:

  • Social interaction
  • Communication
  • Repetitive behavior & interest patterns

The main symptoms to look for in diagnosing CDD is the loss of previous learned skills in at least two of these areas:

  • Expressive language skills (being able to produce speech and communicate a message)
  • Receptive language skills (comprehension of language – listening and understanding what is communicated)
  • Social skills & self-care skills
  • Control over bowel and bladder
  • Play skills
  • Motor skills

If your child has any developmental delays or starts to lose developmental functions previously learned, it is vital to talk with your physician in order to rule out  CDD or any of the Pervasive Developmental Disorders or mental retardation. The faster any illness is discovered and treatment begins, even if there is no cure, the better the prognosis or at least the slowing of the progress of the disorder. Some children with similar, yet less severe symptoms may have a learning disability or something much less serious than a Pervasive Developmental Disorder, but it is important to have everything ruled out for the best care of your child.

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