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What is Childhood Disintegrative Disorder?

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  • Written By: R.M. Brennan
  • Edited By: Lucy Oppenheimer
  • Last Modified Date: 12 September 2016
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Childhood disintegrative disorder, also referred to as CDD and Heller's syndrome, is a rare condition in children who develop normally, and then, at around the age of three, suffer from a dramatic loss of previously attained skills, including language, self-care, and social skills. The loss of developmental skills may occur in a short period time, such as days or weeks, or the child may lose these skills over a longer time period, such as months. Similar to autism, and actually identified many years before autism, CDD is part of the spectrum of autism disorders.

Sometimes confused with, and misdiagnosed as, autism, childhood disintegrative disorder is a much more rare disease. It is found more frequently in males than in females. The diagnosis of autism, characterized by impaired social interaction and communication, and by restricted and repetitive behavior, is usually identified earlier than CDD. Although childhood disintegrative disorder is one of several disorders on the autistic spectrum, children with this disorder typically experience a much more profound loss of skills and are at a greater risk of mental retardation.

The cause of childhood disintegrative disorder is unknown, but experts suspect there is some genetic basis for it. Current research suggests that genetic susceptibility combined with prenatal or environmental stress may be factors. Failed or flawed autoimmune responses, and neurological problems, are also suspected.

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If a child experiences any gradual or sudden loss of developmental milestones, medical attention should be sought immediately. To be diagnosed with childhood disintigrative disorder, a child usually must show loss or regression in at least two of the following areas: language understanding, spoken language, social or self-help skills, the ability to sustain a conversation, peer play, motor skills, and previously established bowel or bladder control. When presented with these symptoms, the primary physician should arrange a consultation to exclude any neurologic conditions which may be treatable.

Skills lost to childhood disintegrative disorder may be permanently lost. Some of a child's behaviors, however, can be modified with the help of therapeutic intervention in conjunction with family and caregiver support. Various classes of medication, including antipsychotics, stimulants, and selective serotonin reuptake inhibitors (SSRIs), may be used to treat some behavioral and mood problems in children with this disorder. Most importantly, treatment to halt behavioral deterioration should begin as soon as possible to help ensure the best communication, self-help, social, and general functioning skills possible.

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