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Childhood disintegrative disorder: what is it?

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Childhood disintegrative disorder is a rare condition where children lose previously acquired skills, including language, speech, self-care, and social skills around the age of three. It is part of the spectrum of autistic disorders, but children with this disorder typically experience a much more profound loss of ability and are at greater risk for mental retardation. The cause is unknown, but genetic susceptibility combined with prenatal or environmental stress may be factors. Immediate medical attention should be sought if a child experiences a gradual or sudden loss of developmental milestones. Skills lost due to childhood disintegrative disorder may be lost permanently, but some behaviors in a child can be changed with therapeutic intervention in combination with family and caregiver support.

Childhood disintegrative disorder, also known as CDD and Heller syndrome, is a rare condition in children who develop normally and then, around the age of three, suffer a dramatic loss of previously acquired skills, including language, speech, self-care, and social skills. The loss of developmental skills can occur over a short period of time, such as days or weeks, or the child may lose these skills over a longer period of time, such as months. Similar to autism, and actually identified many years before autism, CDD is part of the spectrum of autistic disorders.

Sometimes confused and misdiagnosed like autism, childhood disintegrative disorder is a much rarer disease. It is found more frequently in males than in females. The diagnosis of autism, characterized by impaired social interaction and communication and restricted, repetitive behaviors, is usually identified before CDD. Although childhood disintegrative disorder is one of several autism spectrum disorders, children with this disorder typically experience a much more profound loss of ability and are at greater risk for mental retardation.

The cause of childhood disintegrative disorder is unknown, but experts suspect there is a genetic basis. 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.

If a child experiences a gradual or sudden loss of developmental milestones, immediate medical attention should be sought. To be diagnosed with childhood disintegrative disorder, a child usually must show loss or regression in at least two of the following areas: language comprehension, spoken language, self-help or social skills, ability to hold a conversation, peer play, motor skills and previously established bowel or bladder control. When these symptoms occur, your primary care physician should arrange for a consultation to rule out any neurological conditions that may be treatable.

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

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