Childhood disintegrative disorder
Childhood disintegrative disorder
Childhood disintegrative disorder is also known as Heller's syndrome. It's a very rare condition in which children develop normally until at least two years of age, but then demonstrate a severe loss of social, communication and other skills.
Childhood disintegrative disorder is part of a larger category called autism spectrum disorder. However, unlike autism, someone with childhood disintegrative disorder shows severe regression after several years of normal development and a more dramatic loss of skills than a child with autism does. In addition, childhood disintegrative disorder can develop later than autism does.
Treatment for childhood disintegrative disorder involves a combination of medications, behavior therapy and other approaches.
Children with childhood disintegrative disorder typically show a dramatic loss of previously acquired skills in two or more of the following areas:
Loss of developmental milestones may occur abruptly over the course of days to weeks or gradually over an extended period of time.
When to see a doctor
The cause of childhood disintegrative disorder is not known. There is not enough research on this rare disorder to determine a cause.
Preparing for your appointment
A pediatrician usually performs developmental screenings at regular well-child visits. If you think your child may have a developmental disorder, talk with the pediatrician. If your child's doctor suspects a developmental disorder, you'll probably be referred to a team of childhood development specialists for more detailed testing.
What you can do
For childhood disintegrative disorder, some basic questions to ask your doctor include:
Don't hesitate to ask questions anytime during your appointment.
What to expect from your doctor
Tests and diagnosis
Normal development for at least the first 2 years of life
Significant loss of previous skills
Lack or loss of normal function
If your doctor sees signs or symptoms of a developmental disorder or delay, your child may be referred to one or more specialists for evaluation and diagnosis. These may include a child psychologist, a child psychiatrist, a doctor who specializes in conditions of the brain and nervous system (neurologist), a pediatrician specializing in behavioral and developmental problems, a hearing specialist (audiologist), a speech therapist, a physical therapist, and an occupational therapist.
These professionals may perform some or all of the following tests:
Test results allow your health care team to look for underlying medical or neurological conditions that may be causing your child's signs and symptoms, rule out other conditions or diseases, and make an accurate diagnosis. Then the team can develop the best treatment plan for your child.
Treatments and drugs
There's no cure for childhood disintegrative disorder. Treatment for the disorder is basically the same as for autism. Treatments to relieve or lessen symptoms may include:
Although abilities and behaviors vary greatly for children with childhood disintegrative disorder, the outcome is worse than for children with autism. The loss of language, cognitive, social and self-care skills tends to be severe and unlikely to improve. Children with the disorder generally need lifelong support with the activities of daily living, and may eventually need residential care in a group home or long-term care facility.
Some parents choose to supplement traditional medical treatments and behavior therapy with alternative therapies. The safety and effectiveness of alternative therapies for autism spectrum disorders have not been proved.
Always talk with your doctor before trying a new therapy. Your doctor can help you understand the risks and benefits, and alert you to any possible side effects or interactions with existing medications.
Coping and support
Child disintegrative disorder is a rare, serious condition. As a parent or family member affected by this disorder, you'll need support to cope with the condition. Here are some suggestions:
Last Updated: 2013-03-06
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