Page header image

Childhood Disintegrative Disorder

What is childhood disintegrative disorder?

Childhood disintegrative disorder (CDD) is a rare disorder in which a child develops normally until about age 3 or 4 and then suddenly starts to show symptoms of autism. The child starts to lose the ability to move, talk, and understand.

CDD is also known as Heller's syndrome. It may also be called a pervasive developmental disorder, because a child who has it does not develop normally in several ways.

Boys are more likely than girls to have CDD.

What is the cause?

The exact cause of this disorder is not known. Many things may play a role, such as:

  • A buildup of fat in the brain and nervous system
  • Infections or tumors in the brain
  • Abnormal activity in the brain
  • Certain genes or chemical imbalances in the body

A child with CDD is also more likely to have food allergies, attention deficit hyperactivity disorder, or epilepsy. How these are related is not yet known.

What are the symptoms?

At about age 3 or 4, you may notice that something is different about your child, such as:

  • Loss of social skills, for example, avoiding eye contact and withdrawing
  • Loss of bowel and bladder control
  • Loss of the ability to understand what others are saying
  • Loss of motor skills
  • Not playing alone or with others
  • Not being able to relate to other children
  • Odd body movements, such as walking on tiptoe, flicking his fingers for long periods, or banging his head
  • Delay or loss of ability to speak
  • Not being able to start a conversation or keep one going

Once skills are lost, they are not usually regained.

How is it diagnosed?

Your healthcare provider will ask about your child's development at each well child visit. Tell your provider about any concerns you have and any behavior that seems unusual, such as losing skills that your child used to be able to do. As a parent or caregiver, you are usually the first to notice unusual behaviors in your child. Do not ignore problems, thinking that your child is just a little slow and will "catch up." Early treatment helps reduce symptoms. It increases your child's ability to grow and learn new skills.

Your child's healthcare provider will examine your child and ask about your child's symptoms and your family history of any medical and mental problems. Your child may have tests such as:

  • Blood tests
  • Hearing tests
  • CT, which uses X-rays and a computer to show detailed pictures of the brain
  • MRI, which uses a strong magnetic field and radio waves to show detailed pictures of the brain
  • EEG, which measures and records the electrical activity in the brain

Because it can be inherited, your healthcare provider may want to screen your other children for symptoms.

If your healthcare provider thinks your child may have CCD, he or she will refer you to specialists such as a psychologist, psychiatrist, speech therapist, or neurologist. They can do more testing and advise you about treatment. Your school district may also provide testing services for your child.

How is it treated?

There is no one best treatment for all children with CDD. Treatment focuses on educational and behavioral therapy.

Usually children are placed in public schools and the school district provides all needed services. These will include working with a speech therapist, occupational therapist, school psychologist, social worker, school nurse, or aide. You may want to visit public schools in your area to see the type of program they offer to special needs children.

A team of professionals will help evaluate your child and put a plan together. You may also ask your healthcare provider to review the plan. Ask and find out all the services that may be available for your child.

Sometimes medicine can help. Medicine can improve behaviors that may cause self-injury or interfere with school or social ability. These medicines must be prescribed by a healthcare provider experienced with their use in children with CDD.

How can I help my child?

  • Your child’s therapist can help you learns ways to work with your child at home. Over time, you may be able to help your child learn how to “read” facial expressions and start to understand other people.
  • Look for your child’s strengths. No one knows what your child may be able to do in time, so don’t set your expectations too low. Encourage your child to try new things.
  • Be patient with your child’s communication. He may not be able to put his needs and feelings into words. Watch your child’s body language for signs that he is upset or that something is wrong.
  • Join a support group. Support groups can help by sharing common concerns and solutions to problems with other families in the same situation. You can find these services through your healthcare provider, schools, therapy programs, and local and national support organizations.
  • See a mental health professional to help you cope with your stress.
Developed by RelayHealth.
Pediatric Advisor 2013.2 published by RelayHealth.
Last modified: 2012-12-17
Last reviewed: 2012-12-17
This content is reviewed periodically and is subject to change as new health information becomes available. The information is intended to inform and educate and is not a replacement for medical evaluation, advice, diagnosis or treatment by a healthcare professional.
© 2013 RelayHealth and/or its affiliates. All rights reserved.
Page footer image