What is Childhood Disintegrative Disorder, It's Treatment And Symptoms

By: Marie Miguel

Updated July 16, 2021

Medically Reviewed By: Lisa Cooper

Childhood Disintegrative Disorder, also known as Heller's syndrome or disintegrative psychosis is a rare disorder. This condition affects children over the age of three years or at least two years of development without issue. This disorder is also associated with seizure activity, and in at least half of the cases, abnormal EEG results are present. EEG or electroencephalography is a method of recording electrical activity in the brain.

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What Is CDD?

Childhood disintegrative disorder or CDD for short is listed under autism spectrum disorders. New descriptions due to a better understanding of autism have led to better diagnosing of spectrum disorders. These advances in the understanding of autism spectrum disorders have led to the following disorders falling under the grouping of autism spectrum disorders -

  • Autistic Disorder - Autism is a disorder that causes problems with social interaction, is characterized by repetitive behaviors, and causes problems with communication.
  • Asperger Syndrome - A developmental brain disorder characterized by problems with behavior, social skills, and coordination.
  • Pervasive Developmental Disorder - A disorder that is characterized by avoiding eye contact, problems controlling emotions, a high pitched or flat tone of voice, problems communicating thoughts through language, and repetitive behaviors.
  • Childhood Disintegration Disorder - A disorder characterized by loss of achieved developmental skills that occurs after the age of three years old.

The symptoms of CDD are severe and obvious, and researchers are still searching for the cause of this disorder. Children with this disorder develop normally; they achieve the normal milestones of development, then at some point after the age of three, they begin to lose the skills they have already achieved. A child may lose the skill of language or lose the ability to communicate effectively. Children with this disorder suffer a sudden reversal in social skills, motor skills, and language skills.

Before modern research into CDD, it was thought that this disorder was a medical disorder with identifiable medical causes. Eventually, researchers realized that the same medical or neurological cause does not always cause CDD. The cause is elusive, the symptoms of this disorder are well documented, but the actual cause is not.

The Symptoms of Childhood Disintegrative Disorder

The symptoms of childhood disintegrative disorder revolve around a loss of achieved skill sets. The symptoms become obvious at or after the age of three after the child has learned to speak, walk, eat without help, and use the potty. The symptoms can become severe, and seizures and abnormal EEG's are common. Although the disorder usually surfaces between the ages of three and four, it can occur up to the age of ten.

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The following is a list of symptoms of childhood disintegrative disorder -

  • Loss of the ability to speak or communicate effectively
  • Loss of social skills, inability to interact with others, seeming to ignore others
  • No longer communicating needs such as hunger, fatigue, or water
  • Irritability
  • No longer able to control emotions
  • Loss of the ability to walk
  • Loss of the ability to understand the language
  • Loss of hand-eye coordination

The symptoms of this disorder can range in severity. A child who has learned to wash themselves, brush their teeth, use the toilet, or feed themselves, and has lost the ability, are all examples of CDD symptoms. This is a complex disorder, and these symptoms may seem to follow new seizure activity, a long period of illness, or appear out of the blue.

The symptoms of CDD are like all the disorders listed under autism spectrum disorder; the main difference is how they present. A specialist must diagnose this condition by careful analysis of the symptoms, the onset, and the severity. Although the symptoms of CDD progress over time, some individuals will progress slower than others.

The rarity of this disorder makes it difficult to give an exact prognosis. Some children regress faster, some slower, and the extent of regression can vary from case to case. Research into this disorder shows that some children can recover lost skills, others may stop regressing and re-learn, while other continue to regress. It is important to recognize the symptoms of CDD as early as possible so that a diagnosis can be made, and therapy can begin.

Treatment Of CDD

There is no cure for CDD, but early intervention and therapy is essential to lessen the severity of the symptoms. Treatment for CDD is about slowing the loss of acquired skills and therapy to re-learn what has been lost. Some children respond better than others, but every little bit counts. Before treatment begins, the child must be evaluated and diagnosed.

The therapies are the same as those used for the treatment of autism. Medication such as anti-convulsant may be used is seizures are diagnosed, and antipsychotics may be prescribed to control other severe behavioral problems that may develop. Therapy for CDD includes:

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  • Medication therapy
  • Behavioral therapy
  • Environmental therapy

Behavioral Therapy

Behavior therapy is a type of therapy that is used to slow down the loss of skills and help re-learn when possible. Qualified, certified professionals develop plans for slowing loss and re-learning using a system of rewards for desired behavior. Speech therapists, occupational therapists, and physical therapists have different levels of expertise to deliver customized therapy. A behavior analyist will first study the child's behaviors and then use that analysis to develop a care plan.

Environmental Therapy

This therapy is designed to provide sensory enrichment that can ease the symptoms of CDD. Sensory enrichment therapy is used to better the quality of life for those with spectrum disorders. The exact type of sensory enrichment is developed by a specialist to provide the right type of enrichment for a customized experience. This therapy is not designed to slow down the loss of skills or re-learn skills that are lost; it is meant to provide a means of interaction and communication that improves quality of life.

Family and In-Home Care Givers

Children with this disorder can respond well to therapy; it is not known why some respond better than others. This condition is rare; research is based on the limited number of cases available to study. Support for parents of children with CDD is essential. Support groups for families are a great resource, they can help in many ways, and they are an invaluable source of understanding and information.

Family therapists are also an invaluable resource for families of children diagnosed with CDD. The diagnosis can be overwhelming for loved ones, talking with a qualified family therapist can help everyone through this emotional time. Family therapy or group talk therapy can provide an outlet and support for the all the changes the family is facing after diagnosis.

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Treatment for a child with CDD involves the family as well. A family member must learn how to deal with all the mental and physical changes their child is facing. Siblings must adjust to new routines, as parents work to accommodate the changes to their daily routines. All family members must learn about the disorder and learn how to manage life with the changes taking place.

At some point, the regression experienced by those who suffer from CDD will begin to affect bodily function. An individual with this condition may need extra support from a professional caregiver as they grow older. Although it may seem a long way off, as parents and family members age it can become more difficult to care for the physical needs of loved one with CDD. An in-home caregiver can make it easier as parents age, but they can also be a huge help for a young child as well.

An in-home caregiver is someone who knows all about the disorder, and they are trained to handle any situation that arises. This extra help can give parents and other family members time to relax and take care of the other demands life requires. An in-home caregiver also gives the child interaction with someone other than a family member; this can be therapeutic as well.

Personal Aide

Another option for care is a personal caregiver, a personal aide. A child with CDD requires around the clock supervision and care. A personal caregiver or personal aide is someone who provides that supervision and care when the primary caregiver cannot. Children with autism spectrum disorders attend school with aides who help them get in class. Depending on the regression, a child with CDD may still attend school for a period, and if the disorder stops progressing, they may remain in school.

Caregivers, whether in-home or person aide, deliver the same quality of care and supervision the primary caregiver does. These professionals will provide this care in the absence of the primary caregiver or alongside the primary caregiver. This type of care is also beneficial for helping individuals with this disorder deal with life situations, providing quality of life and exposure to new situations.


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