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Childhood Disintegrative Disorder: Signs And Symptoms

Updated on November 23, 2013
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A Pervasive Developmental Disorder

Imagine a child of about age 4; bright, inquisitive, and with an extensive vocabulary that is growing day by day. He is drawing shapes and learning to recognize the letters of the alphabet in preschool. He loves his teacher and hugs her goodbye everyday when his parents pick him up.

Suddenly, one day the phone call comes. Your child is out of control. He has begun destroying toys, throwing tantrums and does not interact with his peers anymore. He refuses to be consoled by his teachers. Then you begin to notice that his vocabulary has dwindled from complete sentences to two and three word phrases. Perhaps he has stopped riding his tricycle or can't catch a ball anymore.

This heartbreaking scenario is real. The diagnosis may be childhood disintegrative disorder.

CDD Or Heller's Syndrome

Childhood disintegrative disorder (CDD), also known as Heller's syndrome, is a rare pervasive developmental disorder. An educator, rather than a doctor or scientist first recognized and listed the symptoms unique to this disorder in 1908. However, study and research for CDD started much later.

Just as Rett syndrome is mostly found among girls, CDD is more prominent in boys. Much rarer than autism, it strikes about 2 in 100,000. It is one of four other pervasive developmental disorders.


Symptoms Of CDD

  • sudden regression of acquired vocabulary
  • loss of motor skills
  • awkward gait
  • may start screaming, having tantrums
  • destructive to toys
  • loss of play skills
  • may become aggressive
  • stops interacting with peers
  • does not want to be consoled with hugs
  • loss of bowel and bladder control
  • becomes emotionally withdrawn
  • loss of eye contact
  • may appear to be reacting to hallucinations

Similarities Of Autism And CDD

Childhood disintegrative disorder has several symptoms in common with autism. Communication, socialization and the ability to learn new skills will be affected in the same way.

The striking difference from autism is the late onset of the symptoms of CDD. The loss of acquired skills can happen gradually or quite abruptly. Some parents have described the loss of skills as like "going to bed as one child and waking up as another."

On the average, the regression begins around age 4, but has been known to happen as late as age 10- late enough that the child may actually notice and ask what is happening to him. Vivid fantasies and peculiar logic may mimic childhood schizophrenia but it is the late onset of skill regression that distinguishes CDD.

Diagnosing CDD

Diagnosing CDD can be a challenge for doctors. The parents of suspected CDD victims will normally be referred to a neurologist or neuro psychologist. It will be helpful for the specialist that is working on a case if the parents can bring in home videos made over the time span that can show developmental milestones. There are several other conditions and disorders that will need to be ruled out. These include:

  • childhood schizophrenia
  • psychoactive substance poisoning
  • heavy metal poisoning
  • head trauma
  • Landau-Kleffner syndrome (LKS) a similar disorder but with a later onset age, 5.5 years of age on average and more severe language impairments

Cause Of CDD

There is currently no known cause for CDD. Because of the rarity of the disorder data for research has been difficult to collect. Theories for the cause include:

  1. genetic predisposition combined with environmental stress factors
  2. intra uterine viral or bacterial exposure
  3. birth trauma
  4. damaged immune responses that involve abnormal B-cell activation

Prognosis Of CDD

Childhood Disintegrative Disorder does not appear to cause death;however, a co-morbid medical condition such as a neuro-degenerative disorder can increase the risk. As with causes for CDD, the rarity of the disease hinders clear a clear prognosis.

It is currently accepted that the CDD child will likely have the symptoms of severe autism by age 10. The light in the dark is that the regression of skills is thought to level off. There are many good treatments for autism that will work to ease the heartbreak of this disorder. Parents should seek the help of their physician and the Local Education Authority for help and advice.

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    • Patty Inglish, MS profile image

      Patty Inglish 2 years ago from North America

      I appreciate you for sharing your insights and knowledge from a solid background of education and experiences. You are helping many parents when you do these Hubs. Thank you!

    • pstraubie48 profile image

      Patricia Scott 2 years ago from sunny Florida

      In all the years that I taught I never had a child who was actually diagnosed with this disorder but I had one young boy who fit this description. He was mainstreamed so he was in the regular classroom until he became totally out of control by anyone--which was about 6 weeks before school ended for the year.

      He moved the next year to another town so we never knew how things progressed with him.

      It is so hard for the child and family when this happens.

      I read with interest on such topics as I had many children, yes, sadly, many who had severe disorders. It was a challenge to try to teach when there were more than one of them in the same so called 'regular' classroom where they were placed in an effort to place them in the 'least restrictive environment." I wonder now how much good it did those children and the other 27 or 28 I had under my care.

      Well done, Rebecca.

      Angels are on the way to you today. ps

      Voted up+++ Shared

      His family moved at

    • jpcmc profile image

      JP Carlos 5 years ago from Quezon CIty, Phlippines

      This is devasting more to the parents than to the child. Family support is definitely important. All parents should be informed about CDD.

    • rebeccamealey profile image
      Author

      Rebecca Mealey 5 years ago from Northeastern Georgia, USA

      Thanks for the share and vote, you are welcome.

    • rebeccamealey profile image
      Author

      Rebecca Mealey 5 years ago from Northeastern Georgia, USA

      I know, it is heartbreaking. CDD is an unusual condition. Thanks for the votes!

    • CyberShelley profile image

      Shelley Watson 5 years ago

      Hello Rebecca, How awful to have your family's lives suddenly ripped apart with the onset of this condition. How heartbreaking for an older child, who realises that their life is going out of control. Up, interesting and useful.

    • cardelean profile image

      cardelean 5 years ago from Michigan

      Wow, my son just turned four a few days ago and I cannot imagine facing this with him. I have never heard of this before and am so glad to have learned about this very sad disease. Great information that you've shared here.

    • ChaplinSpeaks profile image

      Sarah Johnson 5 years ago from Charleston, South Carolina

      This was very interesting. I had heard of this disorder but did not know the symptoms. The similarity to autism is very striking. There seem to be several conditions or disorders with autism spectrum traits. Thanks for an informative and interesting hub!

    • rebeccamealey profile image
      Author

      Rebecca Mealey 5 years ago from Northeastern Georgia, USA

      Thanks thewritingowl. I am glad you son is making progress.It can be done!

      It is sad. I read some heartbreaking stories from blogger parents about it. Thanks Ardie

    • Ardie profile image

      Sondra 5 years ago from Neverland

      I've never heard of this horrible condition :( How awful this must be for the parents and the child to witness the regression. Thank you for raising awareness about CDD

    • thewritingowl profile image

      Mary Kelly Godley 5 years ago from Ireland

      I have heard of this and it sounds very traumatic, it is hard to watch your child disappear before your eyes. My son has A.S.D. but he is improving to watch him go backwards would be so awful. Good article.

    • rebeccamealey profile image
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      Rebecca Mealey 5 years ago from Northeastern Georgia, USA

      Thanks! CDD is just one of many syndromes.

    • lambservant profile image

      Lori Colbo 5 years ago from Pacific Northwest

      Fascinating. Never heard of this. Good research.