Was Childhood Disintegrative Disorder ever real?

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CDD, the real age of regreressive onset is ages 2-10 and possibly eariler than that like 18 months old. I myself was a normal kid until I regressed at age 2 1/2 into autism. If you were to put me just after my regression to a kid who regressed into CDD at age 2 1/2 in the same room, you would find no difference. So between the time I regressed and the time I made significant improvement (at age 6, I was diagnsoed Aspergers), I had also fit the criteria for Childhood Disintegrative Disorder in addition to Kanner's Autism with regression. This is because distinguishing Kanner's Autism with regressive onset at ages 2-3 with Childhhod Disintegrative Disorder with onset at ages 2-3 can be so challanging, it would seem nearly impossible to distinguish the two labels. During my regression, I not only lost speech, but I also lost motor skills, socio-communication skills (my parents thought I went deaf and I did not want to talk to people and pushed them away), and possibly some self care skills. However, the outcome before and in the long time after the regression could make more clear differences between CDD and Kanner's Autism with regression. One difference before, like you said, even tough I regressed at the same age as some cases of CDD, the time around the beginning of regression is heralded by hallucinations, night terrors, really bad nightmares that is intense over long periods of time, severe anxiety, and really bizzare behavior, which of none I had during or around my regression. Another thing that happens in CDD kids before their regression, which did not happen to me before my regression is that they ask vebally "What is happening to me?" or "Make it go away!", things like that. Another difference is proubably, siezures, which I did not have, not even during my regression. Many CDD kids have siezures since the regression started and the siezure rate in CDD patients is over 70%, especially during the teenage years. The long term outcome is very reliable because if I what I had at age 2 1/2 was CDD, there could of been 2 outcomes. A) I would look exactly like the guy below today but also with intellectual disabilites:


Or B) Around the time I regressed or some time after, I would of also been revealed to be suffering symptons of some rare nuerodegenrative disease (ie Juvenille Onset Tay Sachs) that is associated with or is persumably caused CDD, so I would of been getting worse over time after the initial regression and in some cases of this scenario, I would of been looking like this dude below but also with a mechanical breathing tube or have died a few years after the initial regression I had at age 2 1/2. That is what Theodore Heller found in a few of his patients a few years after studying them:

But in real life, today, if you were to put me and someone who has Aspergers with no speech delay (and very early speech) in the same room, you would find no difference. So I have made the clear difference between CDD and Regressive Autism here. So you have to go beyond the initial diagnostic ritieria and into deeper more sophisticated characteristic symptonalogy of both symptons to find the diffrence.

My son regressed and was diagnosed with autism a 2 years of age. We recently went thru all the test with our genetic doctor. CCD and Autism are different. To simply explain two things that are not simple to explain - CCD generally presents itself after a longer length of normal or appeared normal development and is much more severe in terms of skills lost, in which our doctor was looking for additional losses in motor skills (big & small movements). When these occur, he said more is going wrong neurologically than with typical late onset/regressive type autism. He also said CCD can develop in a much worse fashion, like something is periodically/continually hitting a reset button on part(s) of a persons brain, except that when the brain tries to develop again its in worse state than before, and the result is a person with very severe impairments. As for CCD being caused by X related syndromes or other disintegrative disorders, I can't say as when he gave us the results he simply said there are worse things to have than some forms of autism.

It was difficult to understand at first, my son has autism, right genetics doctor? That's what his pediatric doctor said. Um, no. His explanation of autism was much clearer. Autism is just a observed set of difficulties in behaviors generally clumped together (communication/socialization/repetitive). It is not what my son has, rather autism is the result of some underlying issue(s) which causes the brain to develop differently and in turn those behaviors. If he had a magic wand, and knew every cause, the term Autism wouldn't really be used anymore, rather "you/your child has A, B, C condition(s)."

So getting back to CDD - it is very different than "late onset or regressive autism" because even though generally not a lot of genetic/epigenetic/other causes are know for either CDD or ASD(s), the observed impairments are so different that they must be classified differently.

Note: this is the best I can explain what I was told by a doctor who admittedly said not all ASD(s) or neurological differences/impairments can be explained by science (some will never be).

Tay Sachs and CDD are completely different. I could see how in early stages a kid with one of the late onset types of Tay Sachs could be misdiagnosed as CDD, but CDD is not fatal and Tay Sachs is. With CDD, they regress to a certain point and then stop, and start very slowly gaining new skills. In contrast, with Tay Sachs the regression continues until they die.

As for Tuberous Sclerosis, that would be more likely to cause a symptom picture similar to CDD as they can also have start-and-stop regression. However, it would still be a distinct condition, because in TS there are physical signs (eg tumors visible on MRI) that are not present in CDD. TS also responds to different treatment, because in TS you can surgically remove some tumors to improve functioning, while no surgical treatment is available for CDD.

Just because two conditions cause similar symptoms or can be mistaken for each other does not make them the same.

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I read on the Wikipedia Artcile of CDD that Juvenille Onset Tay-Sachs Disease (which is labled in the artcile as a "Lipid Storage Disorder") and Tuberous Scerlious alongside with Subacute Sclerosing Panencephalitis (like Tay-Sachs except that it is caused by a Measles virus from a Measles infection years ago) are considered associated conditions of CDD. Look it up under the "Causes" section of this article:http://en.wikipedia.org/wiki/Childhood_disintegrative_disorder
I thought that the Associated conditions cause CDD. That's what I thought the term "Associated Conditions" means. Maybe I misused that term.

They are some cases of CDD that had a dramatic regression as young as 2 and even earlier than that like 15 months old. I myself was a NT until I was like 2 1/2 years old when I regressed. At the onset, I did not want to talk to people and pushed them away. My parents thought I went deaf. It was NOT CDD but regressive autism, very similar. But since some cases of CDD regress at the same age range as regressive autism (ages 2-3), a doctor who knows CDD would have a very hard time telling whether I had CDD or Regressive Autism because if you were to put me when I was 2 1/2 years old and a kid who really has CDD and regressed at age 2 1/2 years old in the same room, you would find no difference. When I read the book, 'When Autism Strikes', the regressive patterns of some CDD kids had a lot in common with my regression like running back and forth and losing social and communication skills. In fact, between the time I regressed and the time I improved (diagnosed Aspergers at age 6), I had fit the official criteria for 'Childhood Disintegrative Disorder'.
So with these being said, It is very possible that a doctor who knows CDD could've officially diagnosed me as having "Childhood Disintegrative Disorder" when I was 2 1/2 years old.