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Kaitlynn was born September 29th, 2004. We have seen neurology specialists from St. Louis to New Orleans since she was born. Unfortunately, we still do not have a definitive diagnosis for Kaitlynn. The best guess her doctors have to offer is mitochondrial disease.

Heller’s Syndrome Often Confused with Autism | Healthmad

9:51 AM Edit This 36 Comments »
Heller’s Syndrome Often Confused with Autism | Healthmad

Heller’s Syndrome (also known as (CDD) Childhood Disintegrative Disorder and disintegrative psychosis) is an extremely rare syndrome. Incidence is only one per 50,000 children, about sixty times less frequent than autism. However, research often questions the prevalence due to the similarity between Heller’s Syndrome and autism causing under-diagnosis / misdiagnosis.


Velvet Over Steel said...

I had never heard of this before. Very sad, but interesting information that can hopefully help someone at least have some answers. Can I add this to my link list? Thanks for sharing!

jo oliver said...

Sure, Coreen feel free to add the link:)

Anonymous said...

My son now 24 was diagnosed with disintegrative disorder. He had 2 and a half years of 'normalish' development. he had begun to talk in 2 word sentences and was getting on well with his toileting. He had an operation( gommits) and came out of hospital a different child. The toys he had played with he never touched again. His speech changed from 2 word sentences to long sentences overnight always using the words in the same order. He sat in the corner with his back to me flicking through books. The long sentences shortened and he declined day by day for about 7 years.Everything that made him who he had been went. He became hyperactive, aggressive unable to talk or understand much more than a baby. his motor skills have remained like a 2 and a half year old. He now lives in an adult placement with a full team of carers- he needs 2 or 3 to go out in the car with him

Cindy said...

To Anonymous - I really feel for you. The same thing happened to my son at eight years old and he is now 18 and has never been the same. What was worse is that he was acutely aware of his loss of skills (which I think is where the aggression some from - frustration). All the docs want to do is diagnose him with Autism - but I think its more than that. Even his speech changed. He lost most of his vocabulary and his speech and processing of information became very slow. Good luck to you my dear - and God Bless your family and your son.

mrsellabbar said...

My son sounds the same, I never came across this before, its the anger that developed and the loss of skills.
I will ask the doctor if its possible, the incontince, motor skill problems.My son spoke sentences until around 20 months/2years months.
His behaviours terrible, It seems as though only us as a family can manage 2:1 for the worse bits.
I show him pictures of him doing things when he was younger, Its how I motivate him!
I always felt my son was different to all the other people I met with autism.

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