CJD and other neurological disorders

October 27, 1998

I am extremely troubled by this post. Obviously, this woman has been through

a lifetime of hell while caring for her son. Both autism and downs syndrome

are major neurologic disorders. Both of them could exhibit numerous CNS

symptoms, manifesting in countless ways. The fact that this child is 22

years old and certainly treated by a neurologist, it concerns me that she has

now been presented with information that will not only scare the life out of

her, but will likely discredit her in the eyes of his neurologist if and when

she presents the information to him. The chances of this child having CJD

are so minute I see no point in relaying information about such such a

devestating disease and needlessly scaring the life out of her. Early onset

alzheimers is definately a concern with our group as most of us suspect that

it is often CJD and not Alzheimers BUT I wouldn't go as far as to include a 22

year old Downs syndrome/autistic child as a statistic of misdiagnosis. I

realize we all want answers as to how and why our loved ones died from CJD but

I don't think contacting desperate mothers with catastrophically ill children

will help anyone. Not trying to make anyone mad, it's Just my 2 cents worth.

Liz.

-----Original Messages:------------------

I wrote his mother and asked about his symptoms. I also included CJD symptoms

after of course saying I hope he doesn't have it. I haven't heard back.

Debbie

I got this on another mailng list. Does it sound like CJD because of age?

<< Hi folks, I am a new member on this list. My son is 22, has downs syndrome

and mild autism, and last January was diagnosed with extremely early onset

alzheimers, although they said there was likely frontal lobe involvement as

well... I have tried to do some research on the net and as of yet have not

run across information about folks developing this condition at such a

young age. I am aware of the brain chemistry correlation between downs and

alzheimers, but that usually doesn't set in till at least the 40's... just

looking for information about such extremely early-onset alzheimers...

sometimes I think, maybe wishfully so, that their diagnosis is incorrect

because he is so young, that maybe he has a psychosis instead, which would

be hard in its own way, but at least the prognosis for treatment would be

better... Part of the diagnosis is based on behavior the doctors are

considering gate ataxia (sp?), but I've seen other folks with autism do

similar " stucknesses " in stance... The condition does seem to be

progressing, although not across the board, so its complicated to say. I

know noone can diagnose my son from afar, but helping me find more

imformation about others of his young age with such a condition would be of

great assistance. Thanks >>

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