Re: CJD and other neurological disorders

[Guest guest]

This is the response the woman gave. (As you can see her doctors had

considered CJD.)

<< I don't think he has CJD, neither did the doctors involved in

his diagnosis at UC. He did not have a spinal fluid test, though. He does

not have the involuntary, irregular jerking movements described, and he's

had the dementia symptoms now for nearly 2 years... in their early stage

we thought it was just a worsening of the autistic symptoms or soemthing...

he often thinks he is different ages, like 3, or 6, or 13 on different

days, and " talks " with people he knew at those ages, and soemtimes with

" people " he/we never knew. He does have something called gate ataxia, I

think it is, where in walking he sometimes gets " stuck " and has to shuffle

a bit to get his gate back, but without the startled part described below,

and the rest of his body isn't rigid, just his feet stuck... Over this

past year his focus and initiative have dropped considerably, but not

entirely so either, certain days he'll do much better than other days,

might actually pick up a book and read a chapter on his own initiative, for

instance, but overall he's NOT " here " far more than he is these days....

<< From: LArmstr853@...

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. >>

[Guest guest]

Exactly my point. We are not doctors and cannot be soliciting our

recommendations to mothers of autistic children to test them for CJD. People

with major neurological disorders are usually being treated by

neurologists.... and YES, sometimes they do miss CJD but the chances of this

child having CJD were so very minor I see no reason to upset the mother

needlessly. We are not here to instill fear..... if I was that mother I

would have freaked out having gotten the description of the disease. I just

think she's been thru enough without sending her more when the chances are so

very minute of being CJD. My middle son, Zack has been complaining with

his vision, he can't see certain colors and sometimes he only sees one color

and the school nurse recently checked his vision and is refering me to a

specialist. Now I know FROM EXPERIENCE WITH DAD that vision is one of the

first symptoms of CJD. Zack is also very clumsy and falls quite a bit. The

combination of gait problems and vision problems are early symptoms of CJD but

I certainly won't be asking the doctors if this diagnosis should be

considered. Once again, just my 2 cents worth...[except I think now it may be

up to a dimes worth]. Liz.

<<

This is the response the woman gave. (As you can see her doctors had

considered CJD.)

<< I don't think he has CJD, neither did the doctors involved in

his diagnosis at UC. He did not have a spinal fluid test, though. He does

not have the involuntary, irregular jerking movements described, and he's

had the dementia symptoms now for nearly 2 years... in their early stage

we thought it was just a worsening of the autistic symptoms or soemthing...

he often thinks he is different ages, like 3, or 6, or 13 on different

days, and " talks " with people he knew at those ages, and soemtimes with

" people " he/we never knew. He does have something called gate ataxia, I

think it is, where in walking he sometimes gets " stuck " and has to shuffle

a bit to get his gate back, but without the startled part described below,

and the rest of his body isn't rigid, just his feet stuck... Over this

past year his focus and initiative have dropped considerably, but not

entirely so either, certain days he'll do much better than other days,

might actually pick up a book and read a chapter on his own initiative, for

instance, but overall he's NOT " here " far more than he is these days....

>>

[Guest guest]

I never state I am a doctor and in fact many times state I am not. I never

told the mother to test her child for CJD. I asked her if it had been

considered because of her son's age. As you can tell by her post she did not

get upset by my asking her. She has dealt with many problems and apparently

this is one more. She has been discussing it on many lists. To me a diagnosis

of Alzheimers, especially in a 22 year old, would be very upsetting too as

would all the other problems she is dealing with.

<< From: LArmstr853@...

Exactly my point. We are not doctors and cannot be soliciting our

recommendations to mothers of autistic children to test them for CJD.

People

with major neurological disorders are usually being treated by

neurologists.... and YES, sometimes they do miss CJD but the chances of this

child having CJD were so very minor I see no reason to upset the mother

needlessly. We are not here to instill fear..... if I was that mother I

would have freaked out having gotten the description of the disease. I just

think she's been thru enough without sending her more when the chances are so

very minute of being CJD. My middle son, Zack has been complaining with

his vision, he can't see certain colors and sometimes he only sees one color

and the school nurse recently checked his vision and is refering me to a

specialist. Now I know FROM EXPERIENCE WITH DAD that vision is one of the

first symptoms of CJD. Zack is also very clumsy and falls quite a bit.

The

combination of gait problems and vision problems are early symptoms of CJD

but

I certainly won't be asking the doctors if this diagnosis should be

considered. Once again, just my 2 cents worth...[except I think now it may

be

up to a dimes worth]. Liz.

<<

This is the response the woman gave. (As you can see her doctors had

considered CJD.)

<< I don't think he has CJD, neither did the doctors involved in

his diagnosis at UC. He did not have a spinal fluid test, though. He does

not have the involuntary, irregular jerking movements described, and he's

had the dementia symptoms now for nearly 2 years... in their early stage

we thought it was just a worsening of the autistic symptoms or soemthing...

he often thinks he is different ages, like 3, or 6, or 13 on different

days, and " talks " with people he knew at those ages, and soemtimes with

" people " he/we never knew. He does have something called gate ataxia, I

think it is, where in walking he sometimes gets " stuck " and has to shuffle

a bit to get his gate back, but without the startled part described below,

and the rest of his body isn't rigid, just his feet stuck... Over this

past year his focus and initiative have dropped considerably, but not

entirely so either, certain days he'll do much better than other days,

might actually pick up a book and read a chapter on his own initiative, for

instance, but overall he's NOT " here " far more than he is these days....

>>

>>