Re: question: autistic child develops catatonia at age 12: anyone else hear of this?

[Guest guest]

Hello-I remember a movie called Lorenzo's Oil about a boy who became catatonic

because of a rare illness called ALD-adrenoleukodystrophy. The movie starred

Nick Nolte and Sarandon as the parents of a young boy who became catatonic

and the father discovered that a certain oil would have the miraculous effect of

providing a cure to others with the same disease. I found the end of the movie,

when the photos of the children who have been cured are shown, to be very

moving. I don't know if the autistic boy you mention has this type of illness,

but it's worth seeing the movie and looking into it. I hope this helps the

family and their son.

Gayle

question: autistic child develops catatonia at age 12: anyone

else hear of this?

I have a question to the group. I know many of you are incredibly informed on

the medical side of autism.

So my question is this: Have any of you come across any information on a child

who has regressive autism, has limited language, develops physically typical

despite this, and suddenly develops catatonia that progresses to the point where

the child is no longer able to walk unassisted, limited language is completely

gone, unable to eat, no longer having the ability to chew because he is frozen

if you would, and stays frozen in?rigid body movements.

A friends child is going through this. After onset, the doctors fearing

seratonin syndrome because he was taking conservative amounts of an ssri

(celexa) and wellbutrin, completely removed him from these meds. I guess they

know best, but despite removing him from the ssri and dopamine drugs, his

catatonia has gotten incredibly worse. He is now 14, and honestly, it does not

look good.

My friend has been going to the medical university in our state for help. They

have been great about bringing in experts in catatonia, but no one has been able

to figure out what is causing this.

Have any of you come across any information of a child that has experienced

this? Thank you for any information you can share.

[Guest guest]

That's exactly what I was thinking! I would also seek the advise of a

genetic/metabolic physician, as soon as possible. HTH,

@...: gvizjazz@...: Sun, 30 Mar 2008 11:13:05

-0400Subject: Re: question: autistic child develops catatonia at age 12:

anyone else hear of this?

Hello-I remember a movie called Lorenzo's Oil about a boy who became catatonic

because of a rare illness called ALD-adrenoleukodystrophy. The movie starred

Nick Nolte and Sarandon as the parents of a young boy who became catatonic

and the father discovered that a certain oil would have the miraculous effect of

providing a cure to others with the same disease. I found the end of the movie,

when the photos of the children who have been cured are shown, to be very

moving. I don't know if the autistic boy you mention has this type of illness,

but it's worth seeing the movie and looking into it. I hope this helps the

family and their son. Gayle question: autistic child develops catatonia at age 12: anyone

else hear of this?I have a question to the group. I know many of you are

incredibly informed on the medical side of autism. So my question is this: Have

any of you come across any information on a child who has regressive autism, has

limited language, develops physically typical despite this, and suddenly

develops catatonia that progresses to the point where the child is no longer

able to walk unassisted, limited language is completely gone, unable to eat, no

longer having the ability to chew because he is frozen if you would, and stays

frozen in?rigid body movements. A friends child is going through this. After

onset, the doctors fearing seratonin syndrome because he was taking conservative

amounts of an ssri (celexa) and wellbutrin, completely removed him from these

meds. I guess they know best, but despite removing him from the ssri and

dopamine drugs, his catatonia has gotten incredibly worse. He is now 14, and

honestly, it does not look good. My friend has been going to the medical

university in our state for help. They have been great about bringing in experts

in catatonia, but no one has been able to figure out what is causing this.Have

any of you come across any information of a child that has experienced this?

Thank you for any information you can share.[Non-text portions of this message

have been removed]

[Guest guest]

Hi-

I have to assume that they are looking at everything

possible and checking for all known reasons for

catatonia. I hope that they are likewise not ruling

out things simply because they are not presenting in

the labs or symptoms (ie encephalitis or viral

infection of the CNS). My biggest concern is relying

on labs and not treating for possible viral infection

in the absence of signs (like fever, positive findings

in the spinal fluid, etc).

I forget what virus I was reading about just 2 weeks

ago that has been connected to catatonia, but there

are also findings of HHV6 associated with it if I

remember ... I wouldn't assume that's the case ...

more often it seems endocrine?? Like cortisol,

others... And a genetic break... Studies in

schizophrenia could be helpful ... and BTW many of the

studies on schizophrenia are responsible for the

findings of the neuro-immune interactions in other

disorders ie autism. I would also look for AIDS

related cases of catatonia.

What sorrow for the family. How very terrifying. I

pray for the doctors that they may find an answer.

Never give up!!!! When one can't, find another.

I'd get them to request a major antiviral though,

" just in case " - insisting that it is always possible

that a CNS infection is not presenting in an obvious

pattern. But I don't get the feeling that this is the

case for this child.

Anybody who has the chance to ask Dr Goldberg during a

consult, please give it a shot. Occasionally he will

give thoughts that could be related to , or

perhaps recommend someone? It wouldn't be his place

to comment on a child he knows nothing about but

there's nothing wrong w/thinking of ideas.

We will pray for the family and their son.

--- LINDA A <lsa5885@...> wrote:

>

> That's exactly what I was thinking! I would also

> seek the advise of a genetic/metabolic physician, as

> soon as possible. HTH,

>

>

> @...: gvizjazz@...:

> Sun, 30 Mar 2008 11:13:05 -0400Subject: Re:

> question: autistic child develops catatonia at age

> 12: anyone else hear of this?

>

>

>

>

> Hello-I remember a movie called Lorenzo's Oil about

> a boy who became catatonic because of a rare illness

> called ALD-adrenoleukodystrophy. The movie starred

> Nick Nolte and Sarandon as the parents of a

> young boy who became catatonic and the father

> discovered that a certain oil would have the

> miraculous effect of providing a cure to others with

> the same disease. I found the end of the movie, when

> the photos of the children who have been cured are

> shown, to be very moving. I don't know if the

> autistic boy you mention has this type of illness,

> but it's worth seeing the movie and looking into it.

> I hope this helps the family and their son.

> Gayle question:

> autistic child develops catatonia at age 12: anyone

> else hear of this?I have a question to the group. I

> know many of you are incredibly informed on the

> medical side of autism. So my question is this: Have

> any of you come across any information on a child

> who has regressive autism, has limited language,

> develops physically typical despite this, and

> suddenly develops catatonia that progresses to the

> point where the child is no longer able to walk

> unassisted, limited language is completely gone,

> unable to eat, no longer having the ability to chew

> because he is frozen if you would, and stays frozen

> in?rigid body movements. A friends child is going

> through this. After onset, the doctors fearing

> seratonin syndrome because he was taking

> conservative amounts of an ssri (celexa) and

> wellbutrin, completely removed him from these meds.

> I guess they know best, but despite removing him

> from the ssri and dopamine drugs, his catatonia has

> gotten incredibly worse. He is now 14, and honestly,

> it does not look good. My friend has been going to

> the medical university in our state for help. They

> have been great about bringing in experts in

> catatonia, but no one has been able to figure out

> what is causing this.Have any of you come across any

> information of a child that has experienced this?

> Thank you for any information you can

> share.[Non-text portions of this message have been

> removed][Non-text portions of this message have been

> removed]

>

>

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

Special deal for users & friends - No Cost. Get a month of Blockbuster

Total Access now

http://tc.deals./tc/blockbuster/text3.com

[Guest guest]

A 17 yr old boy I know in our town suddenly rapidly lost functioning over the

course of a few days. Nothing showed up on his labs-no drugs, disease etc. It

was so bizarre that the doc's at the university hospital sent his test results

all over the country looking for help. It was finally determined that he had a

parasite in his brain! He is now recovering.

question:

> autistic child develops catatonia at age 12: anyone

> else hear of this?I have a question to the group. I

> know many of you are incredibly informed on the

> medical side of autism. So my question is this: Have

> any of you come across any information on a child

> who has regressive autism, has limited language,

> develops physically typical despite this, and

> suddenly develops catatonia that progresses to the

> point where the child is no longer able to walk

> unassisted, limited language is completely gone,

> unable to eat, no longer having the ability to chew

> because he is frozen if you would, and stays frozen

> in?rigid body movements. A friends child is going

> through this. After onset, the doctors fearing

> seratonin syndrome because he was taking

> conservative amounts of an ssri (celexa) and

> wellbutrin, completely removed him from these meds.

> I guess they know best, but despite removing him

> from the ssri and dopamine drugs, his catatonia has

> gotten incredibly worse. He is now 14, and honestly,

> it does not look good. My friend has been going to

> the medical university in our state for help. They

> have been great about bringing in experts in

> catatonia, but no one has been able to figure out

> what is causing this.Have any of you come across any

> information of a child that has experienced this?

> Thank you for any information you can

> share.[Non-text portions of this message have been

> removed][Non-text portions of this message have been

> removed]

>

>

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________________

Special deal for users & friends - No Cost. Get a month of Blockbuster

Total Access now

http://tc.deals./tc/blockbuster/text3.com

[Guest guest]

How did they find out he had a parasite in his brain? Do you know?

davswife@... wrote:

>

> A 17 yr old boy I know in our town suddenly rapidly lost functioning

> over the course of a few days. Nothing showed up on his labs-no drugs,

> disease etc. It was so bizarre that the doc's at the university

> hospital sent his test results all over the country looking for help.

> It was finally determined that he had a parasite in his brain! He is

> now recovering.

>

> question:

>

> > autistic child develops catatonia at age 12: anyone

>

> > else hear of this?I have a question to the group. I

>

> > know many of you are incredibly informed on the

>

> > medical side of autism. So my question is this: Have

>

> > any of you come across any information on a child

>

> > who has regressive autism, has limited language,

>

> > develops physically typical despite this, and

>

> > suddenly develops catatonia that progresses to the

>

> > point where the child is no longer able to walk

>

> > unassisted, limited language is completely gone,

>

> > unable to eat, no longer having the ability to chew

>

> > because he is frozen if you would, and stays frozen

>

> > in?rigid body movements. A friends child is going

>

> > through this. After onset, the doctors fearing

>

> > seratonin syndrome because he was taking

>

> > conservative amounts of an ssri (celexa) and

>

> > wellbutrin, completely removed him from these meds.

>

> > I guess they know best, but despite removing him

>

> > from the ssri and dopamine drugs, his catatonia has

>

> > gotten incredibly worse. He is now 14, and honestly,

>

> > it does not look good. My friend has been going to

>

> > the medical university in our state for help. They

>

> > have been great about bringing in experts in

>

> > catatonia, but no one has been able to figure out

>

> > what is causing this.Have any of you come across any

>

> > information of a child that has experienced this?

>

> > Thank you for any information you can

>

> > share.[Non-text portions of this message have been

>

> > removed][Non-text portions of this message have been

>

> > removed]

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> > [Non-text portions of this message have been

>

> > removed]

>

> >

>

> >

>

> __________________________________________________________

>

> Special deal for users & friends - No Cost. Get a month of

> Blockbuster Total Access now

>

> http://tc.deals./tc/blockbuster/text3.com

> <http://tc.deals./tc/blockbuster/text3.com>

>

>

[Guest guest]

Just a thought… my son started his journey with a seizure disorder

at 7 months after typical to advanced early development. He made it

through with moderate delays, but was social, had good motor skills, and

had some verbal language by 2-1/2. After a double ear infection

accompanied by a 104 fever for a few days, all his gains were lost [he

could no longer feed himself, walk unassisted, speak, smile, interact,

play...] While he did not suffer any encephalitis, the insult created

excessive electricity that pushed him into a new seizure disorder -

Lennox Gastaut [an epileptic encephalopathy]. He did not have catatonia,

but his primary seizure type involved muscle stiffening and I believe he

also suffered from extended periods of non convulsive status

epilepticus. I won't go into detail because 's story is

probably not applicable and is very involved [though I'm happy to

answer any questions]. So, it's a long shot, but may be worth

getting an EEG to see if anything like this might be going on. And a bit

of hope - against all odds and predications, made it through

this time - seizure free, very loved, very happy and very active.

He's got a long way to go and still doesn't have verbal

communication, but we feel he is on the path to recovery.

Whitney, mom to [6-1/2]

>

> I have a question to the group. I know many of you are incredibly

informed on the medical side of autism.

>

> So my question is this: Have any of you come across any information on

a child who has regressive autism, has limited language, develops

physically typical despite this, and suddenly develops catatonia that

progresses to the point where the child is no longer able to walk

unassisted, limited language is completely gone, unable to eat, no

longer having the ability to chew because he is frozen if you would, and

stays frozen in?rigid body movements.

>

> A friends child is going through this. After onset, the doctors

fearing seratonin syndrome because he was taking conservative amounts of

an ssri (celexa) and wellbutrin, completely removed him from these meds.

I guess they know best, but despite removing him from the ssri and

dopamine drugs, his catatonia has gotten incredibly worse. He is now 14,

and honestly, it does not look good.

> My friend has been going to the medical university in our state for

help. They have been great about bringing in experts in catatonia, but

no one has been able to figure out what is causing this.

>

> Have any of you come across any information of a child that has

experienced this? Thank you for any information you can share.

>

>

>

>

>