Zoe / autism, Epilepsy drugs, Depacote and Epilim

[Guest guest]

In einer eMail vom 13.03.02 05:31:23 (MEZ) Mitteleuropäische Zeit schreibt Zll51@...:

[ ] Epilepsy drugs as a Cause of "learning disabilities"

Datum:13.03.02 05:31:23 (MEZ) From: Zll51@... (zoe88025)

Reply-to:

The link is to an article about a man who was diagnosed with epilepsy at the age of 14 months. He was heavily drugged and labled "special needs" his entire life. It was not until he was in his mid-twenties when he was taken off the drug (sodium valporate) that it was realized his "mental deficiency" was due to the drug.

http://news.bbc.co.uk/hi/english/health/newsid_435000/435541.stm

Zoe,

I read your post and the site you recommended above. It is heartbreaking and reminds me of a case here, when the adoptive parents of an autistic child consulted me on communication problems. They were doubtful whether their child would ever be able to communicate with them.

I told them about an autistic man, 38 years old, who had been kept in an institution, considered as intractable, nonresponsive, introvert, taking no interest in his surroundings, in what he saw on TV together with others, mentally disabled etc etc. about any negative label you can think of.

Then someone had the idea to try "facilitated communication" with him, using a computer, letting his hand guide the hand of the therapist, and a member of parliament fostered the project. As soon as he had learned the technique, they asked the patient whether he had a wish.

And his first wish was:

An encyclopedia of European history.

What a life! 38 long years of not being understood, of not being taken seriously, of not being recognized in his inner wealth.

This seems pretty much the same that had been done to the English patient by giving him valproic acid or sodium valproate, which are the agents in Depakote and Epilim.

These agents are known to cause hyponatremia which in turn can cause psychosis.

And it is not true what the English press say about this case: it is definitely not unique! On the contrary, many cases are known with valproate causing these symptoms of autism, it is just a matter of degree or scaling in the symptoms.

I suspect that many a time adverse conditions in people taking drugs with epilepsy are iatrogenic. When will doctors ever care for the over all wellbeing of their patients?

Zoe, this was again a very enlightening contribution from you, a million thanks to you!

Katharina

[Guest guest]

Katharina,

I saw a similar situation here, with no happy outcome. I worked as

an aid in a school for retarded children. One child, was

labeled " retarded " and autistic-no language and no outward

communication. A worker and I noticed that during nap time when the

room was darkened, would go about and mimic some of the

activities we'd done earlier, like making car sounds as we'd done

when playing with a child in a wheel chair.

What was clear to us, is all of the sounds he was making and the

actions, braking, honking etc., were entirely correct. I did some

poking around and found some notes in the teacher's log stating she

had heard this child speak.

The other worker and I decided to make pay some extra attention

to and see if he could find ways to communicate. The child who

was wheelchair bound let us use her chair during nap time. We used

this period (he seemed to feel safe in the dark)to " drive "

around speaking gently to him and saying words to match our actions.

After a few minutes we would stop and leave him alone in the

middle of the dark room-the one situation where he seemed to feel

safe. At first, nothing. Several minutes later, he got out of the

chair and began driving it, making all the same sounds and words we

had done earlier with no mistakes at all.

Watching him with the other children we could see that he was

taking things in, but could not " coordinate " communicating out. We

devised a system that worked quite well. , the other worker

(also my housemate) and I found that Billie could respond

appropriately if we did not speak to him directly, but spoke about

him to someone else. In a game situation, might look at me and

say, " I think Billie wants to jump, " and he would then be able to do

so. In this way, he began to be able to participate in the

activities, but not if he was spoken to directly. One-to-one direct

communication seemed to overwhelm him in some way, so we avoided

this.

We began putting him in the front of the van with us when taking

the kids home in the afternoon. We'd suggest that he wanted to look

at the telephone pole, the cars, the sky or anything that would

direct his attention outward to the world around him. It reached a

point where if we said he looked tired, he felt safe to put his head

down and rest. It became clear this child had very good language

comprehension, his responses were invariably appropriate if we spoke

about and not to him. All his actions were quite on par with his age

group as well. The language abilities were there, but something

seemed to scramble in the process of communicating. I was unable to

keep the job much longer and his progress was denied as impossible by

his mother and his social worker, so I suspect he was never allowed

to develop as he was capable. That child touched my heart and I've

never forgotten him. I'm not sure his situation was unique,

especially considering the young man you mentioned. These children

can communicate, clearly and as intelligently as anyone, but need

help to discover and develop the means to do so. While researching on

viruses, I came across another reference to tegretol. In the Merck

Manual, Tegretol, along with some other drugs, including ibuprofen,

is a recognized non-infectious cause of Aseptic Meningitis

(inflammation of the lining of the brain and spinal chord). What will

this do to a child's brain and behavior, not to mention cognitive

abilities and development?

The drugs may well be causing much of what is thought to be

cognitive deficits in children dianosed with epilepsy.

You must have been very moved by the person you worked with also.

Zoe