/Adrielle - MEDS MAKING THINGS WORSE

[Guest guest]

I was away when most of this discussion was going on, and I don't think I ever

saw the article that started it off, but if it wasn't this one below, you may

find the link interesting - from 2001 I think, so not horribly recent, but still

a good read. It was posted on the list here last yr in July. If it is the one

that appeared on here recently though, then um, ignore....

http://www.hopkinscme.org/courses/55-0424/page8.html

PS - I have the original article too somewhere (?) written by Dr Perucca about

AEDs and seizure aggravation, if anyone wants that or hasn't seen it before I

will have a dig and see if I can unearth it, but I think most of the main points

are covered here in this overview from Hopkins.

----- Original Message -----

From: byhisgrace08

Hello all,

I'm a little behind on posting, life has been hectic and I haven't

made it on-line for a few days. What a difference a few days makes

in this group! If you snooze you loose here!! ha ha I have a lot

of catching up to do!

Anyways....

I also wonder about Adrielle's condition and the role the meds have

played. " A " was diagnosed with global developmental delays at 18

mos., Epilepsy at 2 and Autism at 2.5. Her delays were very evident

which began the search. Her initial seizures were absence only.

They were only lasting 3 secs, but she was having several every

minute. We started with Topamax which did nothing for her. We

moved on to klonopin and ?? (can't think of which one came next

here), and somewhere around that time discovered complex partial

seizures. Adrielle then had a grand mal and they tried keppra,

which she had major problems with! She had pretty much no gross

motor function and had hallucenations. They took her off keppra

immediately and moved us to Dilantin as a temporary drug until they

could figure out what to do next. Then the drop seizures began.

She had a lot of them! They then moved us on to zonegran and

lamictal. With each drug we went on a honeymoon only to have it end

with something worse than where we started before. We have been on

the lamictal and zonegran longer than anything else, and keep seeing

the same pattern. seizures = increase meds = honeymoon = increase

in seizures, etc. We now have a diagnosis of LGS (since March 04)

Many times I have complained that my child seems to be getting worse

with each new drug and increase and I have been told the following

repeatedly: " Epilesy is a fluctuating illness. " " It can be

frustrating, but " E " isn't a condition that is predicable or

exact. " " All patients experience ups and downs and many changes

that can not always be controlled, and these changes should be

expected. "

While I understand there is truth to what they are saying, I wonder

if enough research has been done to find out what role the meds are

really playing?? I watched " First Do No Harm " and this question is

actually brought into the light during the movie. The Dr. states

that there is no scientific evidence on the effects good/bad of

these meds. No double blind studies etc. I realize this movie is

not real current, but are there any studies out there now?? I

didn't have time to read all the posts on this subject so if you've

already covered this I apologize!

I did read that some of you noticed cognitive and speech effects

from the meds. With " A's " delays and Autism, being clear on what

has been the meds and what is coming from other issues has been

tough. We are very anxious to find out what will happen after we

begin the diet and start to remove the meds!!! I'll let you know!!

, Mom to Princess Adrielle, starting the diet on 10/31/04