Re: MEDS MAKING THINGS WORSE!/Adrielle's Mom

[Guest guest]

You describe our exact experience with AEDs. We had the same doctor

commennts " Siezure condition's change " , " Moving Target " " These kinds

of seizures are the most stubborn to control " , " It is his brain

causing the learning troubles " (Yes, his brain on drugs!). Our

past nuero even said that my son's condition changed at random, even

though I always said, " No, it only changes with changing meds. " And

always a week of no seizure activity after each med increase, only

to end up worse off a few weeks later. The neuro said, " We have to

keep increasing the drugs and eventually we will come out on the

other end, the seizures will stop and everything will be better. " I

would always ask, " Have you personally experienced this with other

patients? " HE would always say, " yes. " I wish I'd known about this

group two years ago. Might have saved us a lot of pain. That

neurologist was stuck on one thing, the medicines would eventually

work, and it was my son's brain causing all the problems. If he

could see my son right now! Siezure free, med free, on keto for 6

months and finally doing well in school once again. We have him

back. I wonder if we were seeing the same nuero. Or at the very

least they were trained by the same center or wooed by the same drug

reps. Good luck with Adrielle on keto. I'll bet you can't wait to

start.

Gretchen

>

> 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