Re: Confusion about weaning

[Guest guest]

I have talked with my husband Tim and he thinks that we may go ahead

and wean a little more. Now, everyone says slow, what exactly

does that mean? We take 62mg of Depakote 3x a day. When we weaned

before we were down to 62mg twice a day and no seizures for over a

month, until we had that MMR shot. Our neuro just had us remove one

dose and then another. That may be too fast. Here's what's

interesting, when you said that someone was dx with E and then it

proved to be a misdiagnosis, that struck a cord with me. When our

doctor 1st came to talk to us after the EEG, he said did NOT

have any seizures. He was having hundreds of jerks a day. He said

according to the EEG that they were only myoclonus. Then several

hours later before we left the hospital (we were there for an VEEG)

he said there were a few that were Myoclonic seizures. So we

started drugs and had no seizures for 1 year. We went to wean and

had a few over several weeks, then stopped for over a month. So now

I'm really wondering, hum.

>

> >I've been researching the diet for sometime now and we are

planned

> >to start next month in Dallas.

> >

> >In a nutshell, our son (21mo) has been very controlled on

> >Depakote for over 1 year. It was the first major drug we tried

and

> >it worked like a charm. However, he has had development issues.

He

> >is 1 year behind in speech and motor. We have done MRI's, EEG's

and

> >all to check for underlying causes. They have been completely

> >normal. In fact our last 48 hour EEG was 2 weeks ago and the

pedi

> >neuro described it as " completely unremarkable " and " absolutely

> >normal for age " . So we don't have a slow, brain speed or unknown

> >seizure activity going on that would slow development, according

to

> >the tests we have done. So the doctor believes that some if not

> >most of his development issues may be coming from the Depakote.

> >

> >After a year of being seizure free, we weaned about to about

> >half of his dose of Depakote a few months ago. He gained 3

months

> >of development in 1 mo! He had a few seizures about one every 2

> >weeks for a short time and then none for about a month, until he

had

> >an MMR shot. So then we did a knee jerk reaction and upped the

dose

> >and talked with the neuro and he recommeded we try another drug.

So

> >we tried Topamax. We took about a month to figure out that while

he

> >didn't have any seizures, he was getting worst motor wise, and

then

> >he lost all his words. So back to the Depakote we went. We are

> >only on 17mg/kg/day. It is a very small dose. For those who

don't

> >know normal dose is 15-40mg/kg/day and sometimes higher. He

> >continues to be seizure free since the change back.

> >

> >Now we are in line for the diet with the purpose of stopping the

> >drugs. I have noticed that there is much talk about " Rebound

> >seizures " when decreasing meds. I've been asking myself if maybe

> >the seizures we saw were the result of rebound? Or maybe I'm

> >mistaken and that " rebound " only happens with the diet?

> >

> >Someone once said that if you took a normal person with no

seizures

> >and you put them on seizure meds for a long period of time and

then

> >weaned them off, they would probably have a seizure b/c of

> >the " rebound " effect. Now, I have never read this in a book, but

> >there are many things that I've learned about these seizures and

not

> >out of a book.

> >

> >So, I'm wondering should we pursue weaning him off and see what

> >happens before we do the diet. I would just hate to put him

through

> >the rigors of the diet needlessly. AM I MAKING ANY SENSE????

> >

> >If you can help us I sure would appreciate it. I am fearful of

> >weaning again, but I am concerned that we might be making a

mistake.

> >

> >

> >

> >

> > " The Ketogenic Diet....a realistic treatment option, NOT just a

last resort! "

> >

> > List is for parent to parent support only.

> > It is important to get medical advice from a

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