Re: Confusion about weaning

[Guest guest]

txmomwithkids wrote:

> 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.

You might be talking about my comment - even a person without seizures,

if you put them on a seizure med and then stop it cold turkey, can have

seizures. Thats why these drugs are usually weaned as opposed to stopped

suddenly.

I read your post again but aren't sure which seizures you think might

have been from weaning? Was it seizures after the MMR shot, if so could

have been from the shot itself or from lowering the depakote, if I am

following you correctly.

If you could wean him without too much fallout pre-diet it would likely

make all your lives easier. But its good to have something around as a

safety net in that case, like diazapam or something you can use if the

seizures get really bad

[Guest guest]

>

> 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????

There is nothing about the diet that I'd consider needless. Please

read a thread that I started in the " Parents Helping Parents " group

of the efa.org Thread: " 10 Reasons to stick with the ketogenic diet " .

BTW: Depakote is boarder line containdicated for the diet. Also,

reduction should be done on a percentage basis (eg: 6%), beware of

those that say you can reduce Xmg per week until the end.

[Guest guest]

,

Some dr.s say there are no rebound/ withdrawal sz. but as most parents

on this list know there are! We've been through them. I have a booklet

printed here (UK) about epilepsy that says even drugs that don't help have

to be weaned off carefully to prevent withdrawal sz. I also know of someone

who was wrongly diagnosed with epilepsy and given AEDs. She had sz for

years and finally when they discovered what was wrong and weaned

the AEDs , she stopped having sz. So this is a case where AEds caused sz

in a non-epileptic person.

On another point it maybe easier if you started the diet (if you needed to )

while was off drugs. If there's any chance you could wean as before

- going slower towards the end - that's what I'd do. It would be more

difficult

to wean drugs while on the diet as it has and effect on the way the

drugs work

especially Depakote.

Saro......Rohan's mum

txmomwithkids wrote:

>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.

>

>

>

>

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>

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[Guest guest]

,

Yes, you can have withdrawl seizures from weaning. I too wish we had known

this. Prior to starting the diet we had tried to wean tegretol and had

seizure activity after half of it was weaned. We instantly upped the

medication to where it had been. ly, I think many neurologists do not

know that antileptic drugs are addictive and can cause seizures when weaned.

I wish we had known. Also, the weaning process is often too fast. When you

get down to the last half of the wean you are actually weaning a higher

percentage of the drug than the first half. It may be more effective to

take away 10-25 percent of the medication every 2 weeks (sometimes longer

depending on if there were seizures after the drop in medication) to have

the best results and to keep away as much as possible from the withdrawl

seizures. Withdrawl seizures can stay around for a week or two (sometimes

longer) and its best to stabilize before the next drop in medication. The

longer a child has been on a medication the longer it may take to wean.

Some medications have been known to be stored in the fat and withdrawl

seizures have happened a month after completely weaning.

The diet works best when there are no meds on board. We cannot know how

well the diet will work for a child until the meds are gone. Medications

can inhibit the full positive effect of the diet. The most ideal situation

is to start the diet med free. This does not happen very often. Often

after starting the diet a child will go toxic on the medication due to not

needing as much medication resulting in needing to reduce the medication

immediately. Unfortuantely there are some neuro’s out there who do not

understand this and instead add medication or increase it to treat an

increase in seizures from toxicity.

It would seem to be worth trying to wean the keppra before starting the

diet. First, you would know for sure if was seizure free without the

keppra, but go very slowly. You might want to do 10 percent at a time every

2 weeks. You could even go a month. If has a seizure then watch for

several days (even a week or two if not severe) to see if they get worse or

improve. If they get worse you can always give back the amount you took

away and go even slower. If he goes med free and seizure free then

wonderful! If the seizures persist after being med free then you can start

the diet. As you consider the diet you may want to consider trying on

the Atkins diet. That is less stressful and has been known to stop seizures

or improve them. Hopkins is doing studies on it and having some good

results.

Hope this helps.

Rhonda (mom to Shan, age 8, keto kid for 23 months)

* 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.

..