Re: re: final depakote reductions

[Guest guest]

thanks Barb,

it is so hard but I truly appreciate your help.

Happy New Year and I pray that this year is better than last .!

kim

[Guest guest]

How fast are you going? My neuro just told me that 1/2 capsule a month for Jake was too fast....he doesn't want to rock the boat. I'd be happy to leave it where it was if seizures are controlled.....how much is he on and why are you weaning? If you have few seizres, and side effects are not too bad, why wean now? Just playing devils advocate here...

Barb Swoyer, Jake's mom

re: final depakote reductions

I am at the tail end of my son's depakote reductions and am starting to run in to problems and I hope some of you who have gone through it can help me...on 12/16 I reduced and have had seizure activity on the 8th day,14thday , and now 16th day. I am afraid that my son cannot handle the final drops. My question is how long after have some of you seen withdrawal activity and how long did you wait to decide whether to go back up on the drug. He has not had hardly any seizure activity in a while so this is especially hard for us. Any advice would be helpful. His whole personality has improved and he has been on this drug for 3 1/2 years.thank you all in advance and Happy New Year to all. "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 professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe

[Guest guest]

Another thing to try when weaning a med is to take out a pill/dose every

other day for a month - not just drop a dose - for example - we are weaning

Mike from dilantin this is how his schedule will look:

At the start of this wean he is on 3 capsules a day - one am, one afternoon,

one pm

and two capsules a day alternating days

Month 1 - take out the middle dose (decrease one capsule every two days)

we have already done this and nothing changed for the negative - things

got better

Month 2 - take out am dose every other day ( decrease one capsule every

two days)

(this will start up again Jan 7 - wish us luck!!)

Month 3 - take out am dose all together

Month 4 - take out pm dose every other day (decrease of one capsule

every two days)

Month 5 - take out pm dose all together

It seems like a long time but if it works then I dont care how long

things take - I write everything down every day so I dont make a mistake

with the alternating days and doses etc.

We were told by the neuro to do this every two weeks but we tried a

phenobarb wean earlier (and failed and had to go back up) and it was quick

so I plan on taking lots of time with this wean. Hope this makes

sense. Anyone else have a wean schedule that might be better than

this one I would love to look at it. I want to get Mike off this

med (and phenobarb but one thing at a time) and I am always looking for

the safest and easiest way (for him) to do it.

Jenn

swoyer wrote:

It's

so hard to say. I was trying to wean our depakote as well.

Jake was on it early on for a year and a half, got up to 9 capsules a day

(at the whopping age of 1 - yikes) - and when we went on the diet we weaned

all 9 daily capsules between May and October w/ no problem, 1 capsule ever

2 weeks or so. We started dep again almost 2 years ago, I went as

high as 5, and he's currently on 3. We started phenobarb about 2

months ago and have seen quite an improvement, so I thought I could drop

the depakote - slowly. Anyway, we've dropped 1/2 in the a.m. so now

we're at 2.5 per day. Saw Dr. Duffy a few weeks ago, and he said

that since we had seen a glimpse of control, he would advise us not to

touch anything for now. I told him that I was trying to get rid of

the depakote since it didn't seem to be helping and we had added phenobarb....and

told him that I was going slowly, like 1/2 capsule a month. He told

me that he felt that was too fast....and to go slower. Hmmm. . He's

conservative, but we've known each other for 5+ years now, he knows I will

go ahead and continue dropping it, he probably wouldn't advise it....but

he'll guide me as to what he thinks is a safe way. I've held it for

now, seizures were up a little this week, so I'm going to hold for another

month or so.I would stop

where you are and wait a few weeks. If things subside, then continue

dropping very slowly. If they don't, maybe try putting a little back.

You don't want to continue to wean at the expense of seizure control....Barb

Re: re: final

depakote reductions

Hey Barb,

Grant is on lots of meds and with

good control with the diet and the addition of Dilantin in August we wanted

to at east reduce Depakote and hopefully get him off of clobazam.

He is still not very verbal and with each depakote reduction have seen

such an increase in sounds and clarity in him which we have never seen

before. A 1/2 a pill a month?. I wish I did it that way. Thiele

said continue at a 1/4 a pill a week if he wasn't having any problems.

These last few have caused trouble and wonder if I should raise depakote

again by a spec or just ride this out and hope he adjusts. Any thoughts

??

kim

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treatment option, NOT just a last resort!"

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[Guest guest]

Kim, we didnt wean dep. while on the diet (it was tried and weaned in Hannah's first year of life), but we have weaned lamictal after the diet was going for 3 months and seizures had improved. THe neuro said to take a month to wean the 200mg daily dose, dropping 50mg a week. Knowing what I did from the experts here, I took it much slower than that and did it over three months instead. Each dose drop saw more seizures, but I waited for stabilty b/n each drop before doing the next one. Withdrawal seizures started 10 days after the final drop, and occured for just over two months.

I think patience is one of the keys to successful weaning, waiting for seizures to stabilise to "normal" levels, or to be reduced, before dropping the dose, and doing smaller dose drops than suggested by doctors who often dont acknowledge that withdrawal seziures occur at all. Our neuro seemed sceptical of withdrawals but could not deny the strange "coincidence" of the return of tonic clonic seizures after more than 2 years at the end of the lamictal wean. She wanted to put the lamictal back up, assuming that the increased sz activity indicated it was essential for Hannah, but in my gut I felt that if I hung in there long enough they would prove to be withdrawals and would cease eventually. I was right.

I've heard here that dep weans can be quite awful, especially the final part of the wean. Go really slow, even though it is difficult for you. The smaller the drops and the longer in between, then hopefully the lesser the side effects. Of course, I am not speaking from the experience of weaning depakote, only lamictal, but there are similarities in many of the weans. I sincerely wish you all the best for the rest of the wean, and look forward to hearing of your dep-free little boy.

(Hannah's mum, Australia)

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

From: Kbtnr@... I am at the tail end of my son's depakote reductions and am starting to run in to problems and I hope some of you who have gone through it can help me...on 12/16 I reduced and have had seizure activity on the 8th day,14thday , and now 16th day. I am afraid that my son cannot handle the final drops. My question is how long after have some of you seen withdrawal activity and how long did you wait to decide whether to go back up on the drug.

[Guest guest]

Jenn's method of reduction is the one that we are using and we have had pretty good results so far but we have taken breaks here and there on top of it - for example we haven't weaned when we have been away from home for more than a week. Danny was on 5 capsules when we started reductions in May and we are now down to 1 at lunch and 1/2 at bedtime. The most recent reduction we did (10 days ago) we went directly from 1 at bedtime to 1/2 at bedtime. He has had more seizures than usual, so I think we should have alternated 1 and 1/2 for a month or so, but now that we are at 1/2 at night we will try to ride this out. A year ago we did a Phenobarb wean, and went very slowly with reductions every couple of months and that went fairly smoothly.

One thing to remember is that Depakote interacts with just about every other drug out there. That is one reason that we want to eliminate the Depakote. For example, our neuro told us that Depakote enhances the effects of Clobazam. When we were at the point that Danny had gone from 5 capsules of Depakote day to 3, his myoclonic seizures were way up, so we added a half a tablet of Clobazam daily and that seemed to help a lot. We would not be happy to have a large increase in Clobazam or introduction of another drug in order to get off of the Depakote, but adding a bit more Clobazam seems to be a reasonable trade-off for now. If we do have to have Danny on dual therapy I would rather that the drug in addition to Clobazam be one that does not interact with the Clobazam so that we can more easily judge which drug is doing what!

Barbara, mom to Danny, 5 1/2 years old, severe myoclonic epilepsy, and andra, 8.

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[Guest guest]

Phenobarb is the next one we want to wean - I think we will have

to go even slower with that one - he hasnt been on it long but we tried

weaning it before but it was far too fast and we ended up with a full day

of seizures (he wasnt in status cuz he was responding inbetween the seizures)

and he couldnt even get up off the floor - he just seized and slept all

day long - the next day was much better.

Jenn

Mar & Barb wrote:

Jenn's

method of reduction is the one that we are using and we have had pretty

good results so far but we have taken breaks here and there on top of it

- for example we haven't weaned when we have been away from home for more

than a week. Danny was on 5 capsules when we started reductions in

May and we are now down to 1 at lunch and 1/2 at bedtime. The most

recent reduction we did (10 days ago) we went directly from 1 at bedtime

to 1/2 at bedtime. He has had more seizures than usual, so I think

we should have alternated 1 and 1/2 for a month or so, but now that we

are at 1/2 at night we will try to ride this out. A year ago we did

a Phenobarb wean, and went very slowly with reductions every couple of

months and that went fairly smoothly. One

thing to remember is that Depakote interacts with just about every other

drug out there. That is one reason that we want to eliminate the

Depakote. For example, our neuro told us that Depakote enhances the

effects of Clobazam. When we were at the point that Danny had gone

from 5 capsules of Depakote day to 3, his myoclonic seizures were way up,

so we added a half a tablet of Clobazam daily and that seemed to help a

lot. We would not be happy to have a large increase in Clobazam or

introduction of another drug in order to get off of the Depakote, but adding

a bit more Clobazam seems to be a reasonable trade-off for now. If

we do have to have Danny on dual therapy I would rather that the drug in

addition to Clobazam be one that does not interact with the Clobazam so

that we can more easily judge which drug is doing what! Barbara,

mom to Danny, 5 1/2 years old, severe myoclonic epilepsy, and andra,

8.

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

"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 professional keto team!

Subscribe: ketogenic-subscribe

Unsubscribe: ketogenic-unsubscribe