Re: SleepSeizures/SZ worse/Bill

[Guest guest]

when did you reduce the depakote? SOmetimes fall out happens a bit after.

Have weaned depakote once already, and it was smooth. When we weaned

zonegram, all ))_) broke loose for about 3 weeks due to fears of toxicity.

Which is how we ended up on depakote again.

We too are on depakote and kepra, and doing a kepra wean. Jackie is on 3.75

pills of kepra (one in the am, 2.75 in the pm). We are reducing 1/8 of a

pill at a time. We have found out that she has withdrawl seizures for

anywhere from 24 hours to a week, running the gamut of grand mals to clonics

depending on where we are in the wean. At the begining of the wean she has

grand mals, then they lesson in severity as the week goes on.

A cousin of mine who is a physician has observed that when you reduce or

increase a med, the body has to find its own " equlibrium " and that can cause

either an increase in seizures or the affects of the meds as the body tries

to reset itself with the change in meds. All I can say is to hang in there,

let his body reset itself, unfortunatley we've all been there, and it takes

time.

Kepra has a 6 hour half life, and does stay in the body a bit after a

reduction. I think it is stored in the body fat, so if he is toxic on it,

you will just have to wait it out. Good luck.

mother of Jackie

age 7

kepra and depakote

[Guest guest]

Bill,

Dylan is on 1 depakote sprinkle AM and 1 depakote PM (this was

drastically reduced many moons ago..) He also is on Keppra 250 2 in

the AM / 1 afternoon / 1 in the PM total of 4 keppras. No meds have

been reduced or taken away thus far. Toxic levels could be possible,

if so I have only made the problem worse-by adding an extra keppra at

night once, and then giving ativan on top of his regular meds. Only

because it was the only thing I could think of doing to stop or

reduce the seizure activity he was having.

I am in a fog, from stress, worry, lack of sleep, and just plain

falling down tired. I would give anything right now for him to get

just one Good nights sleep. I know you understand.

Luv & Dylan

************************God Bless*************************************

Prayer can work miracles, keep praying. Thank you

In ketogenic , Bill Barber <TheBarbers@l...> wrote:

> ,

>

> Sorry, I don't remember your son's history. If he is on meds and

there

> have been changes, that could account for increased seizures. I know

> what is like to lie beside a child and feel and hear the seizures

> through the night. It ain't pretty and leaves you exhausted and

foggy-brained.

>

> Praying for you,

> Bill

>

> " girardigina " wrote:

> For

> > the seizures worsened after the diet was started.

> > Will listen to any advice you have to give.

> > With love, and Dylan

[Guest guest]

This is outside my experience. We had a terrible time with tegretol

withdrawals, resulting in the continuous night-time seizures which then

began happening during the day as well.

I have only heard here that depakote can be awful to be on and then to

get rid of. Maybe others with more experience with this drug can help. I

don't know anything about keppra either. The ativan is something that we

had to use as well under similar situation and it didn't do much. Don't

get down on yourself for trying something different to try and get

things better and then they get worse. That's par for the course with

seizures and our children. You just have to keep on trying.

Bill

" girardigina " wrote:

>

> Bill,

> Dylan is on 1 depakote sprinkle AM and 1 depakote PM (this was

> drastically reduced many moons ago..) He also is on Keppra 250 2 in

> the AM / 1 afternoon / 1 in the PM total of 4 keppras. No meds have

> been reduced or taken away thus far. Toxic levels could be possible,

> if so I have only made the problem worse-by adding an extra keppra at

> night once, and then giving ativan on top of his regular meds. Only

> because it was the only thing I could think of doing to stop or

> reduce the seizure activity he was having.

[Guest guest]

My guess is that med levels need to be reduced. always has

increased sz (on the diet) when meds need to be reduced. As we have reduced

the meds, we have seen increased sz control. It would be worth discussing

this with your neuro.

Jill

At 04:24 AM 1/2/03, you wrote:

>Bill,

>Dylan is on 1 depakote sprinkle AM and 1 depakote PM (this was

>drastically reduced many moons ago..) He also is on Keppra 250 2 in

>the AM / 1 afternoon / 1 in the PM total of 4 keppras. No meds have

>been reduced or taken away thus far. Toxic levels could be possible,

>if so I have only made the problem worse-by adding an extra keppra at

>night once, and then giving ativan on top of his regular meds. Only

>because it was the only thing I could think of doing to stop or

>reduce the seizure activity he was having.

>I am in a fog, from stress, worry, lack of sleep, and just plain

>falling down tired. I would give anything right now for him to get

>just one Good nights sleep. I know you understand.

>Luv & Dylan

[Guest guest]

You know that could be a real possibility. He is on a very low dose

of Depakote, but I have always heard it is really Not compatable

w/the diet. He also is on keppra. Thank you, I will ask the drs about

lowering the depakote level. I know that it has to be taken away very

slowly, what is it about 1/8 of a capsule a day?

***********************God bless*************************************

> >Bill,

> >Dylan is on 1 depakote sprinkle AM and 1 depakote PM (this was

> >drastically reduced many moons ago..) He also is on Keppra 250 2 in

> >the AM / 1 afternoon / 1 in the PM total of 4 keppras. No meds have

> >been reduced or taken away thus far. Toxic levels could be

possible,

> >if so I have only made the problem worse-by adding an extra keppra

at

> >night once, and then giving ativan on top of his regular meds. Only

> >because it was the only thing I could think of doing to stop or

> >reduce the seizure activity he was having.

> >I am in a fog, from stress, worry, lack of sleep, and just plain

> >falling down tired. I would give anything right now for him to get

> >just one Good nights sleep. I know you understand.

> >Luv & Dylan