Help! Depakote Wean begun - subclinical stuff returning??

[Guest guest]

Dear Carolyn,

We experienced similar things when we dropped s depakote. It also

took about a week before we saw it with the first couple of weans. When we

went from 500 to 375, we saw the effects within a few days and the same with

going from 375 to 250. We ended up bumping him back up to 375 and are

holding for awhile until allergy season is over and maybe the heat (he tends

to have a hard time in the summer months). We experience difficulty sleeping

at night, extreme irritablility, lack of appetite, drooling, clumsiness and

sleepy during the day. It did get better. It took about a week or week and

1/2. HANG IN THERE. also had the atypical absence seizures and

the atonic head drops. I hate those little bugger. When do you find she has

the most head nods and when did they start? Just curious.

We haven't seen any head nods in a while only the subclinical stuff here and

there.

GOODLUCK AND HANG IN THERE-

[Guest guest]

Hi, guys - I need thoughts, and reassurances. 's been on the

diet since February - we had reduced her seizures from over 100 a day

to about 20-25. Then, with some fine-tuning (bedtime snack added,

then doubled, etc.) we went down even further - 10-15 a day. She was

on 750 mg. of Depakote, and we got the ok to take it down by 125mg.

This was 11 days ago. Within 2 days, her Ketones rose, and seizures

decreased even further, to about 5 or 6 a day, and then, just 1 a

day! The last 6 days have been seizure-free - we have been holding

our breath, not knowing if the drop in Depakote actually made things

better (we suspected it might). Then, yesterday, we started to

notice signs of sub-clinical activity - dazed/confused, spacey,

drooling (drooling was a large part of her disorder before the diet

started - docs always assumed it was related to her seizures. It

disappeared when the diet began). Last night, she slept restlessly,

tossing and turning like she used to before the diet. Today, lots of

drooling and spacey behaviour. We know there have been no mistakes

made in calculating, etc. She hasn't eaten anything bad, and her

Ketones are still up - 80 in the am, 80/160 in the pm as usual.

Please tell me that this could be an effect from the wean, and that

it will probably go away??? I mean, the diet doesn't show

effectiveness at first, and then stop working, right? Has anyone

else experienced this type of withdrawl from the drug? I always

thought that the real withdrawl stuff didn't happen till you were

further down with the wean. Her overall appearance today reminds us

of how she was in the days leading up to the onset of her seizure

disorder and this has us scared to death.

Any and all thoughts appreciated - we are petrified we are going to

lost the control we have gotten! Thanks!

Carolyn, mom to , 3.10 year old with intractable seizure

disorder (atypical absence and atonic head nods), Keto kid since

2/13/02 and Cade, 10 months old and perfectly healthy so far.

[Guest guest]

Dear Carolyn:

We dropped my son's Depakote cold turkey (excuse me for that) the first day of the diet. It took 2 months before we got him back. He was gone, he was spacey and seizing constantly. A very difficult time for us..............but the best thing we ever did. It is too bad that you have to drop in such large amounts. Is their any way you can wean in smaller amounts-takes alot longer but may-be easier on .

Weaning takes courage and tons of support from this list-I'm sure you have both of those. If I were you ( THIS IS NOT ADVICE ) I would hang in there if you can.

Hugs

Diane

Help! Depakote Wean begun - subclinical stuff returning??

Hi, guys - I need thoughts, and reassurances. 's been on the diet since February - we had reduced her seizures from over 100 a day to about 20-25. Then, with some fine-tuning (bedtime snack added, then doubled, etc.) we went down even further - 10-15 a day. She was on 750 mg. of Depakote, and we got the ok to take it down by 125mg. This was 11 days ago. Within 2 days, her Ketones rose, and seizures decreased even further, to about 5 or 6 a day, and then, just 1 a day! The last 6 days have been seizure-free - we have been holding our breath, not knowing if the drop in Depakote actually made things better (we suspected it might). Then, yesterday, we started to notice signs of sub-clinical activity - dazed/confused, spacey, drooling (drooling was a large part of her disorder before the diet started - docs always assumed it was related to her seizures. It disappeared when the diet began). Last night, she slept restlessly, tossing and turning like she used to before the diet. Today, lots of drooling and spacey behaviour. We know there have been no mistakes made in calculating, etc. She hasn't eaten anything bad, and her Ketones are still up - 80 in the am, 80/160 in the pm as usual.Please tell me that this could be an effect from the wean, and that it will probably go away??? I mean, the diet doesn't show effectiveness at first, and then stop working, right? Has anyone else experienced this type of withdrawl from the drug? I always thought that the real withdrawl stuff didn't happen till you were further down with the wean. Her overall appearance today reminds us of how she was in the days leading up to the onset of her seizure disorder and this has us scared to death.Any and all thoughts appreciated - we are petrified we are going to lost the control we have gotten! Thanks!Carolyn, mom to , 3.10 year old with intractable seizure disorder (atypical absence and atonic head nods), Keto kid since 2/13/02 and Cade, 10 months old and perfectly healthy so far. "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]

Hi Carolyn

It could be that is ready for another Depakote reduction. I find

that stabilises after a reduction in her Lamictal, then when she has

an increase in seizures or insomnia (side effect of Lamictal) I know it is

time to reduce again. The diet seems to exaggerate the effects of the meds

as they are metabolised differently. Too high a level of meds can cause

seizures.

You say her ketones rose after reducing Depakote. Is this a stable

increase, or has it returned to pre-reduction levels. This may also give a

clue. needs very high ketones to abate seizures (160 at all times

on the keto stix).

Jill

At 07:38 AM 4/29/02, you wrote:

>Hi, guys - I need thoughts, and reassurances. 's been on the

>diet since February - we had reduced her seizures from over 100 a day

>to about 20-25. Then, with some fine-tuning (bedtime snack added,

>then doubled, etc.) we went down even further - 10-15 a day. She was

>on 750 mg. of Depakote, and we got the ok to take it down by 125mg.

>This was 11 days ago. Within 2 days, her Ketones rose, and seizures

>decreased even further, to about 5 or 6 a day, and then, just 1 a

>day! The last 6 days have been seizure-free - we have been holding

>our breath, not knowing if the drop in Depakote actually made things

>better (we suspected it might). Then, yesterday, we started to

>notice signs of sub-clinical activity - dazed/confused, spacey,

>drooling (drooling was a large part of her disorder before the diet

>started - docs always assumed it was related to her seizures. It

>disappeared when the diet began). Last night, she slept restlessly,

>tossing and turning like she used to before the diet. Today, lots of

>drooling and spacey behaviour. We know there have been no mistakes

>made in calculating, etc. She hasn't eaten anything bad, and her

>Ketones are still up - 80 in the am, 80/160 in the pm as usual.

>

>Please tell me that this could be an effect from the wean, and that

>it will probably go away??? I mean, the diet doesn't show

>effectiveness at first, and then stop working, right? Has anyone

>else experienced this type of withdrawl from the drug? I always

>thought that the real withdrawl stuff didn't happen till you were

>further down with the wean. Her overall appearance today reminds us

>of how she was in the days leading up to the onset of her seizure

>disorder and this has us scared to death.

>

>Any and all thoughts appreciated - we are petrified we are going to

>lost the control we have gotten! Thanks!

[Guest guest]

Glad Diane pointed this out. . . we went twice as

slowly as our neuro had initially recommended. It's

tempting to just get it over with. . . but sometimes,

more slowly is better.--D

--- Diane Wall wrote:

It is too bad that you have to drop in such

> large amounts. Is their any way you can wean in

> smaller amounts-takes alot longer but may-be easier

> on .

__________________________________________________

[Guest guest]

Carolyn,

This is happening to over and over again. I see Jill has posted about

and what happens after her lamictal reductions, we are pretty certain

the same thing is happening with and depakote (epilim).

Is on other meds besides depakote, as the reduction could be

boosting levels of any other meds at the same time, which may neccessitate a

drop in those as well.

Does she have the depakote twice or three times a day? Are there periods

where the 'spaced' behaviour improves or abates?

For example, is pretty good when he wakes, even though his ketones

are at their lowest. He has meds at about 8.00 am with breakfast, he is

'toast' by about 9.00, 9.30 am. Exactly as you describe, drooling, spacey,

dazed, (and ataxic), starts gradually improving by midday, lunch and

afternoon tea, for some reason (still trying to suss this one) exacerbates

the spaciness and drooling, but not as bad as the morning behaviour, and

then he improves again around 4.00 pm. Yesterday there was no drooling at

all from 5.00 pm till dinnertime. Good till bedtime, give him his meals and

meds, and he is 'gone' again. Worse than the morning even, as I think the

high (16+) ketones at this time of night are actually worsening things.

Now without an EEG, it is very hard to tell if he is becoming toxic again

after each reduction, or having heaps of sub clinical withdrawl seizures,

sometimes so bad I even suspect non convulsive status.

My only clue is that if it were withdrawls, he would probably be even worse

in the evening when the med levels are at their lowest, but he appears to be

at his best at this time instead, that's why my money is on toxicity.

Do you have this kind of pattern? Trouble is when trying to work it out, you

have to bear in mind that toxicity can also cause seizures, so even if an

EEG should show frequent activity, you won't know the reason why!!!!!

Hope I haven't confused you further, but it might help to get a few

different experiences. We are day 8 of 's latest reduction, he

improved day 2 and 3, then bad again until late yesterday when he started

improving again.

We were doing 100 mg reductions a week (started at 800 mgs mid Feb) when he

was definitely toxic, then switched to 50 mgs a fortnight.

A few people on the list say carnitine helps with depakote reductions, we

are patiently (not!) waiting for 's blood levels to come back before

we decide on this one though.

Know just how you're feeling, 's overall condition is worse now than

when he first started the diet, you have to wonder if you've done the right

thing, but we're pretty well committed (I think!) to pushing on to get all

meds gone, and then reintroduce them if we have to. Just hope our neuro

agrees on Thurs when we see him! Pefer to have his approval, but we'll make

our own decision ultimately anyway!

Hill in NZ, mother to 5, in NZ

Help! Depakote Wean begun - subclinical stuff

returning??

> Hi, guys - I need thoughts, and reassurances. 's been on the

> diet since February - we had reduced her seizures from over 100 a day

> to about 20-25. Then, with some fine-tuning (bedtime snack added,

> then doubled, etc.) we went down even further - 10-15 a day. She was

> on 750 mg. of Depakote, and we got the ok to take it down by 125mg.

> This was 11 days ago. Within 2 days, her Ketones rose, and seizures

> decreased even further, to about 5 or 6 a day, and then, just 1 a

> day! The last 6 days have been seizure-free - we have been holding

> our breath, not knowing if the drop in Depakote actually made things

> better (we suspected it might). Then, yesterday, we started to

> notice signs of sub-clinical activity - dazed/confused, spacey,

> drooling (drooling was a large part of her disorder before the diet

> started - docs always assumed it was related to her seizures. It

> disappeared when the diet began). Last night, she slept restlessly,

> tossing and turning like she used to before the diet. Today, lots of

> drooling and spacey behaviour. We know there have been no mistakes

> made in calculating, etc. She hasn't eaten anything bad, and her

> Ketones are still up - 80 in the am, 80/160 in the pm as usual.

>

> Please tell me that this could be an effect from the wean, and that

> it will probably go away??? I mean, the diet doesn't show

> effectiveness at first, and then stop working, right? Has anyone

> else experienced this type of withdrawl from the drug? I always

> thought that the real withdrawl stuff didn't happen till you were

> further down with the wean. Her overall appearance today reminds us

> of how she was in the days leading up to the onset of her seizure

> disorder and this has us scared to death.

>

> Any and all thoughts appreciated - we are petrified we are going to

> lost the control we have gotten! Thanks!

>

> Carolyn, mom to , 3.10 year old with intractable seizure

> disorder (atypical absence and atonic head nods), Keto kid since

> 2/13/02 and Cade, 10 months old and perfectly healthy so far.

>

>

>

>

>

> " 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]

We're at the end of the lamictal, and I can tell you for our observation that the diet increases the drug level. Jackie went toxic twice on Lamictal, and we had to do a fast wean at the end. It does change how kids obsorb their meds-we've heard that from our dr. From all I've read depakote is a nasty wean, but you've got to get through it-I'm still not sure how much of my kid is here, but there are definite glimpes of her pre diet personality. Good luck.

Mother of Jackje

age 6

Keto since 12/10/01

[Guest guest]

Is it possible that 's meals "magnify" the meds already in his system?

In the same way that the same dose of medication tolerated before the diet

can upon starting the diet make the child toxic on that medication?

I am just thinking that this sounds very similar to Mike when he went toxic

(altho he wasnt great upon waking with ketones at 4 but got even worse

after meds and meals - then got better later)- we had more problems/seizures

after meds and after meals when he was toxic - as soon as we reduced enough

this slowed and disappeared.

Not sure if this is the same thing - just remembering what happened

to Mike.

Jenn

richard & susan hill wrote:

For example, is pretty good when he wakes, even though his

ketones

are at their lowest. He has meds at about 8.00 am with breakfast,

he is

'toast' by about 9.00, 9.30 am. Exactly as you describe, drooling,

spacey,

dazed, (and ataxic), starts gradually improving by midday, lunch

and

afternoon tea, for some reason (still trying to suss this one)

exacerbates

the spaciness and drooling, but not as bad as the morning behaviour,

and

then he improves again around 4.00 pm. Yesterday there was no drooling

at

all from 5.00 pm till dinnertime. Good till bedtime, give him his

meals and

meds, and he is 'gone' again. Worse than the morning even, as I

think the

high (16+) ketones at this time of night are actually worsening

things.

[Guest guest]

Jenn,

This has been my theory since this started happening, as the problem started following increased meds after the chicken pox in Dec. My only other thought was a food intolerance of some sort, he started with increased eggs etc around the same time, while trying to get rid of processed sausages cheese etc. But elimination of what I would think are any potential 'triggers', dairy, eggs, nuts etc, has not really changed anything.

So back to that original thought, but all the Drs I have questioned on this possibility (meals 'boosting' med levels) tell me 'they doubt it'.

I am going to recommence regular blood ketone and glucose testing before and after meals, to make sure that something is not going wonky there. Random blood ketone testing a couple of weeks ago didn't seem to point in this direction, but we'll try again anyway.

The other thought is that his ratio my need bringing down, but too wary to try this at the mo,

Hill

Re: Help! Depakote Wean begun - subclinical stuff returning??

Is it possible that 's meals "magnify" the meds already in his system? In the same way that the same dose of medication tolerated before the diet can upon starting the diet make the child toxic on that medication? I am just thinking that this sounds very similar to Mike when he went toxic (altho he wasnt great upon waking with ketones at 4 but got even worse after meds and meals - then got better later)- we had more problems/seizures after meds and after meals when he was toxic - as soon as we reduced enough this slowed and disappeared. Not sure if this is the same thing - just remembering what happened to Mike. Jenn richard & susan hill wrote: For example, is pretty good when he wakes, even though his ketones are at their lowest. He has meds at about 8.00 am with breakfast, he is 'toast' by about 9.00, 9.30 am. Exactly as you describe, drooling, spacey, dazed, (and ataxic), starts gradually improving by midday, lunch and afternoon tea, for some reason (still trying to suss this one) exacerbates the spaciness and drooling, but not as bad as the morning behaviour, and then he improves again around 4.00 pm. Yesterday there was no drooling at all from 5.00 pm till dinnertime. Good till bedtime, give him his meals and meds, and he is 'gone' again. Worse than the morning even, as I think the high (16+) ketones at this time of night are actually worsening things. "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]

Well, when it comes to doctors - my son's neuro disputed that the diet

was what pushed Mike toxic the first time on the dilantin when he was given

2/3 of a dose that he previously before the diet handled well. They

dont know everything and I think even tho they dispute some of the stuff

we tell them we are seeing - they do listen (at least I know mine does

as I have read her letters to our GP)

richard & susan hill wrote:

Jenn,This

has been my theory since this started happening, as the problem started

following increased meds after the chicken pox in Dec. My only other thought

was a food intolerance of some sort, he started with increased eggs etc

around the same time, while trying to get rid of processed sausages cheese

etc. But elimination of what I would think are any potential 'triggers',

dairy, eggs, nuts etc, has not really changed anything.So

back to that original thought, but all the Drs I have questioned on this

possibility (meals 'boosting' med levels) tell me 'they doubt it'.