Re: seizures are back-Kathleen

[Guest guest]

> We've been

> weaning his valproic acid and are down to one dose of 125mg a day.

> He has had a seizure or two a few days after every decrease so when

> he had one on day five of this last decrease I wasn't overly

> concerned. However on day six he had a day and evening of seizures

> (had to give Ativan to allow him to rest), and I wondered about the

> heat and humidity. The next day he appeared to be back in the

> syndrome -- unable to be alone, clingy, wailing, perseverative,

> unable to walk, slumped over, drawn, dissapeared inside himself.

> Now a few days later he's not any better and I'm thinking he must

> not be ready to come off the valproic acid. He was perfect on 125mg

> 2Xday. I'm supposed to drop the last dose tommorrow, leaving him

> medication free, but I don't think I can.

Kathleen,

Just a quick 2 cents worth--I don't consider us out of the woods yet on

a recent depakote wean, as yet-last dose was 5 weeks ago (Claire was on

it for 14 months; highest dose was 900mg/day). But I can tell you that

through the last few reductions (I went very slowly at the end-roughly

30mg/day every 10 days), Claire had increased seizures overall and awake

seizures (which had been pretty well controlled on the diet after

reducing the depakote)--she was having little jerks, absences (hadn't

had those for months) and was drooling again.

Most neuros think a faster wean is ok (and sometimes necessary), but the

one time I followed the schedule of 125mg/week, Claire went into status

and back on an even higher dose. You may want to consider going back to

where Isaac had control and let him stabilize, then wean the last bit

ever so slowly.

You're right, though, that he may need something in addition to the

diet--my daughter may as well --verdict still out on that, but for

her it definitely isn't depakote.

~Barbara

>

[Guest guest]

> We've been

> weaning his valproic acid and are down to one dose of 125mg a day.

> He has had a seizure or two a few days after every decrease so when

> he had one on day five of this last decrease I wasn't overly

> concerned. However on day six he had a day and evening of seizures

> (had to give Ativan to allow him to rest), and I wondered about the

> heat and humidity. The next day he appeared to be back in the

> syndrome -- unable to be alone, clingy, wailing, perseverative,

> unable to walk, slumped over, drawn, dissapeared inside himself.

> Now a few days later he's not any better and I'm thinking he must

> not be ready to come off the valproic acid. He was perfect on 125mg

> 2Xday. I'm supposed to drop the last dose tommorrow, leaving him

> medication free, but I don't think I can.

Kathleen,

Just a quick 2 cents worth--I don't consider us out of the woods yet on

a recent depakote wean, as yet-last dose was 5 weeks ago (Claire was on

it for 14 months; highest dose was 900mg/day). But I can tell you that

through the last few reductions (I went very slowly at the end-roughly

30mg/day every 10 days), Claire had increased seizures overall and awake

seizures (which had been pretty well controlled on the diet after

reducing the depakote)--she was having little jerks, absences (hadn't

had those for months) and was drooling again.

Most neuros think a faster wean is ok (and sometimes necessary), but the

one time I followed the schedule of 125mg/week, Claire went into status

and back on an even higher dose. You may want to consider going back to

where Isaac had control and let him stabilize, then wean the last bit

ever so slowly.

You're right, though, that he may need something in addition to the

diet--my daughter may as well --verdict still out on that, but for

her it definitely isn't depakote.

~Barbara

>

[Guest guest]

> We've been

> weaning his valproic acid and are down to one dose of 125mg a day.

> He has had a seizure or two a few days after every decrease so when

> he had one on day five of this last decrease I wasn't overly

> concerned. However on day six he had a day and evening of seizures

> (had to give Ativan to allow him to rest), and I wondered about the

> heat and humidity. The next day he appeared to be back in the

> syndrome -- unable to be alone, clingy, wailing, perseverative,

> unable to walk, slumped over, drawn, dissapeared inside himself.

> Now a few days later he's not any better and I'm thinking he must

> not be ready to come off the valproic acid. He was perfect on 125mg

> 2Xday. I'm supposed to drop the last dose tommorrow, leaving him

> medication free, but I don't think I can.

Kathleen,

Just a quick 2 cents worth--I don't consider us out of the woods yet on

a recent depakote wean, as yet-last dose was 5 weeks ago (Claire was on

it for 14 months; highest dose was 900mg/day). But I can tell you that

through the last few reductions (I went very slowly at the end-roughly

30mg/day every 10 days), Claire had increased seizures overall and awake

seizures (which had been pretty well controlled on the diet after

reducing the depakote)--she was having little jerks, absences (hadn't

had those for months) and was drooling again.

Most neuros think a faster wean is ok (and sometimes necessary), but the

one time I followed the schedule of 125mg/week, Claire went into status

and back on an even higher dose. You may want to consider going back to

where Isaac had control and let him stabilize, then wean the last bit

ever so slowly.

You're right, though, that he may need something in addition to the

diet--my daughter may as well --verdict still out on that, but for

her it definitely isn't depakote.

~Barbara

>

[Guest guest]

Excellent advice, thank-you. It's what my gut tells me to do so I

think, barring advice to the contrary from the doc (which I'm sure I

won't get) that's what we'll do.

Kathleen

> > We've been

> > weaning his valproic acid and are down to one dose of 125mg a

day.

> > He has had a seizure or two a few days after every decrease so

when

> > he had one on day five of this last decrease I wasn't overly

> > concerned. However on day six he had a day and evening of

seizures

> > (had to give Ativan to allow him to rest), and I wondered about

the

> > heat and humidity. The next day he appeared to be back in the

> > syndrome -- unable to be alone, clingy, wailing, perseverative,

> > unable to walk, slumped over, drawn, dissapeared inside himself.

> > Now a few days later he's not any better and I'm thinking he must

> > not be ready to come off the valproic acid. He was perfect on

125mg

> > 2Xday. I'm supposed to drop the last dose tommorrow, leaving him

> > medication free, but I don't think I can.

>

>

> Kathleen,

> Just a quick 2 cents worth--I don't consider us out of the woods

yet on

> a recent depakote wean, as yet-last dose was 5 weeks ago (Claire

was on

> it for 14 months; highest dose was 900mg/day). But I can tell you

that

> through the last few reductions (I went very slowly at the end-

roughly

> 30mg/day every 10 days), Claire had increased seizures overall and

awake

> seizures (which had been pretty well controlled on the diet after

> reducing the depakote)--she was having little jerks, absences

(hadn't

> had those for months) and was drooling again.

>

> Most neuros think a faster wean is ok (and sometimes necessary),

but the

> one time I followed the schedule of 125mg/week, Claire went into

status

> and back on an even higher dose. You may want to consider going

back to

> where Isaac had control and let him stabilize, then wean the last

bit

> ever so slowly.

>

> You're right, though, that he may need something in addition to

the

> diet--my daughter may as well --verdict still out on that,

but for

> her it definitely isn't depakote.

> ~Barbara

>

>

>

> >

>

>

>

[Guest guest]

Excellent advice, thank-you. It's what my gut tells me to do so I

think, barring advice to the contrary from the doc (which I'm sure I

won't get) that's what we'll do.

Kathleen

> > We've been

> > weaning his valproic acid and are down to one dose of 125mg a

day.

> > He has had a seizure or two a few days after every decrease so

when

> > he had one on day five of this last decrease I wasn't overly

> > concerned. However on day six he had a day and evening of

seizures

> > (had to give Ativan to allow him to rest), and I wondered about

the

> > heat and humidity. The next day he appeared to be back in the

> > syndrome -- unable to be alone, clingy, wailing, perseverative,

> > unable to walk, slumped over, drawn, dissapeared inside himself.

> > Now a few days later he's not any better and I'm thinking he must

> > not be ready to come off the valproic acid. He was perfect on

125mg

> > 2Xday. I'm supposed to drop the last dose tommorrow, leaving him

> > medication free, but I don't think I can.

>

>

> Kathleen,

> Just a quick 2 cents worth--I don't consider us out of the woods

yet on

> a recent depakote wean, as yet-last dose was 5 weeks ago (Claire

was on

> it for 14 months; highest dose was 900mg/day). But I can tell you

that

> through the last few reductions (I went very slowly at the end-

roughly

> 30mg/day every 10 days), Claire had increased seizures overall and

awake

> seizures (which had been pretty well controlled on the diet after

> reducing the depakote)--she was having little jerks, absences

(hadn't

> had those for months) and was drooling again.

>

> Most neuros think a faster wean is ok (and sometimes necessary),

but the

> one time I followed the schedule of 125mg/week, Claire went into

status

> and back on an even higher dose. You may want to consider going

back to

> where Isaac had control and let him stabilize, then wean the last

bit

> ever so slowly.

>

> You're right, though, that he may need something in addition to

the

> diet--my daughter may as well --verdict still out on that,

but for

> her it definitely isn't depakote.

> ~Barbara

>

>

>

> >

>

>

>

[Guest guest]

We too are weaning depakote and going very, very slowly because last summer we

weaned her clobazam and Rebekah has major withdrawl symptoms and earlier had

gone into status with a decrease. Even with going slowly, the closer we get to

being finished the more fall out we seem to have. We are working on the second

last capsule now. She had two major seizures on Friday night......slept well

the following night and last night was awake almost every hour with what seemed

night terrors.....it seems every wean is different but I know with the clobazam

it takes weeks/months to get rid of entirely in the body. It takes awhile for

the depakote level to drop so it is understandable that we will see withdrawl

symptoms for some time after a decrease. Hang in there....it is worth iton the

otherside even though it is extremely hard to see our kids go through it.

LaVerna, mom to Rebekah(10) on diet for just over three years

seizures are back

Looking for advice. Isaac has only been on kd for one month but has

done so well it was breathtaking! We have our boy back! We've been

weaning his valproic acid and are down to one dose of 125mg a day.

He has had a seizure or two a few days after every decrease so when

he had one on day five of this last decrease I wasn't overly

concerned. However on day six he had a day and evening of seizures

(had to give Ativan to allow him to rest), and I wondered about the

heat and humidity. The next day he appeared to be back in the

syndrome -- unable to be alone, clingy, wailing, perseverative,

unable to walk, slumped over, drawn, dissapeared inside himself.

Now a few days later he's not any better and I'm thinking he must

not be ready to come off the valproic acid. He was perfect on 125mg

2Xday. I'm supposed to drop the last dose tommorrow, leaving him

medication free, but I don't think I can. I'm going to call the doc

and ask about reinstating the last decrease instead at least keeping

things the same. I don't want to do anything rash though. If he'd

just had a few simple seizures I would persist with the plan, it's

the return of the symdromy symptoms that has me very worried.

ly I'm really worried that the diet isn't going to work again.

Does the diet ever work like the start of a new med. We almost

always got a good effect on the initiation of a new drug and then

the seizures would break through and the increasing to toxic levels

would begin. I'm not sure I can bear losing him again. Anyone have

any words of wisdom?

Thanks

Kathleen

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