weaning klonopin, decrease cals oh we need help

[Guest guest]

Hi there everyone, and happy thanksgiving to my fellow americans!!!

Oh I am so frustrated!!!

Here's a little background on what's been going on. About a month ago Stella

was having non convulsive status seizures with grand mals and myoclonics and

drops thrown in periodically, she was due for the VNS on the 19th of November,

but her diet/meds were not doing the trick so she was put on an emergency dose

of klonopin. For that week she was seiuzre free, then 2 days after the last

dose she started seizing again, so back on the klonopin to get her through till

the VNS. She's had the VNS and her wean off the Klonopin ends today, we did the

decrease much slower this time, and still she is seizing again. I understand

the stress from the surgery might be causing some of these seizures still, and

the wean off the klonopin but is there anything i can do with the diet to help?

Here are my thoughts/questions... She started with 1375 cals back in May since

then she's dropped to 1225cals on a 4-1 ratio. Becasue she is so inactive,

hardly any walking or running around I think her body has adjusted well to the

calorie decrease and maybe I should decrease again.

SUSAN after reading your paper from Boston, I'm interested in the weight

reduction theory that when 20% of the body's weight was reduced better seizure

control was observed. Stella has not lost or gained any weight since May. I

think her lack of excercise has wiped out the benefit from the calorie

reduction.

As far as meds go, she is currently taking 400mg of Lamictal, I weaned her off

the diamox, no change in seizures (bad or good) and now Stella is down to one

dose of 1/2 a .5g of klonopin a day, today being the last day for that too. I

understand her body is going through the withdrawl form the Klonopin and what

that does to her GABA levels, however I'm not willing to put her on the benzo

path again. She was on diazapam for over a year and that wean was terrible, but

we got past that. I've not seen any benefit to any of her meds other than they

control the status grand mals she used to have.

I'm wondering if any one has noticed any benefits to paying attention to the

glycemic index when it comes to vegetables/fruits and if that makes a

difference. Again SUSAN from your article it makes me wonder if glucose has

more to do with the control of seizures than the Betahydroxybutyrate levels

alone.

Call me crazy but I'm not giving up on this diet for Stella yet, her dietician

here in WA is helpless, I'd love to hear some feedback from others out there.

Last night after a fairly seizure free day(other than the am) she had a massive

GM while coloring, we did not give her the diastat. She went to bed, had a

dozen myoclonics, then another GM. She slept until the early am when she had

more GM's, we gave her 3 doses of 10mg of diastat and she still seized. I

realize her tolerance of benzo's is messed up now because of the klonopin, oh

what to do.

Calorie change? should I start there?

thanks

amanda

--

Stansfield

[Guest guest]

Hi ,

A couple of things you said in your post reminded me of some of

the things we went through, especially last year. You mentioned

status, nonconvulsive seizures. I'm not sure what you meant, but a

little over a year ago my son was admitted because he was having

almost continuous seizure activity. He kept functioning through it,

playing soccer, conversing, etc. But his school performance was

virtually nil, he was hard to understand, and a lot of other stuff.

We did't want to go the emergency room route, but we hadn't met our

new doc after the old one moved, and the only way anyone would see

us was through the ER.

They tried to stop the seizures with a large dose of

phenobarbitaltype drug, I think. But it made the seizures worse,

and then he threw up all night. One of the young docs there said

something like " Medicines don't work with this kid, " which is what

we had been saying all along. And the decision was made to start

keto 3 months down the road.

I believe he was on about 400mg of lamictal, maybe less (70

pounds). I also think everyone seemed to agree that not only did

the medicines not help, they made him worse. HE started improving

as we decreased lamictal. (But at the same time we added klonipin

to get him through until keto, so maybe that added some temporary

help--except that the benefits only lasted a few weeks, and then he

needed a higher dose of klonipin.)

I know you have probably considered this possiblity, but could it

be the medicines causing Stella's seizures to be so frequent? Has

there been any talk of trying to wean her more quickly, even a

hospital wean, considering the dangers of such a wean on her? My

neuro suggested that some kids wean that way, when a wean must be

made quickly.

With my son, they never could find any brain abnormalities, and

even at his worse time, a year ago, one nuero said, " on the rare

moments when he has normal EEG readings, the readings are

beautifully normal. "

I don't know if our story is similiar to yours at all, but I

threw it out just-in-case you could find something there to shed

light on your own. One thing I am very thankful for with my past

neruos is that the always insisted on monotherapy.

As for the dieticians, I wish yours were more helpful. Do you

have your own meal planner? We don't use our dieticians for menus.

I do so much fussing and changing with ingredients on hand that it

would require a lot of time on their part, and I don't think they

have that much time for just one patient. Throw vegetarian meal

plans in, and it probably becomes even harder. We recently

discovered pumpkin seeds, they are full of protien.

I really hope you start seeing some improvement in Stella. You

all have been through an awful lot.

Gretchen

>

> Hi there everyone, and happy thanksgiving to my fellow americans!!!

> Oh I am so frustrated!!!

> Here's a little background on what's been going on. About a month

ago Stella was having non convulsive status seizures with grand mals

and myoclonics and drops thrown in periodically, she was due for the

VNS on the 19th of November, but her diet/meds were not doing the

trick so she was put on an emergency dose of klonopin. For that

week she was seiuzre free, then 2 days after the last dose she

started seizing again, so back on the klonopin to get her through

till the VNS. She's had the VNS and her wean off the Klonopin ends

today, we did the decrease much slower this time, and still she is

seizing again. I understand the stress from the surgery might be

causing some of these seizures still, and the wean off the klonopin

but is there anything i can do with the diet to help?

> Here are my thoughts/questions... She started with 1375 cals back

in May since then she's dropped to 1225cals on a 4-1 ratio. Becasue

she is so inactive, hardly any walking or running around I think her

body has adjusted well to the calorie decrease and maybe I should

decrease again.

> SUSAN after reading your paper from Boston, I'm interested in the

weight reduction theory that when 20% of the body's weight was

reduced better seizure control was observed. Stella has not lost or

gained any weight since May. I think her lack of excercise has

wiped out the benefit from the calorie reduction.

> As far as meds go, she is currently taking 400mg of Lamictal, I

weaned her off the diamox, no change in seizures (bad or good) and

now Stella is down to one dose of 1/2 a .5g of klonopin a day, today

being the last day for that too. I understand her body is going

through the withdrawl form the Klonopin and what that does to her

GABA levels, however I'm not willing to put her on the benzo path

again. She was on diazapam for over a year and that wean was

terrible, but we got past that. I've not seen any benefit to any of

her meds other than they control the status grand mals she used to

have.

> I'm wondering if any one has noticed any benefits to paying

attention to the glycemic index when it comes to vegetables/fruits

and if that makes a difference. Again SUSAN from your article it

makes me wonder if glucose has more to do with the control of

seizures than the Betahydroxybutyrate levels alone.

> Call me crazy but I'm not giving up on this diet for Stella yet,

her dietician here in WA is helpless, I'd love to hear some feedback

from others out there.

> Last night after a fairly seizure free day(other than the am) she

had a massive GM while coloring, we did not give her the diastat.

She went to bed, had a dozen myoclonics, then another GM. She slept

until the early am when she had more GM's, we gave her 3 doses of

10mg of diastat and she still seized. I realize her tolerance of

benzo's is messed up now because of the klonopin, oh what to do.

> Calorie change? should I start there?

> thanks

> amanda

> --

> Stansfield

>

>

>

>

>

>

>

[Guest guest]

, my keto team has put some kids on a low glycemic index diet with

interesting and encouraging results. Yes, I think it is a factor. Might be

worth a try to examine that piece. Sorry can't be of more help to poor

Stella. Hope things level off soon.

Barb Swoyer, Jake's mom

weaning klonopin, decrease cals oh we need help

> I'm wondering if any one has noticed any benefits to paying attention to

the glycemic index when it comes to vegetables/fruits and if that makes a

difference. Again SUSAN from your article it makes me wonder if glucose has

more to do with the control of seizures than the Betahydroxybutyrate levels

alone.

--

> Stansfield

[Guest guest]

I think it has more to do with increasing volume of food to increase

meal volumes for enjoyment, better digestion and bowel function and

possibly more vitamins, minerals.

Bill

Barbara Swoyer wrote:

> , my keto team has put some kids on a low glycemic index diet with

> interesting and encouraging results. Yes, I think it is a factor. Might be

> worth a try to examine that piece. Sorry can't be of more help to poor

> Stella. Hope things level off soon.

> Barb Swoyer, Jake's mom

> weaning klonopin, decrease cals oh we need help

>

>

>

>

>>I'm wondering if any one has noticed any benefits to paying attention to

>

> the glycemic index when it comes to vegetables/fruits and if that makes a

> difference. Again SUSAN from your article it makes me wonder if glucose has

> more to do with the control of seizures than the Betahydroxybutyrate levels

> alone.

> --

>

>> Stansfield

>

>

>

>

>

[Guest guest]

When you say Stella's weight has stayed stable , what has happened

height wise? Has she grown upwards whilst staying at the same weight? If so,

this would already be a form of weight loss...if not, then with no height growth

at all in 6 mths, it may in fact be the opp prob - too few cals?

is actually one where the attempt to reduce his body weight backfired

on us bigtime, (twice) though I do know of cases where it has been what was

needed for control, so personally.... I'm a bit on the fence on that one.

Is she actually 'overweight' according to her growth charts?

isn't/wasn't overweight in weight/height ratio, but he wasn't on the leaner side

either, and trying to make him so, in his case, was the wrong move - he went

catabolic as a result, so I always get a bit nervous about the deliberate

attempt at weight loss thing - if the growth height/weight ratio is not out of

kilter weight wise already that is.

You're right though, if she has been less active, any calorie reduction would

have been sort of cancelled out, and if she is one who who did need some weight

loss for better control, then a calorie reduction might well be what she needs.

Glucose checks before meals are due, and then again as each meal 'peaks',

approx 60-90 mins afterwards, as well as one just before she wakes in the morn

would prob be a good indicator, along with plotting her height etc over the last

6 mths to see what has happened there.

400 mg lamictal sounds like a huge med dose, how much does she actually weigh?

Half that, 200 mgs per day for was enough to make him v toxic (with

resultant toxicity induced seizures - which actually accelerated into status)

soon after starting the diet when he weighed about 23-25 kilos, is she much

above that weight wise? Mind you, he had depakote on baord as well, which

potentiates lamictal, so a sl diff scenario - but 400 still sounds mighty high

though, esp when in ketosis...

Knowing the benzos and how hard they are to wean, I would still also possibly

suspect some fallout there right now, either a prolonged diaz wean reaction

still, or more recently from the klonipin - I used to feel like these meds were

stuck fast to , and refused to let go!

The fact that 30 mgs diastat didn't halt the seizure activity either says that

she is either 'way' tolerant of this class of meds now, perhaps even as

was - 'in' tolerant, or that she is perhaps toxic on the lamictal - meaning that

extra diaz doses etc would not help - sometimes make her worse. This happened

with when toxic on lamictal - the diaz didn't touch him, but 5 days after

a (biggish) lamictal reduction, another attempt at using it to break the cycle,

worked.

I am picking though like me with , when she is a bad way, the last thing

you want to attempt right now is a med reduction?

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

From: astansfield@...

Hi there everyone, and happy thanksgiving to my fellow americans!!!

Oh I am so frustrated!!!

Here's a little background on what's been going on. About a month ago

Stella was having non convulsive status seizures with grand mals and myoclonics

and drops thrown in periodically, she was due for the VNS on the 19th of

November, but her diet/meds were not doing the trick so she was put on an

emergency dose of klonopin. For that week she was seiuzre free, then 2 days

after the last dose she started seizing again, so back on the klonopin to get

her through till the VNS. She's had the VNS and her wean off the Klonopin ends

today, we did the decrease much slower this time, and still she is seizing

again. I understand the stress from the surgery might be causing some of these

seizures still, and the wean off the klonopin but is there anything i can do

with the diet to help?

Here are my thoughts/questions... She started with 1375 cals back in May

since then she's dropped to 1225cals on a 4-1 ratio. Becasue she is so

inactive, hardly any walking or running around I think her body has adjusted

well to the calorie decrease and maybe I should decrease again.

SUSAN after reading your paper from Boston, I'm interested in the weight

reduction theory that when 20% of the body's weight was reduced better seizure

control was observed. Stella has not lost or gained any weight since May. I

think her lack of excercise has wiped out the benefit from the calorie

reduction.

As far as meds go, she is currently taking 400mg of Lamictal, I weaned her

off the diamox, no change in seizures (bad or good) and now Stella is down to

one dose of 1/2 a .5g of klonopin a day, today being the last day for that too.

I understand her body is going through the withdrawl form the Klonopin and what

that does to her GABA levels, however I'm not willing to put her on the benzo

path again. She was on diazapam for over a year and that wean was terrible, but

we got past that. I've not seen any benefit to any of her meds other than they

control the status grand mals she used to have.

I'm wondering if any one has noticed any benefits to paying attention to the

glycemic index when it comes to vegetables/fruits and if that makes a

difference. Again SUSAN from your article it makes me wonder if glucose has

more to do with the control of seizures than the Betahydroxybutyrate levels

alone.

Call me crazy but I'm not giving up on this diet for Stella yet, her

dietician here in WA is helpless, I'd love to hear some feedback from others out

there.

Last night after a fairly seizure free day(other than the am) she had a

massive GM while coloring, we did not give her the diastat. She went to bed,

had a dozen myoclonics, then another GM. She slept until the early am when she

had more GM's, we gave her 3 doses of 10mg of diastat and she still seized. I

realize her tolerance of benzo's is messed up now because of the klonopin, oh

what to do.

Calorie change? should I start there?

thanks

amanda

--

Stansfield

[Guest guest]

Well, my team has used it as an alternative to keto diet, and it has helped

some of the kids w/ seizures. They are presenting this finding at an

upcoming seminar/conference, they just told me when I was there last week.

Worth trying maybe.

weaning klonopin, decrease cals oh we need help

> >

> >

> >

> >

> >>I'm wondering if any one has noticed any benefits to paying attention to

> >

> > the glycemic index when it comes to vegetables/fruits and if that makes

a

> > difference. Again SUSAN from your article it makes me wonder if glucose

has

> > more to do with the control of seizures than the Betahydroxybutyrate

levels

> > alone.

> > --

> >

> >> Stansfield

> >

> >

> >

> >

" 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]

I should add, they orinigally used it for a child who could not tolerate the

keto diet, for whatever reason.

weaning klonopin, decrease cals oh we need help

> > >

> > >

> > >

> > >

> > >>I'm wondering if any one has noticed any benefits to paying attention

to

> > >

> > > the glycemic index when it comes to vegetables/fruits and if that

makes

> a

> > > difference. Again SUSAN from your article it makes me wonder if

glucose

> has

> > > more to do with the control of seizures than the Betahydroxybutyrate

> levels

> > > alone.

> > > --

> > >

> > >> Stansfield

> > >

> > >

> > >

> > >

> > >