Re: MEDS MAKING THINGS WORSE

[Guest guest]

, Thanks for your post. I couldn't access the site you

provided, but I'll work on it. For a long time I thought the meds

made my son's seizures worse, but his neuro at the time kept

saying " no " to that idea. Everything pointed to it being the meds

(worsening of seizures as doses increased, changing of seizure type

with each new med, improvement in speech when he stopped all meds

during extended EEG..) I kept saying, " It's the meds " the doc kept

saying, " No, it is brain changes. A moving target. These are the

hardest seizures to control and outgrow. " How did I ever let that

guy convince me it was my son's brain causing the seizures and

learning delays? Oh well, we are on the right track now, thanks to

keto and a great neuro who was willing to look at things

differently. Even on keto though, I think we are rare. The

dieticians keep wanting to check ketones before we lowere the ratio,

but the neuro doesn't seem too interested in the ketone level. I

have to wonder what would happen if we slowly weaned him off keto,

now that he is med free and siezure free. But, considering all we

have been through in the last few years, I think we are all

reluctant to do that. Thanks for the info. I'm with you.

Gretchen

> My daughter is 7 and i believe the meds she is on are making

things worse.

> One diagnosis she has gotten is LGS, and it is said to get

progressively worse,

> but what if all the meds is what makes it worse?

> a had a definate experience with lamictal. As soon as she

started it,

> she started getting myoclonic jerks, i took her off after one

week, and the

> jerks stopped. She has started with the jerks again when she

started dilantin in

> November. I kept her on dilantin, because of a status scare, but

am now weaning

> her.

> There are some great studies and articles that have proven over

and over

> again about meds making seizures worse especially LGS at Pub Med.

Mostly tegretal

> and trileptal. Even dilantin.

> The site is:

> http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

db=PubMed&cmd=Retrieve&list_uids

> =9578007&dopt=Abstract

> You can click on the link for related articles and see a whole

bunch.

> My daughter is on trileptal, and has gotten alot worse since she

started, so

> im starting to wonder.

> Also i have heard seizures are a sign of the brain trying to heal

itself.

> That is why alot of kids can grow out of them, but if there are

kids that are

> really doped up, how can their brain even try?

> I wish i had the answeres i needed, and i wish there were

definates in

> diagnosing the epilepsys.

> It sucks.

>

>

>

>

[Guest guest]

, Thanks for your post. I couldn't access the site you

provided, but I'll work on it. For a long time I thought the meds

made my son's seizures worse, but his neuro at the time kept

saying " no " to that idea. Everything pointed to it being the meds

(worsening of seizures as doses increased, changing of seizure type

with each new med, improvement in speech when he stopped all meds

during extended EEG..) I kept saying, " It's the meds " the doc kept

saying, " No, it is brain changes. A moving target. These are the

hardest seizures to control and outgrow. " How did I ever let that

guy convince me it was my son's brain causing the seizures and

learning delays? Oh well, we are on the right track now, thanks to

keto and a great neuro who was willing to look at things

differently. Even on keto though, I think we are rare. The

dieticians keep wanting to check ketones before we lowere the ratio,

but the neuro doesn't seem too interested in the ketone level. I

have to wonder what would happen if we slowly weaned him off keto,

now that he is med free and siezure free. But, considering all we

have been through in the last few years, I think we are all

reluctant to do that. Thanks for the info. I'm with you.

Gretchen

> My daughter is 7 and i believe the meds she is on are making

things worse.

> One diagnosis she has gotten is LGS, and it is said to get

progressively worse,

> but what if all the meds is what makes it worse?

> a had a definate experience with lamictal. As soon as she

started it,

> she started getting myoclonic jerks, i took her off after one

week, and the

> jerks stopped. She has started with the jerks again when she

started dilantin in

> November. I kept her on dilantin, because of a status scare, but

am now weaning

> her.

> There are some great studies and articles that have proven over

and over

> again about meds making seizures worse especially LGS at Pub Med.

Mostly tegretal

> and trileptal. Even dilantin.

> The site is:

> http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

db=PubMed&cmd=Retrieve&list_uids

> =9578007&dopt=Abstract

> You can click on the link for related articles and see a whole

bunch.

> My daughter is on trileptal, and has gotten alot worse since she

started, so

> im starting to wonder.

> Also i have heard seizures are a sign of the brain trying to heal

itself.

> That is why alot of kids can grow out of them, but if there are

kids that are

> really doped up, how can their brain even try?

> I wish i had the answeres i needed, and i wish there were

definates in

> diagnosing the epilepsys.

> It sucks.

>

>

>

>

[Guest guest]

, Thanks for your post. I couldn't access the site you

provided, but I'll work on it. For a long time I thought the meds

made my son's seizures worse, but his neuro at the time kept

saying " no " to that idea. Everything pointed to it being the meds

(worsening of seizures as doses increased, changing of seizure type

with each new med, improvement in speech when he stopped all meds

during extended EEG..) I kept saying, " It's the meds " the doc kept

saying, " No, it is brain changes. A moving target. These are the

hardest seizures to control and outgrow. " How did I ever let that

guy convince me it was my son's brain causing the seizures and

learning delays? Oh well, we are on the right track now, thanks to

keto and a great neuro who was willing to look at things

differently. Even on keto though, I think we are rare. The

dieticians keep wanting to check ketones before we lowere the ratio,

but the neuro doesn't seem too interested in the ketone level. I

have to wonder what would happen if we slowly weaned him off keto,

now that he is med free and siezure free. But, considering all we

have been through in the last few years, I think we are all

reluctant to do that. Thanks for the info. I'm with you.

Gretchen

> My daughter is 7 and i believe the meds she is on are making

things worse.

> One diagnosis she has gotten is LGS, and it is said to get

progressively worse,

> but what if all the meds is what makes it worse?

> a had a definate experience with lamictal. As soon as she

started it,

> she started getting myoclonic jerks, i took her off after one

week, and the

> jerks stopped. She has started with the jerks again when she

started dilantin in

> November. I kept her on dilantin, because of a status scare, but

am now weaning

> her.

> There are some great studies and articles that have proven over

and over

> again about meds making seizures worse especially LGS at Pub Med.

Mostly tegretal

> and trileptal. Even dilantin.

> The site is:

> http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

db=PubMed&cmd=Retrieve&list_uids

> =9578007&dopt=Abstract

> You can click on the link for related articles and see a whole

bunch.

> My daughter is on trileptal, and has gotten alot worse since she

started, so

> im starting to wonder.

> Also i have heard seizures are a sign of the brain trying to heal

itself.

> That is why alot of kids can grow out of them, but if there are

kids that are

> really doped up, how can their brain even try?

> I wish i had the answeres i needed, and i wish there were

definates in

> diagnosing the epilepsys.

> It sucks.

>

>

>

>

[Guest guest]

Meds definitely made things worse for Noah- he went from having about 1 t/c a

week to having 200+ a day once he started meds... obviously we got him off those

meds and started the diet as soon as we could. It's also no secret that the diet

works best on as little or no meds as possible.

As for diagnosis, is it possible to seek a 3rd, 4th, 5th opinion? We got our

diagnosis correct on the 2nd opinion, so thankfully we haven't had to move from

that. But, how can you treat something if you don't know what it is? Recently

Dina (still on the group?) was treating Sydney for Doose while she really had

Dravet's. There can be major differences in effectiveness of treatments

according to diagnosis. I believe that the drugs made Noah's quality of life

worse than the seizures did.

Just my opinion!

Mom to Noah- age 3, med-free, & seizure-free on the keto diet

sarahbri813@... wrote:

My daughter is 7 and i believe the meds she is on are making things worse.

One diagnosis she has gotten is LGS, and it is said to get progressively worse,

but what if all the meds is what makes it worse?

a had a definate experience with lamictal. As soon as she started it,

she started getting myoclonic jerks, i took her off after one week, and the

jerks stopped. She has started with the jerks again when she started dilantin in

November. I kept her on dilantin, because of a status scare, but am now weaning

her.

There are some great studies and articles that have proven over and over

again about meds making seizures worse especially LGS at Pub Med. Mostly

tegretal

and trileptal. Even dilantin.

The site is:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Retrieve&list_uids

=9578007&dopt=Abstract

You can click on the link for related articles and see a whole bunch.

My daughter is on trileptal, and has gotten alot worse since she started, so

im starting to wonder.

Also i have heard seizures are a sign of the brain trying to heal itself.

That is why alot of kids can grow out of them, but if there are kids that are

really doped up, how can their brain even try?

I wish i had the answeres i needed, and i wish there were definates in

diagnosing the epilepsys.

It sucks.

[Guest guest]

Meds definitely made things worse for Noah- he went from having about 1 t/c a

week to having 200+ a day once he started meds... obviously we got him off those

meds and started the diet as soon as we could. It's also no secret that the diet

works best on as little or no meds as possible.

As for diagnosis, is it possible to seek a 3rd, 4th, 5th opinion? We got our

diagnosis correct on the 2nd opinion, so thankfully we haven't had to move from

that. But, how can you treat something if you don't know what it is? Recently

Dina (still on the group?) was treating Sydney for Doose while she really had

Dravet's. There can be major differences in effectiveness of treatments

according to diagnosis. I believe that the drugs made Noah's quality of life

worse than the seizures did.

Just my opinion!

Mom to Noah- age 3, med-free, & seizure-free on the keto diet

sarahbri813@... wrote:

My daughter is 7 and i believe the meds she is on are making things worse.

One diagnosis she has gotten is LGS, and it is said to get progressively worse,

but what if all the meds is what makes it worse?

a had a definate experience with lamictal. As soon as she started it,

she started getting myoclonic jerks, i took her off after one week, and the

jerks stopped. She has started with the jerks again when she started dilantin in

November. I kept her on dilantin, because of a status scare, but am now weaning

her.

There are some great studies and articles that have proven over and over

again about meds making seizures worse especially LGS at Pub Med. Mostly

tegretal

and trileptal. Even dilantin.

The site is:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Retrieve&list_uids

=9578007&dopt=Abstract

You can click on the link for related articles and see a whole bunch.

My daughter is on trileptal, and has gotten alot worse since she started, so

im starting to wonder.

Also i have heard seizures are a sign of the brain trying to heal itself.

That is why alot of kids can grow out of them, but if there are kids that are

really doped up, how can their brain even try?

I wish i had the answeres i needed, and i wish there were definates in

diagnosing the epilepsys.

It sucks.

[Guest guest]

Meds definitely made things worse for Noah- he went from having about 1 t/c a

week to having 200+ a day once he started meds... obviously we got him off those

meds and started the diet as soon as we could. It's also no secret that the diet

works best on as little or no meds as possible.

As for diagnosis, is it possible to seek a 3rd, 4th, 5th opinion? We got our

diagnosis correct on the 2nd opinion, so thankfully we haven't had to move from

that. But, how can you treat something if you don't know what it is? Recently

Dina (still on the group?) was treating Sydney for Doose while she really had

Dravet's. There can be major differences in effectiveness of treatments

according to diagnosis. I believe that the drugs made Noah's quality of life

worse than the seizures did.

Just my opinion!

Mom to Noah- age 3, med-free, & seizure-free on the keto diet

sarahbri813@... wrote:

My daughter is 7 and i believe the meds she is on are making things worse.

One diagnosis she has gotten is LGS, and it is said to get progressively worse,

but what if all the meds is what makes it worse?

a had a definate experience with lamictal. As soon as she started it,

she started getting myoclonic jerks, i took her off after one week, and the

jerks stopped. She has started with the jerks again when she started dilantin in

November. I kept her on dilantin, because of a status scare, but am now weaning

her.

There are some great studies and articles that have proven over and over

again about meds making seizures worse especially LGS at Pub Med. Mostly

tegretal

and trileptal. Even dilantin.

The site is:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Retrieve&list_uids

=9578007&dopt=Abstract

You can click on the link for related articles and see a whole bunch.

My daughter is on trileptal, and has gotten alot worse since she started, so

im starting to wonder.

Also i have heard seizures are a sign of the brain trying to heal itself.

That is why alot of kids can grow out of them, but if there are kids that are

really doped up, how can their brain even try?

I wish i had the answeres i needed, and i wish there were definates in

diagnosing the epilepsys.

It sucks.

[Guest guest]

I agree!

We have had the same experience with vigabatrin - and the doctors -

of course - didn't believe us...

I found the article, but the was an error in the original link. Try

this: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

db=PubMed&cmd=Retrieve&list_uids=9578007&dopt=Abstract

Line - mom to Flora, 7 months with IS and hopefully starting the diet

next week...

> My daughter is 7 and i believe the meds she is on are making things

worse.

> One diagnosis she has gotten is LGS, and it is said to get

progressively worse,

> but what if all the meds is what makes it worse?

> a had a definate experience with lamictal. As soon as she

started it,

> she started getting myoclonic jerks, i took her off after one week,

and the

> jerks stopped. She has started with the jerks again when she

started dilantin in

> November. I kept her on dilantin, because of a status scare, but am

now weaning

> her.

> There are some great studies and articles that have proven over and

over

> again about meds making seizures worse especially LGS at Pub Med.

Mostly tegretal

> and trileptal. Even dilantin.

> The site is:

> http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

db=PubMed&cmd=Retrieve&list_uids

> =9578007&dopt=Abstract

> You can click on the link for related articles and see a whole

bunch.

> My daughter is on trileptal, and has gotten alot worse since she

started, so

> im starting to wonder.

> Also i have heard seizures are a sign of the brain trying to heal

itself.

> That is why alot of kids can grow out of them, but if there are

kids that are

> really doped up, how can their brain even try?

> I wish i had the answeres i needed, and i wish there were definates

in

> diagnosing the epilepsys.

> It sucks.

>

>

>

>

[Guest guest]

Your information on B6 is sure worth investigating. You may wish to share its

source. Sounds almost too good to be true........ It is great that your son is

doing so well off the drugs. My daughter was seizure free for five months after

coming off the drugs. Unfortunately they returned. I hope your son's

experience is a better one. Anyway, the Lord is blessing with keto and she is

doing ever so well. One seizure last month and one so far this month, and a

ratio reduction to 2:1. ....... , 's mum

Rob Larwood rtjlarwood@...> wrote:I honestly belive that some medications

can increase

seizure activity. was on Keppra with his first

neuro and his seizures began to increase severely. I

decided to get a 2nd opinion at Children's in Boston.

When they did the levels, his Keppra level was double

the dose an adult should be on. Once we got him off

of that, we got great control. To make a long story

short, we were going to do the Keto diet this year but

our neuro finally listened to us and agreed to lower

some of 's meds. With the decrease, we've seen a

major decrease in seizures. still has one once

a week on the average.

I do have one question to post...I found some

information that a vitamin deficiency of B6 can

actually cause seizures? Does anyone know about

this? Some families have tried a regime of B6 at ever

meal with 1 teaspon of Epsom salt in fruit juice in

the morning. 4 out of 5 children's seizures stopped

and we able to come off of their meds.....I wish it

were this easy. I'm checking into the B6 now but if

anyone has any information I would greatly appreciate

it.

Even though we've put the diet on hold for now, I hope

other members don't mind me hanging around and reading

updates and posting questions every once in a

while....some of you feel like a 2nd family to us!!!

We wish everyone the best of luck!!!

Mom to -age 7

--- gretchen_kissock gretchen_kissock@...>

wrote:

>

>

> , Thanks for your post. I couldn't access the

> site you

> provided, but I'll work on it. For a long time I

> thought the meds

> made my son's seizures worse, but his neuro at the

> time kept

> saying " no " to that idea. Everything pointed to it

> being the meds

> (worsening of seizures as doses increased, changing

> of seizure type

> with each new med, improvement in speech when he

> stopped all meds

> during extended EEG..) I kept saying, " It's the

> meds " the doc kept

> saying, " No, it is brain changes. A moving target.

> These are the

> hardest seizures to control and outgrow. " How did I

> ever let that

> guy convince me it was my son's brain causing the

> seizures and

> learning delays? Oh well, we are on the right track

> now, thanks to

> keto and a great neuro who was willing to look at

> things

> differently. Even on keto though, I think we are

> rare. The

> dieticians keep wanting to check ketones before we

> lowere the ratio,

> but the neuro doesn't seem too interested in the

> ketone level. I

> have to wonder what would happen if we slowly

> weaned him off keto,

> now that he is med free and siezure free. But,

> considering all we

> have been through in the last few years, I think we

> are all

> reluctant to do that. Thanks for the info. I'm

> with you.

> Gretchen

>

> > My daughter is 7 and i believe the meds she is on

> are making

> things worse.

> > One diagnosis she has gotten is LGS, and it is

> said to get

> progressively worse,

> > but what if all the meds is what makes it worse?

> > a had a definate experience with lamictal. As

> soon as she

> started it,

> > she started getting myoclonic jerks, i took her

> off after one

> week, and the

> > jerks stopped. She has started with the jerks

> again when she

> started dilantin in

> > November. I kept her on dilantin, because of a

> status scare, but

> am now weaning

> > her.

> > There are some great studies and articles that

> have proven over

> and over

> > again about meds making seizures worse especially

> LGS at Pub Med.

> Mostly tegretal

> > and trileptal. Even dilantin.

> > The site is:

> > http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

> db=PubMed&cmd=Retrieve&list_uids

> > =9578007&dopt=Abstract

> > You can click on the link for related articles and

> see a whole

> bunch.

> > My daughter is on trileptal, and has gotten alot

> worse since she

> started, so

> > im starting to wonder.

> > Also i have heard seizures are a sign of the brain

> trying to heal

> itself.

> > That is why alot of kids can grow out of them, but

> if there are

> kids that are

> > really doped up, how can their brain even try?

> > I wish i had the answeres i needed, and i wish

> there were

> definates in

> > diagnosing the epilepsys.

> > It sucks.

> >

> >

> >

> > [Non-text portions of this message have been

> removed]

>

>

>

>

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