Hello!a new member from France!!!

Posted June 22, 2004 · June 22, 2004

Hello,

I hope I'll find some good advices on this list....My son 6 years old has an

unknown disease, he can't walk, sit down, talk, hold his head properly,

communicate.......and he 's got a cryptogenic epilepsy with a lot of fits every

day especially during the night....

Doctors tried every chimical drug but no amelioration so he's on ketogenic

diet since yesterday, we are in hospital...

I'll write you later

Could you telle me what you think about Topiramate and this diet?

Thanks

Carolyn

Re: Hi ! I am a new member

Thanks Ally

We have already started valproate and ph has been taking topamax

for quite a few months.So I guess we have to watch him carefully now

Natasha & Joe

> OH I just read this on another group webring and thought you ought

to take it in to your neurologist before you started the

topomax/valp combo. Anyway, nice to meet you and hope things go well

in Aug. FYI topiramate ir topomax.

>

> Ally

>

" 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

Posted June 22, 2004 · June 22, 2004

Hello Carolyn,

From the paperwork I have checked, it is generally considered that

topiramate combined with Ketogenic diet is safe with proper

monitoring.

From an abstract written about a small trial looking at question of

Topiramate and the Keto diet printed in Epilepsia 2002 Sep:43(9):1072-

5 the conclusion stated:

" although most children did experience a large decrease in

bicarbonate levels, this mainly occurred when a ketogenic diet was

first added on to topiramate therapy. They recommend that patients

taking topiramate with the ketogenic diet be monitored carefully and

treated with bicarbonate supplements as needed " .

My own son was on topiramate when he started the diet and he did not

have any problems combining the 2 therapies, although in fairness, we

did get him off the meds quite quickly.

Good luck. Hope things go well - keep us posted.

Emma .

> > OH I just read this on another group webring and thought

you ought

> to take it in to your neurologist before you started the

> topomax/valp combo. Anyway, nice to meet you and hope things

go well

> in Aug. FYI topiramate ir topomax.

> >

> > Ally

> >

>

> " 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

>

Posted June 22, 2004 · June 22, 2004

My son is not yet on the diet but has been on Topamax and one concern that I

would have is the effect that the medication can have on appetite. As you

may know Topomax can be a very strong appetite suppressant, it works so well

in this regard that the manufacturer applied for approval as a weight loss

drug.

Mike

_____

From: ketomum68

Sent: Tuesday, June 22, 2004 5:07 PM

To: ketogenic

Subject: Re: Hello!a new member from France!!!

Hello Carolyn,

From the paperwork I have checked, it is generally considered that

topiramate combined with Ketogenic diet is safe with proper

monitoring.

From an abstract written about a small trial looking at question of

Topiramate and the Keto diet printed in Epilepsia 2002 Sep:43(9):1072-

5 the conclusion stated:

" although most children did experience a large decrease in

bicarbonate levels, this mainly occurred when a ketogenic diet was

first added on to topiramate therapy. They recommend that patients

taking topiramate with the ketogenic diet be monitored carefully and

treated with bicarbonate supplements as needed " .

My own son was on topiramate when he started the diet and he did not

have any problems combining the 2 therapies, although in fairness, we

did get him off the meds quite quickly.

Good luck. Hope things go well - keep us posted.

Emma .

> > OH I just read this on another group webring and thought

you ought

> to take it in to your neurologist before you started the

> topomax/valp combo. Anyway, nice to meet you and hope things

go well

> in Aug. FYI topiramate ir topomax.

> >

> > Ally

> >

>

> " 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

>

Posted June 22, 2004 · June 22, 2004

Carolyn...

WELCOME,

I am very new so I won't offer any advice other than to tell you that you are in

very good hands here!

We have been on Keto for 8 weeks so far and we are seeing wonderful results!

I will keep you in my prayers!

Please keep us posted~

There are better days right around the corner!

Dina

Mom to Sydney age 3

Re: Hi ! I am a new member

Thanks Ally

We have already started valproate and ph has been taking topamax

for quite a few months.So I guess we have to watch him carefully now

Natasha & Joe

> OH I just read this on another group webring and thought you ought

to take it in to your neurologist before you started the

topomax/valp combo. Anyway, nice to meet you and hope things go well

in Aug. FYI topiramate ir topomax.

>

> Ally

>

" 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

Posted June 23, 2004 · June 23, 2004

Carolyn-

My infant son had some of the same issues, your son is currently dealing

with and his diagnoses so to speak, were an unknown disease.

Unfortunately my son was really sick and the disease got the better of

him a couple months ago at age 14 months old. He lived a year longer

then the doctors had expected, and I accredit that with reducing the

medications and being on the diet. He was an absolute gift, and I would

trade him for nothing except a healthy Ethan. There are so many unknown

diseases' out there, and I know it's frustrating not to know what you're

fighting against. But I really feel the diet is a good consideration,

it can be a slow going, and take months to get the bumps straighten out.

So, hang in there, this might just be the answer you're looking for. I

have seen mentioned on this list a vitamin compound called Carn-A-Ware

created by a Doctor in the US and it has helped many with language,

cognition and much more. Below is some information that may be of

interest.

Carn-A-Ware is a nutritional supplement that has

L-Carnosine, Zinc, and Vit. E in it. Dr. Chez (from

Illinois) is the founder. At any rate, it is supposed

to improve cognition, language, and social awareness

in kids who have Autism or PDD and Epilepsy.

If you want more info his website is carn-aware.com.

As for Topiramate, I really didn't like the drug, but then again, I

didn't like any of the drugs and think lowering doses of drugs

especially while on the diet is of high importance. Please keep in mind,

the doctors don't always think that is the case, but there are posts and

posts here about children coming off the drugs while on the diet and

doing much better, my son was a good example. The less he had in his

system, the better he seemed.

Carolyn, I really like this group and think it could be of great help to

you. If you have questions ask away and if you don't get an answer, ask

again sometimes things get overlooked.

Hope this helps

,mom to Ethan 2/2003-4/2004

Hello!a new member from France!!!

Hello,

I hope I'll find some good advices on this list....My son 6 years

old has an unknown disease, he can't walk, sit down, talk, hold his head

properly, communicate.......and he 's got a cryptogenic epilepsy with a

lot of fits every day especially during the night....

Doctors tried every chimical drug but no amelioration so he's on

ketogenic diet since yesterday, we are in hospital...

I'll write you later

Could you telle me what you think about Topiramate and this diet?

Thanks

Carolyn

Re: Hi ! I am a new member

Thanks Ally

We have already started valproate and ph has been taking

topamax

for quite a few months.So I guess we have to watch him carefully

now

Natasha & Joe

> OH I just read this on another group webring and thought you

ought

to take it in to your neurologist before you started the

topomax/valp combo. Anyway, nice to meet you and hope things go

well

in Aug. FYI topiramate ir topomax.

>

> Ally

>

" 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

Posted June 27, 2004 · June 27, 2004

Hello and all members

Thank you for your advice,I'll try to order the supplement Carn-A-Ware ...

We 're back home and the first night back, seizures again all the night and

even this afternoon, I'm completely sad and disappointed!

I don't know that to do if I go back to hospital ,it will be the same after

a few days, This time we stayed over there nearly 3 weeks and nothing new!

aël is now under topiramate 50 mg, phenobarbital 100 mg and clonazepam

30 drops

And it's worse, I wander if he hasn't got very bad drugs' effects....He's

continually in fits!!!

Please, give us some advices, he's on K diet 5 : 1

Carolyn

Re: Hi ! I am a new member

Thanks Ally

We have already started valproate and ph has been taking

topamax

for quite a few months.So I guess we have to watch him carefully

now

Natasha & Joe

> OH I just read this on another group webring and thought you

ought

to take it in to your neurologist before you started the

topomax/valp combo. Anyway, nice to meet you and hope things go

well

in Aug. FYI topiramate ir topomax.

>

> Ally

>

" 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

Posted June 27, 2004 · June 27, 2004

He sounds plain toxic to me Carolyn.

Both phenobarb and clonazepam (the latter being part of the benzodiazepine

family) are drugs noted as usually needing to be decreased when starting

the diet. Ketosis, especially at a high 5:1 ratio will possibly be

strengthening the med effects. Toxicity can induce or aggravate seizures,

and sadly this is sometimes why Drs pull kiddies off the diet saying it

'hadn't worked'. Any good that might be done seizure wise can be masked by

the seizure inducing med effects when too many drugs are on board.

What are his ketones registering at, and why was he put on a 5:1 ratio?

What dosage does 30 drops of clonazepam equate to in milligrams? Was this

increased in hospital? And how old is he?

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

Hello and all members

Thank you for your advice,I'll try to order the supplement Carn-A-Ware

....

We 're back home and the first night back, seizures again all the night

and even this afternoon, I'm completely sad and disappointed!

I don't know that to do if I go back to hospital ,it will be the same

after a few days, This time we stayed over there nearly 3 weeks and

nothing new!

aël is now under topiramate 50 mg, phenobarbital 100 mg and

clonazepam 30 drops

And it's worse, I wander if he hasn't got very bad drugs'

effects....He's continually in fits!!!

Please, give us some advices, he's on K diet 5 : 1

Carolyn

Posted June 29, 2004 · June 29, 2004

Suzan,

Thank you for this mail, that confirms what I thought!

I 've decided to decrease phenobarbital because Nath was very bad with a lot

of seizures like an overdose!!!!This night he's had 3 seizures...I'll see...

Here in France Drs don't believe in keto diet, it's really a pity!

aël is nearly 6 .

At hospital they have just check if he's on ketosis and that's all, I haven't

got any numbers...I don't know neither why he's put on 5:1 ratio....I'll try to

recalculate every thing to check by myself the doses he must have...I'm looking

for every little advice and information to calculate the diet.

For the clonazepam 30 drops equate to 3 mg .

In the last 3 weeks spent at hospital they increased clonazepam and they put

phenobarbital ! But still seizures every night...

Nath is very weak, white I'm worried.

Thank you all for your responses

Carolyn

Re: Hello!a new member from France!!!