Re: keto diet for generalized seizures ?

July 5, 2004

You'll get lots of responses to this question, Natasha. I'm

assuming everyone will say your doctor is wrong, that the diet works

for tonic-clonic seizures, too. Perhaps the earlier research was

for myoclonic and drop seizures since I believe those are more

difficult to control, so more kids with those seizure types went on

the diet. Don't quote me; I might be wrong in this speculation. I

can't speak from experience, because I don't really know what kind

of seizures my son had. Or rather, he had so many different seizure

types depending on what type of medication he was on. But, the more

convulsive type seizures were the first to go after starting the

diet.

Gretchen

> When I was talking to a doctors who supervises keto diet at sick

> kids in toronto,she told me the diet probably will not work for

> generalized seizures( tonic-clonic).She said the diet works best

for

> myoclonic seizures and drop seizures.I do not understand why the

> diet work for these types of generalized seizures and is less

> effective for others.My son has different types of seizures and I

> wander why degree of success we can expect on diet for t/c

> seizures , abcenses and complex partials.Has anybody had good

> control for other types of seizures as well on the diet or it is

> relatively rare?

>

> Natasha & Joe

July 5, 2004

Well it works for Francesca's tonic clonics and absences. The

myoclonics are seemingly the hardest to get control of, but she's

only had one today (we increased calories on Friday in an attempt to

fine-tune and get better control), so I would say your doctors are

wrong!

Every child is different - some get control straight away, some

don't, but it's so worth it just to get your child off the cocktails

of drugs (if you possibly can) even if seizure control is improved if

not completely eradicated.

Well that's my view anyway.

, Mum to Francesca, Keto Kid since Sept 03, drug free for 7

weeks now and fingers crossed getting somewhere with the myoclonics...

> When I was talking to a doctors who supervises keto diet at sick

> kids in toronto,she told me the diet probably will not work for

> generalized seizures( tonic-clonic).She said the diet works best

for

> myoclonic seizures and drop seizures.I do not understand why the

> diet work for these types of generalized seizures and is less

> effective for others.My son has different types of seizures and I

> wander why degree of success we can expect on diet for t/c

> seizures , abcenses and complex partials.Has anybody had good

> control for other types of seizures as well on the diet or it is

> relatively rare?

>

> Natasha & Joe

July 5, 2004

Natasha,

Our neuro told us the same info re: tonic clonic seizures, they are the

hardest to control. My daughter Stella has all types of seizures too,

the diet has dramatically worked for her drop and absense seizures, she

would have the myoclonics if she was having bad seizure days or with a

few particular medications (they seemed to bring them out), the diet

has decreased her tonic clonic seizures and so far very few myoclonics

(in the am) and drops. I think persistence and constant fine tuning

has helped us, but then again we are only at our 2 month anniversary

after initiation. I would try anything at this point other than the

drugs, seeing stella toxic, steven johnson's rash, unable to talk and

all the other side affects, the diet is so worth it.

There are so many parents on this group who can offer more advice as

they've been on the diet longer but I'll bet they'll all say it's

helped.

Best of luck

-mom to stella 5 years old, failed all meds, still taking

lamictal, diamox and diazepam, started keto diet 5/10/2004 and still

praying.

> When I was talking to a doctors who supervises keto diet at sick

> kids in toronto,she told me the diet probably will not work for

> generalized seizures( tonic-clonic).She said the diet works best for

> myoclonic seizures and drop seizures.I do not understand why the

> diet work for these types of generalized seizures and is less

> effective for others.My son has different types of seizures and I

> wander why degree of success we can expect on diet for t/c

> seizures , abcenses and complex partials.Has anybody had good

> control for other types of seizures as well on the diet or it is

> relatively rare?

>

> Natasha & Joe

>

> " 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!

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July 5, 2004

I am suprised that sick kids is still saying that - its very individual

by the child and the diet has helped all seizure types. And then again

of course there have likely been kids of all seizure types who have not

been helped too. It may have a better record with certain seizure types

but I totally disagree that you can say it does not work with certain

seizure types. I have seen on these boards all different seizure types

helped. has partial complex seizures that generalize so quickly

they look like tonic clonic to ER docs and even our pediatrician.

Apparently it takes a neuro to pick up on the signs. Anyway she

immediately went close to 2 years seizure free on the diet. Prior to

that no drugs had touched her seizures at all.

natashagainford wrote: