Atkins

March 6, 2004

Hi Cammie, Marsha and Kathy,

Thanks for answering my questions about keto sticks. I guess that is

what I have been using already. There are several versions of Atkins and

" Strict " Atkins is my name for the type of Atkins my 7yo son is on as

it is the strictest of the versions carb-wise. He is limited to 10 gms

of carbs per day, but has unlimited proteins and fats. Actually I try to

have him eat more fat in order to keep his protein lower.

We got started on the Atkins about 6 weeks ago when the neuro told us

that since my has failed several drugs already (horrid side effects

and 2-4 szs per hour) that we now need to just run through the next 10

drugs as quickly as possible. He told me probably none of them would

work, but that we needed to try anyway. He then described his next 3

choices. He said the first one could put in the hospital with a

bad rash, another one is totally untested and the 3rd " might make all

hell break loose " (his words). He said after we fail the first 2 of

those we would take out of town to explore focal point surgery (so

far he thinks has generalized sz, but with his meds he began having

what looked like complex partial+).. Hmmmmmmmmmmm--great choices, don't

you think???

You all have BTDT. My son only started szs this past August (with a

hundred or so per day) and I am anxious to avoid the medicine upon

medicine side effects that I knew could happen (just as you all feel

too). I wanted the first pill to work, but it didn't (the side effects

were worse than the szs imo). I also knew the keto diet could work and I

figured the sooner the better, especially since his sz activity is so

new.

So I asked the neuro about the Keto diet. He said that he was trained in

it by the head man at s Hopkins (I forget the name--he was the big

guy years ago). But my neuro said that my son wasn't ill enough for the

diet and suggested I try Atkins. I jumped at the chance, knowing that

Atkins is being tested by JH and that it seems to be helping like the

keto diet. I insisted that if we try it it had to be without the new

drugs and with a wean of the old (doc wanted to wean anyway due to bad

side effects)

The doc " ok'd " me (why do docs have to ok things we feel is best for our

children?) to start Atkins plus to delay the start of the new drugs for a

month or so (or until I quit the diet). He could not give me any

guidelines. I have gleaned everything off this list. (I researched the

keto diet book months ago, but lost all my books and notes in the fire

that consumed my home and neighborhood). I was scared to do it myself,

but its also scary to give a strange med to my son.

Anyway, the first day of ketosis my son was completely sz free. Most

days he has 0-2 szs. He has had at the most 4 szs in a day which I

suspect is from the sugar alcohols we have allowed on birthdays and other

occasions about once per week (we have 10 children, expecting another in

3 months so we have a lot of celebrations). I need to take him off the

sugar alcohols to see if he is completely sz free.

I am not weaning off the Atkins, but off his last drug, zarontin.

He is down to 5 pills per week, next week he will have 4 per week and

soon he will be completely off. I noticed his sz activity has dropped

with each drop in meds. My son is back to his old self, he is able to do

everything learning wise like he could before drugs (he lost all ability

to read, memorize, play violin, do math--we had to start all over again).

I have to say that Atkins has not been easy. He cried non-stop the first

4 days wanting to eat his fav foods, oatmeal and bean burritos, and was

in a bad mood for the first 2 weeks (I figure from the change in diet),

but he is over it and cooking/measuring his own foods. My 4yo cried too

for that first week because he wanted to eat his brother's food. He was

already jealous that got pills and he didn't. And I admit that the

first several weeks I spent hours figuring out each meal for while

the rest of my family starved

I hope that answered your questions. I am just learning and wish I had a

keto team to help, but I am glad to at least be able to do this, even on

my own. This list is invaluable as I learn so much.

thanks again,

Pam

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March 7, 2004

Dear Pam,

Many thanks for your reply, of course people with epilepsy aren't that sick on

the scale of things, but however do have the potential to be seizure free

sometime in their life. However your son like so many member's children are at

an unique age where they have the ability to try a different method of seizure

control/elimination, the keto diet!

Ok, so at 45, I have nothing to complain about, I've been seizure free for 15

months and if all goes well and I practice taking my meds and eating what I

believe helps too (along with using a VNS), there's no reason that the seizures

will re-occur - now that would be bliss!

As you may already know, people who respond well to the Keto diet won't need to

continue with it beyond three years and may even be meds free too. In my

specific case, back in the 60's meds were given out like sweeties since that

was the fashion and the diet wasn't a consideration. So now The National Health

Service (NHS) is obliged to provide me with approx. $ 8'000 (net) in meds per

year, a VNS $ 10'000 per 8 years and all the consultations that go with it -

around 5 per year. Thankfully I don't have to pick up this tab personally,

but getting to my point, could it be your son's consultant is afraid of losing

him as a client/patient from his books, should your son become seizure free

because of trying the keto.......... It begs the question ?

Best wishes,

Phil

Atkins

Phil,

Thanks for the website. There is a keto center in the town where I live.

And my son's neuro is keto-trained (he says), but so far he has said my

son is not " sick " enough to do the keto diet (of course my son is sick

enough to " try " surgery) plus the doc said he has never seen a family

stick to it long enough to do any good. He wanted me to try the Atkins,

probably because he thinks we won't stick it out, but he doesn't know our

family. He is waiting a report from me and I am hoping to press him to

allow my son to go to the center (if he says yes, my insurance will cover

it in full, if no I have to pay.). In the meantime, my son is doing very

well on the atkins. And it would make a transition to the keto diet

easier, most likely.

thanks,

Pam

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March 7, 2004