New to Group

August 23, 2003

Pam,

If I could do it all over again, I'd have to say that I wish the diet was the

first thing we would have tried. It's too bad it wasn't offered. Of course, at

that point, I was naive and thinking the answer was just to give our daughter

the medication and that would make her seizures stop. You can't know that until

you try. Those of us who've been through the nightmare experiences could never

have seen it coming. My advice to you would be not to discontinue the

medication....... if you're concerned about it not helping (or not well enough

anyway) after only 12 days, you need to call and bug the neuro's office until

you get a call back from him. Some adjustments can be made. I'm not a fan of

Depakote but 12 days doesn't seem long enough to know for sure. Diet-wise, I

think there are some changes you could make to his diet now that would

help...... and would not interfere with seizure medications, but just could

possibly help. I would cut out ALL sugar and refined flour, all artificial

colorings, flavorings, preservatives and ALL hydrogenated oils..... this would

include " partially hydrogenated " ANYthing. That is trans-fat..... and just

absolutely ROTTEN for the the human diet. It should be considered poison. Try to

move his diet over to fresh, whole foods......meats, eggs, veggies, fruits. More

natural good fats such as butter (organic if possible), olive oil, and foods

that contain good fats..... nuts, avacados, etc. Don't use nut butters that

contain hydrogenated oil..... buy the natural kind with the oil on top that you

have to stir in. Avoid ALL Nutrasweet (aspartame).... that is often a seizure

trigger....... and MSG (monosodium glutamate). You have to read up on MSG (do a

net search) to find out how to sleuth it out on labels..... manufacturers have

sneaky ways they're allowed to slip it into foods. MSG is a neurotoxin and

you'll find it is in just about all packaged, pre-made foods..... canned, frozen

(except for plain frozen veggies) or boxed. This probably sounds like a lot of

changes to make...... but you certainly wouldn't have to get your doctor's OK to

change his diet in these healthy ways. Another diet approach to look into is the

Specific Carbohydrate Diet (or SCD). It's a little more restrictive.... though

not as much as the Keto diet.... but is very healthy and is currently giving my

daughter better seizure control than we had in our final months on Keto. It's

also a diet that you could do on your own, without medical supervision, and you

could keep the meds in place for now, perhaps weaning them away later with your

doctor's okay. For more info on SCD, go to www.breakingtheviciouscycle.info .

I know this must be a tough time for you right now..... it's so hard to know

what to do and why it's all happening. My almost 7 yr old daughter has had

seizures since early infancy, so I'm used to this being a part of our lives now,

but I remember how scary it was at first..... and how frustrating all the drug

trials were. No drug ever worked for us. You want the best for your child. Just

hone your instincts and stay true to them. I think the only " damage " that

absence seizures really cause is that they interrupt the learning process so

much. If he's having a lot of them, it will make learning nearly impossible. I

don't think there is any concern of actual permanent brain damage from that type

of seizure. Seizures do seem to breed more seizures, though, too..... so you

definitely want to get them under control.

Patti, mom to Katera, former Keto Kid for over 2 yrs, now on SCD 4 months and

doing very well.

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

Hello,

I am new to this group. I am also new to seizure disorders. I am

getting a crash course tho. My 7yo son, , began having seizures

(probably absence or atypical abs) about 4 weeks ago.

August 23, 2003