Re: Meds or no meds... that's the question

[Guest guest]

mariagildab wrote:

> What do you think, what's your experience?..Will the diet alone be

> enough for ?

Theres really only one answer to this question......you will never know

unless you try. Thats the only way to find out

> And another question, is it possible that a kid needs a lower ratio?

> I found a relation in being too ketotic and having increased

> seizures... Could this be possible? What do you do to solve it?

Yup, absoloutely possible. But I would leave the ratio alone for now,

wean the rest of the frisium. Have something like diastat on hand for

withdrawl seizures. Wait a good month to ensure he has stabilized from

the last of wean, then try fine-tuning diet

[Guest guest]

Hi Gilda,

I've been catching up here and on doose board ... our computer had to

go the hospital so I was offline for almost a week. What a pain.

I'm so sorry got a rebound of the rash. Poor baby... and poor

mom, too.... I hope he's better.

About the drugs.... well, you already know that I'm not a big fan of

AEDs. has been through a rough time lately. All of that

could certainly be causing his seizures, but who knows?? You will

never know what the diet can do until you get off the meds. You

might want to wait until he's completely over the rash. Then, if you

do decide to get rid of the meds, you might want to go slowly and see

what happens. It's such a dilemma because the sooner you get him

off, the sooner you can work with the diet and see what can be done.

However, withdrawal seizures are no fun, either, so I think only you

can know what is best for in that regard.

It is definitely possible for kids to do better with lower ketones.

My kiddo is one of them. She's not had a seizure at 160, but if she

stays there for a full day, she doesn't feel well at all. She does

best right around 80. She is almost always down at 40 in the

morning. She's been on 3:1 ratio from the beginning. Try giving

extra fluid to see if that brings his ketone level down a little

bit. If not, give him a teaspoon of apple juice in addition to the

fluids. Go slowly, but add a teaspoon of juice until his ketones are

down at about 80. By giving juice you are lowering the ratio a bit

without recalculating his meals. If you find he does better with

lower ketones, then you could officially decrease his ratio. What is

his ratio now?

BTW, our keto neuro told us she was going to stop the Depakote when

we were in the hospital starting the diet. Even though we were

prepared for it and it really WAS what we wanted, we were terrified

for the first few days off the drug. I think it is normal to hang on

to whatever we've gotten used to doing, even if it isn't working the

way we want...just human nature, I guess.

Good luck with your decision. You know best... I'm sure you

will make a good choice for him.

Cammie