Re: Re: MEDS MAKING THINGS WORSE--Barbara

[Guest guest]

Gretchen,

Yes, the doctors can be wrong, can't they ; ) They didn't start talking

about LGS until the drugs made everything so bad....so maybe?? If not, I

keep the success of Charlie Abrahams in mind (or maybe he was

misdiagnosed, too?).

If you plan to wean the diet in 18 months, then has you son be

seizure-free for 6 months, or so? Was it immediate after starting the

diet? Any med's now? I'm so glad he is doing so well. Of course no one

knows what the future will bring, but in a strange way, I guess we're

all fortunate to have learned to treasure the good times with our

children to the utmost. Nothing makes me happier than to see her happy.

I agree that positive weaning experiences would be great to hear. Not

that I'm giving up stopping my daughter's seizures completely (waiting

to see the results of the next eeg before changing anything just yet),

if the best we can do is limit them to sleep a few times a month, I

really worry about when we can wean the diet and what will happen.

~Barbara

gretchen_kissock wrote:

>

> Barbara,

> I know the exact feelings you had. First, feeling you'd lost your

> child through drugs and Seizures, and Second, getting her back! I

> just can't stop smiling these days. Doctors are often wrong; maybe

> the diagnosis is wrong. But, even with that diagnosis, I think

> things can turn out OK through keto. I'm not sure on that point; it

> is just what I think I have heard. One great thing you have going

> for you is your daughter's age. There is still so much growing and

> developing for her brain to go through.

> My son was never daignosed with LG,but his intractable seizures

> and cognitive struggles on meds stumped many nueros. They just

> would not admit it could be the drugs causing all the problems. I

> have no idea what would happen if we took my son off keto now.

> Would he be fine? Would he start having seizures again? I don't

> even know what will happen in 18 months when he comes off keto. But,

> boy am I sure enjoying this time and the tremendous strides he is

> making.

> I would sure love to see some posts by people whose children have

> come off the diet successfully. Especially, parents of older kids

> (10 and up or so. Does it work?

> Gretchen

>

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