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Re: Re: New Diagnosis

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Hi Debi,

Yes I have heard of it a few times. I end up reading up on it every time

it's brought up (which has been 4 or 5 times in the time we've known of her

epilepsy) :)

I keep forgetting the details of the diet and thinking that maybe she is now

at a point where we could do this, but after reviewing it again, she still

would starve to death on that diet, too much of what they want you to eat

she won't eat, and what she will eat she shouldn't eat (if on the diet)

Her seizures are actually under control much better than many that I've read

about. I've read about children who, even on medication, have hundreds of

seizures a day. To the best of our knowlege only has seizures every

couple weeks, and anytime she has an illness (which is common on the diet as

well)

From what I read, implementing the diet can not only be difficult but

dangerous as well and is recommended to be done only under dr. supervision

with tests along the way to get to the right ketosis levels or something.

If I thought I could get her to eat the stuff on that diet I'd be willing to

give it a try, but right now she just wouldn't do it. :(

But thanks for suggesting it! :)

>

> Theresa, ever considered the ketogenic diet? I've heard it's difficult

> to implement on younger kids, but wanted to throw it out if you

> haven't heard of it. I think Mayo Clinic figured it out back around

> the 1960s or so. I met one woman locally whose daughter was having

> many seizures/hr with multiple meds, she was completely seizure free

> for a couple of yrs & was just about to start weaning off the diet. I

> lost contact with her so I don't know how it all worked out.

>

> There was also a study not too many moons ago about the possibility of

> metformin used to control epilepsy because under some situations it

> could mimick the ketogenic diet.

>

> Debi

>

>

>

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That's ok and No worries, I don't think it was you who has suggested it

before. A person on another group I'm in suggested it awhile back and then

my mom read an article in her paper about it and called and said I should

look into it too... and there's been more too, but like I said I don't think

it had been suggested in awhile and not since I joined the group here. :)

Yes, seizures do seem so poorly understood. I can't tell you how many

neurologists we've seen over the last 5 years and each of them have said

that she is a complicated case. Mainly because they have no clue as to why

she has seizures (which I know is common) but they have yet to even be able

to see seizures in her when connected to any type of monitor. I guess

because they are not all that frequent it's difficult to schedule an EEG and

catch a seizure. All her scans and tests have always come back normal.

There was one time when she was in the hospital that she had a seizure while

they were still hooking her up to the machine, but because she was not yet

fully connected they hadn't started the monitoring, by the time they did,

she didn't have anymore seizures.

I would say she's healthy otherwise although I guess that could be a

relative term, she was tested for mito disorders... even had a muscle biopsy

to rule it out difinitively and they didn't find anything that was out of

the ordinary for her (there was some muscle death - but it was consistant

with someone who had not used their muscles for awhile, and considering it

hadn't been but a month that she had started walking again after her biggest

seizure, that was to be expected) and all else looked good.

She has ADHD as well, she's had tubes put in her ears 3 times now and her

tonsils and adnoids removed due to frequent illnesses from them (and

hospitalizations from seizures from those illnesses) and she gets sick a few

times a year.

In comparison to my older daughter, she does get sick a lot more than she

does... but there's a big age difference and it's gotten better as

has gotten older too. Fewer illnesses throughout the year.

She did have an immune test a few years ago because she got sick so easily,

but they said that her immune system was fine.

So while she's not the healthiest kid, I don't think it's anything that is

terribly unordinary for a kid her age.

Theresa

>

> I understand & apologize if I've mentioned it before. Yes, I would

> imagine a very close dr supervision & I get the issues about them not

> eating. <sigh> Seems seizures are SO POORLY understood/treated. It's

> so frustrating. At least with mine we don't think I've ever lost

> consciousness so it's not that big a deal.

>

> Is she healthy otherwise? I read a lot about seizures being a

> cohabiting condition with mitochondrial/metabolic disorders. Generally

> those kids are sickly.

>

> Debi

>

>

>

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