Re: Sad Day- Langan coming off keto /Kristi

[Guest guest]

Kristi,

Thank you so much for sharing your story with me and for giving me

those words of encouragement. I hope your daughter's situation

improves as she gets more carbs! Her name is beautiful, by the way.

= )

I don't know what Langan's underlying " issue " is, but it does look as

if it does not mix with keto- at least not now or not long term. I

am so thankful for trying the diet and giving it 100%, and I am still

not totally convinced that we can't make it work on a lower ratio.

But even if we can't and we have to go back to the meds, I am so

thankful to have met all of the great parents here!!

Thanks again!

> I do not write often because I do not feel as much as part of the

group since we came off keto in January but I do read everything that

comes in. Your email really hit me hard and I had to write back. My

daughter Wyaema, started the keto diet in March 2003 and by August we

were med free. We went 14 weeks without seizures and we thouht we

were doing pretty good. However Wyaema was loosing weight and not

developing, and seemed always moody. We decided in January to take

her off the diet. In March we had to put her back on Trileptol. I

hated to put her back on meds but we would go a few weeks without

seizures and then we would have a really bad day, and everytime she

got sick her seizures got bad. We have now started gaining weight, we

are at 16.8 pounds and starting to slowly develop more. We are still

not sitting up, completly on our own. We do not laugh and giggle and

play. We pretty much sit around assisted or lay. I really think the

diet ended up slowing her down, even more,

> developing because of such little carbs. Wyaema will be 2 on Oct

9, we are at a 6 month level. Dont get discouraged about the

trileptol and dont get discouraged about coming off the diet. You are

doing what is best for your daughter. Keep your head up, I know there

is a bright future ahead for our kids. The trileptol only made Wyaema

sleepy the first couple of days but has really helped control her

seizures, 1 med is better than 12. I hope this letter gives you some

kind of hope.

>

> Kristi Mother to Wyaema, 20 months, keto kid from MArch 2003-

January 2004

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> Kristi Mann

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> Smile make everyone wonder what your thinking

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> May God Bless you today, tomorrow and always

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