RE: Re: Sad Day... Attention: Kristi Mann...thanks!

[Guest guest]

Kristi-

I know you were not writing to me in particular, but just want to say

that hearing your story and struggles is appreciated by me. Of course I

wish they were not there, but since they have been, I thank you for

sharing. We lost our poor Ethan in April of 2004 (14 month old).

He was unable to do much...couldn't roll over, sit up, move arm/legs

much, he would cry off and on, but only when in pain or upset. It

became a delight to hear his voice, by that I mean; it was in our eyes,

an achievement. We tried every drug, and steroid that could be found,

and then ended up pushing for the diet last August. I think it helped

some, but untimely what ever his underlying issue was, got the better of

him. He was dearly loved by us, our friends and allot of the medical

staff (2 neuro Drs. In particular). Again, thanks for

sharing...although my son is no longer living; I find it difficult to

depart from this list, because no one understands our frustrations or

accomplishments quit like other parents who have kids with seizures.

, mamma to Ethan

Re: Re: Sad Day- Langan coming off keto = (Kristi

Mann)

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

Kristi Mann

Smile make everyone wonder what your thinking

May God Bless you today, tomorrow and always