Re: Gretchen

[Guest guest]

Gretchen,

What a sweet message! Thanks so much for thinking about us! Langan

continues to do well- a partial at night in her sleep some nights but

otherwise all is good. I am holding still to see if I can determine

the culprit- don't want to increase the meds if I can help it since

she is doing so well otherwise.

I hope all is well with you guys also! I haven't seen you post an

update recently. Is everything ok?

, mom to Langan

> Hi and ,

> I'm so glad to see that Langan and are doing well. It

> makes my heart sore. Little Langan, happy at last! And

with

> no seizures. Thanks for you nice letter, . More later.

> Gotta go.

> Gretchen

[Guest guest]

Hi,

I'm so glad to hear Langan is holding steady off the diet and you

haven't had to increase the trileptal at all. An occassional

parital and no acidosis must seem like heaven after what you all

have been through.

Ethan is doing great. The kids are back in school, including

Ethan who missed the last two months last year, so I am savoring the

time to be out and about in this nice fall weather and to start a

major kitchen painting project. But I do think of all the wonderful

people I have met in this group, and pray daily that their children

are improving. So, I lurk a few times during the week. I also want

to be around in case anyone experiences the same kinds of problems

we experienced in the beginning kindof like your posts about

acidosis. I know we can be of great help to other people here. I

never want to abandon this site.

THe final key for Ethan getting back to normal was starting

school. We tried counseling and relaxation to get rid of the

freezing episodes he was having. He had them regulary until the day

school started. Three weeks into school he has not had one at

school, and he only occassionaly has them at home, when he gets

stubborn (like his dad) and can't have things his way. School has

been great, because for the first time in 3 years he is just like

every one else (except for the food issue). He can stay on task and

follow right along. He finally realizes the benefit of this diet.

He has accepted it fully, and the other day said, " I no longer think

this diet is the worst thing in the world. " I think it is the

postitive mental attitude that has stopped the

pscychological 'events'.

I never would have expected things could be this good for

Ethan. We just never know what the future holds, do we? I guess

even at this point I don't know for sure. But I do have hope for

the very best.

I hope Langan stays well, and though they seem almost

insignificant now, I will also hope that those few partials go away.

Thanks for being there!

Gretchen

> > Hi and ,

> > I'm so glad to see that Langan and are doing well. It

> > makes my heart sore. Little Langan, happy at last! And

> with

> > no seizures. Thanks for you nice letter, . More

later.

> > Gotta go.

> > Gretchen

[Guest guest]

Gretchen,

That is WONDERFUL news!!!!!! I am so happy for you and for

Ethan!!!! I agree that you need to stick around- your story is

definitely inspiration to keep tweaking the diet until you get

success. Ethan sounds like he is doing so well- I am so proud of him

for realizing the importance of the diet. I think you are right-

that is a big part of the battle.

I am with you about never leaving this group. I don't spend as much

time here as I did before, but I do feel like I owe it to the parents

here to stick around and give my two cents when acidosis issues come

up. Plus, it would be like leaving part of the family. Although I

have only met one kid from the group (and that was AWESOME), I

learned so much here, found my fabulous neuro thanks to a parent

here, and have found the inspiration here to keep on going when

things were the darkest. This is really a wonderful family and I

just can't say goodbye!

Please hug Ethan for me. I am soooo proud of him!

> > > Hi and ,

> > > I'm so glad to see that Langan and are doing well. It

> > > makes my heart sore. Little Langan, happy at last! And

> > with

> > > no seizures. Thanks for you nice letter, . More

> later.

> > > Gotta go.

> > > Gretchen