Re: Welcome Back, Gretchen!:

[Guest guest]

HI ,

What you say about Langan just tears at my heart. How can things be

so good for her during the day and so miserable at night? And

considering how rough the nights are, how can she be so energetic

and happy during the day? What an incredible child! I want answers

for you so badly, and rest and peace... How are you getting

through all this? Maybe it is by seeing the sheer happiness of her

during the day. We learn to grab those moments and relish them. I

know you don't have family nearby, we're the same way; but I hope

you have trusted people who you can leave Langan with so you and

your husband can get out occassionally. (This is advice I do not

follow myself) Are you still working? I'm glad Langan isn't in pain

anymore, that is a relief, too. I'm always pulling for you.

Gretchen

> Gretchen,

>

> I was wondering where you were. So glad you are back online and

> sooo glad to hear that things are working out for Ethan on the

> diet. It is hard enough on a 2 year old. I imagine it is really

> tough on an 11 year old! Bravo to him for being such a strong

> little guy! I hope the counseling helps deal with the episodes he

> is having. Please give him a hug for me!

>

> Langan is happier than she has ever been- when she is awake. She

> laughs and is so interactive. It is unbelieveable to us. Her

> strength is getting so much better by the day also. It is the

> nights that are impossible. As soon as she tries to go to sleep,

> all hell breaks loose. She wakes up screaming or shivering or

> having a seizure or all of the above throughout the night. I feel

> so sorry for her. She won't nap during the day now, no matter

what

> we try. Can't say I blame her. I think she is just scared of

sleep

> time. Somehow she still manages to have tons of energy and be so

> happy during the day, but we can't keep this up. It is what led

us

> to finally try the trileptal, but as you read that didn't go so

> well. She was in the midst of an ear infection then so maybe

we'll

> give it another try, but nights are bad enough right now without

> making them worse! We have no seizure activity at all during the

> day (knock on wood that we keep being able to say that) but the

> nights are just hell for her. So we'll see what the docs

recommend

> on Monday. Any suggestions are more than welcome! This group has

> given me more great ideas than all of the specialists combined!

>

> Again, welcome back! We missed you!

>

> , mom to Langan, 2 yrs old and keto kid since 11/03; med free

> (except 3 days of trileptal) since 4/2/04, weaning from the diet

due

> to metabolic acidosis but hanging on as long as we can!!