Re: Welcome Back, Gretchen!/Gretchen

[Guest guest]

Gretchen,

I have no idea how Langan can be so cheerful during the day. She

sure fights sleep- I think b/c she knows how scary it will be when

she falls asleep. I have no idea what on earth happens when she

sleeps that doesn't happen when she is awake, but it is a mess. We

get through it as best we can. I get strength knowing that, no

matter how hard it may be on me, it is harder on Langan. And if she

can keep smiling and be so brave then it is the least I can do.

We have Langan's nanny, who is also a nurse, who is the only person

we ever leave Langan with. We don't get out much. I guess that is

an understatement. I am not sure we would get out even if we had

family here. I just miss her so much when we are apart. We have

such an incredible bond. I know it's not healthy for me or the

marriage to not have time away, but none of this stuff is fair to

Langan to begin with so we just make our own rules. You know how

that goes!

Once Langan fell asleep last night (and it is always a mess b/c she

tries to stay awake and then screams at every tiny sound or movement

until she is out) she slept better than she has in a while. She had

a sz at 4:30am but went back to sleep after and was pretty peaceful

before and after. She actually crashed until 10am! I guess after

so long without good sleep, her body needed it. She is in fine

spirits, now, though. Until bedtime.... Ugh...

Thanks for checking in on us. I hope all is well with you guys!

Hang in there!

> > 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!!