Re: how is Langan?/Gretchen

[Guest guest]

Hi, Gretchen. I don't get here as much as I would like, but I just

popped in and saw your message. That was so kind of you to check on

us!!

Langan is doing well. We just take one day at a time. Who knows how

she'll do tomorrow. You know how that goes.... She went 35 days

without one of her typical seizures, which was a record for her. But

she had to blow it by then having an awake seizure on Saturday and

another seizure the following day. She has a way of waiting until we

are lulled into a false sense of security. BUT she seems none the

worse for wear. She is crawling more and pulling up. She will take

assisted steps but still has no balance and if you let go of her she

looks down and plops onto her butt.

I am glad you got to meet Dr. H. We LOVE her. We will be seeing her

in January for a VEEG, MRI and MRS. I am looking forward to it. We

haven't had an EEG since coming off of keto, so it will be

interesting to see what it shows. Langan is still on trileptal- more

than I would like her to be on but still not up to the therapeutic

dose. I am going MUCH slower than Dr. Holder recommended. Some

things I can be very stubborn about.

We head down to Louisiana for Christmas next Wednesday. It is only

an hour flight, but I am terrified. It will be Langan's first flight

since that nightmare airport experience in October. Wish us luck!!

At least I know New Orleans well enough to know how to get to the

hospitals if we need one, but here's hoping we don't.

I hope all is well with you guys. Update me when you get a chance.

I miss following everyone here!

Happy Holidays!

, mom to Langan, 2 yrs old and keto kid 11/03 to 9/7/04, weaned

due to severe persistent metabolic acidosis (now thought to be pre-

existing), now on trileptal, but keto kid at heart forever.

-- In ketogenic , " gretchen_kissock "

wrote:

>

> Hi ,

> My access to a the Internet has been sporadic lately, but I have

> been wondering a lot about Langan. Is she doing OK? I finally met

> Dr. H and almost wanted to ask her about Langan, but I know they

> can't say anything. She mentioned her patient from Louisville who

> is sending others her way. I didn't tell her we were originally

> assigned to her until my husband pissed someone in her office off

> with a very angry phone call. I harbor no ill feelings, we have

> loved Dr. F, and all has worked well for us. I'm just glad there

> are a lot of good doctors out there caring for our kids.

> I hope you and your family are doing well. I think of you a lot.

> Gretchen