Monday, January 21, 2008

So Far So Good

Well, we're day 5 into the diet and things are going pretty good. We noticed about 5 or so eye rolls this morning, but no falls. She had tons to drink during the night...so we're going to cut back on her drinks tonight to see if all that extra fluid affected her seizure control.

Poppie came over for dinner last night, and couldn't believe how nice it was to not be constantly worrying about Ava falling. We've been letting her walk up and down the stairs and not stressing about her going into the bedrooms by herself.

I usually hesitate saying things like this after all we've been through.....but I really feel like we have our lives back!!! Ava was having anywhere from 15 to 40 falls per day before the diet. She even had a pretty nasty partial our first night in the hospital. We're all just in total awe of the extreme change in seizure control we've seen in less than a week, even with a few minor ones popping in.

She hasn't fallen one time since we left the hospital (that was seizure related)...although she has had no problem tripping over her toys. She did, however go out of her way to pick an old french fry out of a crevis in our car and gobble it down before my arms even moved!

Thank you to everyone who was praying for us, and to everyone who encouraged us.

It's just one day at a time.

1 comment:

baby trevor's mommy said...

I'm SO happy, Rebecca! I know how you guys were praying before Ava started the diet! And I'm just SO happy...

and the french fry - too cute!

...danielle
www.trevorshope.blogspot.com

About Ava

Ava Simone LaBonte was born December 1, 2005, a healthy baby. She was a happy, healthy, normal baby until six months old, when we noticed some odd movements, which we thought were exagerated startles. Ava had her first EEG at 6 months, and it was normal. Six weeks following the EEG, Ava began having head drops....and we knew this time, something would show up.

At 8 months old, Ava was diagnosed with Infantile Spasms, a rare form of epilepsy. She was treated immediately with a 4 week course of ACTH. Ava spent 6 weeks "seizure free". All of Ava's MRI's, CT's, and blood tests have been "normal".

On November 20, 2006, Ava had a grand mal seizure which could not be stopped, and she was put in a drug induced coma. We left the hospital on antiepileptic medication, and have been on medication ever since. Ava is currently diagnosed with Generalized Epilepsy.


So far we've tried the following medications: ACTH, Trileptal, Keppra, B-6, Depakote, Carnitor, and currently on the Ketogenic Diet.