Monday, March 3, 2008

And...We're Off

So it's official. We've been off ALL antiepileptic medication for two days and counting. How it happened, is, in my opinion, pretty comical. So here's whats been happening the past few days:

Ava still has the rotovirus, and we are currently on day 9 of random attacks of "the grip", although today did seem better. We only changed her 4 times last night, and Matt & I were commenting this morning on what a good night it was! (That's when you know things are bad, when your grateful your kid only had diarrhea 4 times in a night!)

Ava had been weaned off all medication except for her nighttime dose of Ativan. Our wean should have been completed 3 days prior to Friday, but quite frankly, I was feeling pretty hesitant to remove it, as she has been so sick and had spiked a fever earlier last week. In our house, fever=seizure=hospital.

So in the interest of full disclosure, I was just too exhausted to even deal with even one single seizure of significance, and things have been going so smoothly seizure wise. Why ruin a good thing?

So Friday night, Matt and I were watching TV in bed with Ava, and Matt nicely reminded me I forgot to give Ava her nighttime Ativan. I had a long day, and was feeling pretty settled in. My response was "Well, looks like tonight is the more meds." We both couldn't stop laughing....guess you just had to be there.

Things are going extremely well with Ava, considering she's had a stomach bug for almost 2 weeks. She has not missed any of her Ketogenic meals, and since our return from the hospital, we've only seen less than 5 myoclonic seizures, and a few absences. Prior to us starting the Ketogenic Diet, Ava was having between 15 -40 drop seizures per day. Random partials and complex partials, and countless absence seizures.

The diet has been a God every sense of the word.

Ava started physical therapy last week, as now that's she's not falling every 5 minutes, we really would like to see her build up some good muscle strength and start jumping and running again. She's slightly behind her peers, but I really feel once she's on the mend from this bug, things will really take off.


Kara said...

Are we allowed back over yet???? Or are we banned for life????

Kara & Avery

JSmith5780 said...

Good luck, hope the med weans are successful and the diet is enough to keep her SF

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.