Wednesday, June 4, 2008

Breaking Records

I know it's been awhile since I've updated, but I've just been having such a hard time dealing with things.

So let's start with the good news. We've made it passed our dreaded 8 week milestone. We've never made it longer than 8 weeks withough a major status seizure and hospital trip. This week will be 10 staus epilepctus.

It's been so hard to see Ava struggling with the drop seizures again, after almost 4 months of "freedom". I've just been so sad to see this happening to her. She just wants to be a "normal" two year old sooo badly, and absolutely HATES when we have to make her take a break from the sun, or physical activity when she's having a bad cluster of seizures. My heart has been very, very heavy these past few weeks.

I'm really having some serious reservations about putting any more time into the diet, as what we are seeing daily is telling's not working. We've had discussions back and forth. Neuro, me, Matt, neuro again. We weren't able to see the out-of-state (Mass.) Dr. we had our hearts set on, and will have to wait to for our 2nd choice to squeeze us in the end of July.....which right now...seems like forever. I'm just not feeling 100% about terminating the diet until I feel like we've exhausted every possible option with it. I need a good, experienced set of eyes to look at our menus, mealtimes, every little thing we're doing....and see if there is anything different that would help us get better control.

There really isn't any other anti-epileptic medication that is on the table for us right now. All the choices we have left....aren't good ones. Somehow....something just has to give for Ava. The Clobazam seems to help a bit. Especially the first few hours after she takes it. I called neuro yesterday to see if we could add a small afternoon dose, and see where that takes us.

Madison and Christian have been soooo busy with sports, school plays, and end of the year stuff. It's been a lot of running around to baseball games, softball practice, school play rehearsals, performances...etc.

I wish the sun and heat didn't irritate Ava so much, as it makes it really difficult for us to have "fun in the sun" so to speak. We signed the kids up for a 1/2 day camp and 15 field trips over the summer. They are totally psyched to start (after the summer we had last year)! Most of their school friends will be there, and it will give me a few hours to get organized in the morning.

I've been swamped with appointments trying to get Ava ready to transition all her therapies from Early Intervention into the school system (on top of all our regular appointments)! Lots of "seizure" talk....which I've had up to my ears of these past few weeks! I'm soo worried about how she's going to do in school physically. Heat, loud noises, and sunlight are major triggers for her. We're still working out the details, but I can already's going to be a fight for us to get what she needs to be safe at school next year.

Well off to make some more Ketogenic meals!

1 comment:

JSmith5780 said...

So sorry to hear that you are struggling right now. It's amazing there has been no SE but it'd be much better if there were no drops either!

Do you know Mira on the IS group? She finally found luck for her drops with Lyrica. I know they are making a small reappearance but she did manage months SF on it. It's not mentioned much so I thought I would offer it up. I know, I know, like you ahven't scoured every site you can for options ;)

I am sorry you aren't getting to see who you wish up in MA. Hoepfully your second choice will prove to be as good!

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.