Friday, January 15, 2010

A Letter

Dear Dr. Neuro:

I know it seems strange, me writing to you and all, but, well, to be honest, every time we talk there are so many other things going on, it never seems like the right time.

I'm desperate. (Like you don't know this already, but I figured I'd spell it out anyway).

I'm loosing my daughter.

What once was a 3-6 month delay has creeped up to 18-24 months. She can't eat, she can't sleep, and she can't go out anywhere. The seizures are destroying her.

I've noticed that the spark of optimism we used to have for her future has dwindled. I can feel it.

Dr. Neuro, I just want you to know how much we love you for Ava's doctor. You have given me the freedom to be more than just her mother, but a decision maker. You've let me make mistakes, and learn from them.

By putting trust in me, you have helped me to trust myself with her.

You've seen her from an innocent 6 month old baby to a 4 year old girl. I know I can be pushy, and well overly agressive sometimes. I can be difficult, I know.

But, she is my baby.

My daughter.

I'm supposed to protect her from all this. Instead I've had to watch her suffer every day. Go through round after round of tests. ER visits , ICU stays, and almost loose her life.

So the reason I'm writing is to ask a favor of you.

I need you to support me in persuing the best possible evaluation for her. I really want to get this MEG test before we intiate the diet again, while she's seizing at her worst. Which is, well, right now.

I need agressive, cutting edge eyes to look at this test. We are risking her life letting her continue to seize like this. Our past visit to the ICU attests to that. The seizures will kill her before any agressive therapy will.

I know your not crazy about surgery. Especially for her. I know you and the others feel her PET and EEGs are non-impressive as far as her potential for benefiting from surgery is concerned. I also understand surgery is not a be all end all "fix" to our problem.

But just the simple fact alone that she been seizing over 100x per day clinically should be reason alone to push the subject for an indepth evaluation. I don't want to wait for her to be completely disabled for anyone to take a risk with her. We're loosing time....and I'm loosing her.

You owe this to her. A chance to live her best life. You owe this to our family. Most importantly you owe this to yourself, whether it's to prove yourself right, or better yet to give peace to a hurting family trying to save their daughter, sister, neice, and friend.

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.