Friday, November 14, 2008


I just wanted to give you all a quick update on the latest...

For some reason I just had a sudden urge last night to email the most sought after neurologist (for Infantile Spasms) in the world for his opinion on my hunch. I left out no details as to why I've been suspecting a connection with Austin's spasms and the left arm dominance.

And within hours I got word back...Can you believe that? Probably the busiest pediatric neurologist in the country responds to me quicker than Austin's own doctor (who really uses his nurses to respond).

He agrees with me. He believes that what I told him does suggest a focus. He said that would explain Austin appears to have a sensation in his right hand. Why the left arm is dominant. Why there is movement on the right side during some seizures.

Although nothing is confirmed through testing, I just feel a huge weight lifted off my shoulders. Nothing has changed, but somehow I feel better. Maybe because I don't feel so much like a lunatic anymore. This man agreed with me. Our nurse would barely even listen to what I had to say when I called about it last week. I seriously think she used her own judgement to determine what to tell the ES and that was that. When she called back, her response was no where near relevant to my questions.

I'm still in the process of collecting videos of Austin's seizures and writing a letter to send the ES. I want to know, without a doubt, that he gets all the accurate, unfiltered information and can even see for himself (as opposed to the nurse deciding what SHE thinks is important). Since I have gotten validation from the IS guru himself, I will know that if he dismisses me, I need to dismiss him!

Dr. C recommends that we go ahead with the vigabatrin. If it works, nothing more should be done, but if it doesn't, he wants to evaluate him in Detroit to see if he's a surgical candidate. Surgical? Scary, I know. I've tossed and turned over this one many times...even though we've never even discussed surgery as a possibility. But, I'm sure many parents dealing with this must secretly hope their child could be a candidate. That would mean possibly an end to this nightmare...a possible cure...possibly a relatively "normal" life...Could I do it? Could I let someone do that to my baby? If it meant his chance for seizure freedom AND a normal life...

That's not a decision that I can give you the answer to now. Even after all the articles, books, and success stories I have read. The fact is, EVERY case is different...which means different associated risks for every child. I can't even begin to fathom what an excruciating decision that must be to make.

I am just praying that this vigabatrin works, and we won't even be faced with such a decision.

We will just have to cross that bridge when we get there.


JSmith5780 said...

Five years into this journey and I still think Dr C is amazing. The fact he emails back EVERYONE who contacts him is incredible.

I still ahve my fingers crossed that vig will work for Austin!

Jamie said...

WOAH you are busy!
Oh man I hear ya...I always wonder what if they said madie needed surgery... Those Stupid Spasms...they are sooo hard to get rid of! With madie they just preogressed into anoter seizure! We were also opting for Vigabatrin..If I had to drive to canada myslef and get it I was ready!!but Neuro said she was just not heavy enough and he worried about effects on vision.. So we went with the Zonegran at the time.....dunno what might have been if we tried...
Depakote is I am hoping getting there we are weaning her off her Clonopin NOW!
Oh...fingers and toes crossed for Austin!! Looove the wagon pics.
hes like: "you like my ride ladies?" LOL
Take care :)Illl be in touch

Janna said...

Hi Holli! I saw your blog url on Ali's facebook page. What an incredible little boy you have and what a strong mommy your are!! I hope the best for you guys.

Janna Fountain Keever

Alana said...

Hi Holli! I just found out what you and Austin are going through via Ali's Facebook page as well. I will be praying for you both. Please let me know if there is ever anything I can do to help you.

Alana Inman