1.09.2009

I've stopped & started this post at least four times already. I'm very tempted to blame it on the kids. They come in quite handy for just such a purpose. But the truth is...every time I try to put words to everything that happened the past two days...I just can't seem to come up with any that make me happy. And yet I can't live with myself if I don't at least make an attempt.

The Highlights

  • Meeting Jen Smith & Mike Bartenhagen in person. The connection that IS has given us runs deep. Down into the family center depths of the heart. At least my heart. Like we've always known each other. And eating dinner til' midnight was actually fun. Attempting to be up the next morning for the 7:30 meetings...not so much!
  • Having the opportunity to speak with Dr. Jeff Buchhalter (the pedi neuro representing the Epilepsy Foundation) on many topics. Including Trevor. Which he admitted is a difficult case...but gave me renewed passion for pursuing surgical intervention. He also is a passionate fan of the Keto diet. Not an easy choice for me. Trevor loves food. LOVES food. And with the seizures already stealing so much life from him...I'm just not sure I'm ready to steal food as well. Especially when I have not met an IS child whose seizures have been controlled by the diet. It's just so tough...ya know.
  • Being in the same room as Dr. Chugani. A real live IS rock star. ::smile::
  • Seeing the wonderful presence the TS Alliance had at the hearing! They had a table set up...and packaged emails from TS/IS families...and several families testified! It was beautiful! 'Cept all those families testified before me! By the time I got up there...my eloquent testimony turned to a blubbering mess! Fortunately...my testimony wasn't really needed anyway!
  • Being a (small) part of history. If Vigabatrin gains FDA approval...it will be the first drug in the US to be FDA approved for the treatment of Infantile Spasms. It's a big deal.
  • The advisory panel voted 25/0 in favor of Vigabatrin being FDA approved! (Told ya my testimony wasn't essential!)

The Lowlights

  • The flight. Down particularly. It's not very comforting when the flight attendants inform the passengers drinks won't be served due to turbulence!
  • Spending 24 hours away from my family. I'm sappy. Toby is too. He told me this morning that he can live one day without me...but two??? No way!
  • Saying goodbye to my IS peeps.
  • Worrying that FDA approval will really help at all. It seemed like more red tape was being added to the process than eliminated. Registries & workshops & other FDA requirements met before a doctor has the privilege of writing up the script. It would be such a shame if FDA approval actually complicated the process more than it currently is.
  • Seeing how the FDA operates. Don't misunderstand. It was interesting. And I certainly don't regret being there. But it's disheartening to see a room mostly filled with pompous peers & even pomp-y-er words. And eyes which seemed to light only when the mouth belonging to the same host was speaking. A token IS parent (Mike B) was on the panel...but vote he must not. For evidently one must have no bias towards drugs that may save the life of their child when one is given the opportunity to participate in FDA hearings. It didn't take me very long to feel like the Open Public part was just a charade. An obligation. Something to be endured. Or napped through. Which is probably a part of why the heart-felt testimonies of the fellow IS families affected me so deeply. I know the same story. It courses through me too. But all our combined emotion hit a force field of objectivity. In fact...the public was pep-talked to hold their feelings at bay. No clapping. No standing. No saying. No nothing. Just sit there and be good little obligatory participants. And all that very heavy...very personal...very important...emotion fell flatter than a pancake as soon as our three minutes each ran out. Three minutes. That's the time allotted to the people who are really affected by this drug. This decision. Color me jade. Seeing how the FDA operates was a lowlight.

4 comments:

JSmith5780 said...

I could comment on every single one... but will save you all :)Though my personal fav was the two days comment by Toby!

If possible my flight back was WORSE than my flight down. It was questionable if the plane was going to stop. If a plane can fish-tail, it did. NOT FUN!

~Mama Skates~ said...

ok, it's official - i'm never flying!

and i agree - toby is too darn sweet!

glad u r glad u went - whether u think ur testimony was needed or not! i'm disheartened to hear how the FDA works - but glad it's not slowing down progress for u guys!

congrats on the 25/0 victory!

Shanna Grimes said...

A triumph! 25/0 victory! Can't beat that! Thanks for alway putting yourself out there to represent out niche community. It's nice that we have such a wonderful set of lungs always willing to speak out for those affected by IS. After hearing everyone who was there, I'm wishing I could have gone.

Mmmmaaahvelous said...

It went through?! That's VERY good!
My heart is heavy after reading the last half of the post. It's so disheartening when these topics are so dear to us and LIFE CHANGING...yet the power's that be become cold & hard and jaded and all knowing...disgusting really and so typical of everywhere!
All anyone can do is keep trying. Stand up and speak. Just like you just did. I'll say it again...PROUD of you!
Oh, what I would give to have been able to see the TS Alliance table and talk with those people! There's so very, very little here. No chapter in Calgary, our city of over 1 million, no specific clinic, nothing...so that would have been wonderful for me. One day....one day TSC support will be prevelant for all.
Talking with the Docs...that must be inspiring to just keep going. Re-energizing.
And seeing your family again....heartwarming.
Enjoy being home!
M