not a hater


I feel the need to clear the air on two accounts.


Trevy does not have Tuberous Sclorosis Complex. Several curious have googled their way here under that assumption. And I can understand why. Almost every other IS parent that courageously testified last week...has a child with TS. Who became seizure free on Vigabatrin. I felt a little like a sore thumb!


Actually...our journey to find the underlying cause of Trev's IS has been quite the roller coaster. Including our recent 3T MRI findings...which revealed PVL. A form of brain damage that was caused either before...during...or shortly after birth. And has a strong link to CP. No professional is willing to narrow the timeline. 'Cept me if I count...who has always maintained that Trevy being a "blue" baby meant something. Those with the MDs always argue that his Apgar's were normal...and gobs of babies pop out with the cord around their neck. To which I always nod...and say Yes, but do they have IS?


I DO NOT HATE ACTH! (although Questcor may be another story...which may result in another post...on another day)

I'm tempted to make a t-shirt...if only I were clever enough. Or one of those cute little rubber bracelets that are SO popular!

There was quite a strong ACTH-hate vibe during the FDA hearing last week. Some of the children represented suffered horrific side-effects. To no benefit. Only to later learn of Vigabatrin...a much less scary drug...which would become their child's miracle drug.

But try as I may (or may not) I just can't bring myself to hate ACTH. Side effects n' all. Because the bottom line is...a year ago I was holding a seizure saturated baby boy & ACTH represented Hope. And I was willing to risk all that mess to give Trevor a chance at seizure freedom. Just as I'm willing to risk visual impairment with Vigabatrin...in our quest for a miracle.

And that's the point entirely. My passion is not to eliminate miracles. But to grow them. To have MORE options. Not less. And to ignite a passion to find a cure. Because none of these (side effect laden) drugs are that. A cure. Not one of them.

And until we have one. I just can't hate the drug that gave Trevy a mini-miracle.


JSmith5780 said...

My passion is not to eliminate miracles. But to grow them. To have MORE options. Not less.
That line says it all!

Adesta said...

Danielle, I think you may have an arguement there about Trevy being born "blue". Haylee was born blue with her cord around her neck in a knot (so was I for that matter), and there is nothing wrong with her healthwise (she's just a nutty kid :) ). Her initial apgar's weren't that great, but by the time they got her breathing (5 minutes after birth) the scores were as close to perfect as you could get for a baby born not breathing.

Shanna Grimes said...

Not convinced that apgars are accurate either. Javi had apgars of 8 & 9. He was also blue, not breathing and had a knot and nuchal cord x's 3 (cord wrapped around neck 3x's). Don't know how you can get a one minute score of 8 when you aren't breathing, blue and have decelerated HR?? Javi ended up having Autism and ADHD, which may be totally unrelated, but it is somewhat fishy.

I agree with Jen. You are Miracle Grow ;)

~Mama Skates~ said...

haha, miracle grow - i like that! ;0)


KC's Mama said...

Interesting. KC was born with the cord wrapped around his neck three times. He wasn't blue, but did have trouble breathing. Needed an oxegyn hood and was in the special care nursery for four days. I asked the neuro last week to redo his MRI and he told me it wasn't necessary because we would have seen it on the one at 6 months. So not the case based on what I am reading about Trev. Anyway, I know it's not good news about the PVI, but at least it's some sort of clue right?
As always, you guys are in my prayers.


Mmmmaaahvelous said...

There's always so much to consider isn't there? PVI...
I fully believe that being "blue" at birth even for the shortest time makes a huge impact in a child. How can any professional deny this? Argh!
ACTH...I agree with you. The insureance companies...yuck! But the med itself did have a wonderful affect at one time and this brought hope and peace then. That's something to hold onto and know it can/will come again.
Yay for no TSC! That's one aspect that is crossed out and you don't have to deal with.
Again...you're doing great. Even when it doesn't feel like it. Just being able to hold onto hope and keep pushing the system/"professionals" is an example to all of us that miracles do happen. Thanks for this!:)