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.