I think the very first med speak phrase we became familiar with upon entry into the Infantile Spasms Community was…
Benefit versus Risk
There is more clarity on the physician side of things. They think in black and white objectivity.
Not so much on the mommy daddy side, though. We think in the “Oh my God, this can induce what?” or “the vision loss is permanent?” murkier side of things.
Sometimes Benefit vs. Risk is really very subjective.
eenie meanie minie mo, if you ask me.
When removing portions (or halves) of brains, for instance. While the surgeon might look at me holding my completely non-verbal two year old through a cluster 50 strong and tell me there really isn’t any other choice. The trajectory is death. Which is ripped for our real-life story and is almost verbatim what Dr. Neuro-surge told us in his office. The conflict that murkied the waters was…I wanted to KEEP holding my beautiful non-verbal two year old son.
Murky Murky Murky.
Benefit vs. Risk is not really that easy.
It might look easy to you. If you’re not in the guts of it.
But I’m here (in the guts) to tell you. It is not that easy. It’s just not.
Which why we’ve hemmed and hawed over the whole weaning of the Topomax (affectionately or perhaps not so affectionately referred to among seizure parents as Dope-amax). Trevy has been on Tope since before surgery. To the best of our knowledge it never did a dang thing to benefit him. Seizure Mommy Lingo for reducing seizure activity. Sometimes we even consider a bump in cognition a benefit even if seizures remain the same. Tope has been a big fat dud as far I’m concerned. Although other than the inability to sweat side effect, it never really bothered him either.
But we’ve weaned enough meds to know that you don’t really know until you wean.
It’s been three years since we’ve weaned and I have a mad case of fuzzy brain but I do remember this…
weaning always kicked Trevy’s butt!
Like many, many seizure kids he would go through terrible withdrawals. His seizures would increase with each reduction. He would be miserable and sad. And I would be a wreck.
So even though I have passionately wanted to wean Topomax for over a year now. It’s scary. Murky.
The things I do rationally know could be benefits are…
one less toxin in his body on a daily basis.
Also, Topomax is known to be a Speech inhibitor. Not a great choice for a little one struggling with Speech Development! Removing the Topomax could help us see a bump in language communication. I’m a big fan of communication in any form but he has this super cute little voice that I want to hear more of! Except maybe for the screaming “NO” at me.
We did it.
We began the Tope wean on Saturday. The Plan is to wean one capsule a month until we’re down to none. He was taking six daily. It’s a sloooooooow, careful wean.
My emotions are frayed regardless. I’m sure they will be for the next six months.
So far I haven’t noticed any extra seizure activity. I’m watching like a hawk too.
And it could totally be in my (slightly crazy) head but…
I swear his stringing more words together!