Wednesday, July 29, 2009

Med Update

In addition to the new EEG developments and LGS discussion, we also touched on meds at our last epi visit.

You may remember the mention of Felbatol in one of my previous posts. We actually decided at that time that we did not want to introduce it just yet. Too many pending questions that could have easily left us scratching our heads and confused. Stopping, weaning, and starting meds for Austin at the same time is not a good idea. Many factors to consider.

Plus, the warnings online for the med scared me senseless. It's considered a Black Box med. Meaning, there have been serious safety hazards and therefore must contain a warning stating those risks in a black box. Depakene (valproic acid) also carries similar risks. Austin handled that one like a champ though. But, before we started it, it took serious persuasion on our epi's part to convince me it would be okay.

Quick facts:

Felbatol can cause liver and blood complications. So, it's vital to have routine lab work to monitor any changes in the blood or liver function that could occur.

That's why it should never be used as a frontline med. It should only be used in severe cases when many other AEDs have failed.

As dead set against it as I was in the beginning, we did decide to give it a go. After the epi sat us down and thoroughly explained it, we felt much more at ease. He told us that there have been very little, if any, fatalities in young children. He also said that the majority of the serious complications have occurred in adults. I don't think it's even recommended for adults anymore actually. Anyway, he said he would not recommend it for Austin unless he was confident that he could tolerate it.

We will need labs every two weeks for the first few months. Also, it's a fairly concentrated liquid so he will not need much at a time. We will start slowly with .5ml three times daily and work our way up to 2ml three times daily over the next four weeks.

Although this has proven to be a med that helps when others don't, I'm still weary about it. Anxious to see results, but realistic and logical at the same time.

Well, let me get honest here. That's what my brain says. My heart always, ALWAYS hopes it's the one. There's no rationalizing with my heart or talking logic to it. It feels what it feels.

And right now, it's feeling desperation. For just a little help here. Some relief. With no major complications. Or side effects. Something that will benefit him. That will continue to let him see past the fuzziness. Not bring him back down.

So, while my brain keeps the sense in check, my heart really wants to give it a chance. Talk about an internal struggle.

I've gotta keep reminding myself that every new med has potential. Every new med could be our chance. Even if others have failed. We've gotta keep trying, right?


blogzilly said...

Even though it sounds like reaching, the truth of it is that yeah, every new med really COULD give you what you seek. It isn't in reality a 0% chance. So keep hoping and being doesn't hurt.

No that's a does hurt if failure occurs, but maybe it helps in the beginning stages of any new course correction to have some hope.

Glad to see you blogging more regularly again, I was worried for a while...

baby trevor's mommy said...

Okay...I'm curious why still no Keto? Are you anti-Keto? Or Dr. Epi?

It's honestly doesn't matter how "mild" a drug may be...I still have a lump in my throat every time we try a new one. Because the bottom line...all of these drugs are scary. Ya know.

But I do think as long as your neuro has a solid agreement to do the testing...even if it requires you reminding him. That makes me feel better. I have to remind our neuro...but she's really good about it. And I understand that as much as she loves Trev...he's not her only patient.


So if Dr. Chugani gives us a "red light" on surgery...we'll be moving forward with Keto. Which is probably why I was wondering about Felbatol.

Jamie said...

Shake your hand and welcome you to the frequent bloodwork club!! Oh the joys! cmon lil guy! lets nab those seizures! Ya know sometimes the big guns are the ones that work! Valproric Acid Club here!