Tuesday, November 4, 2008

The Meds Begin

For months and months, as we visit each of a million new doctors, we have been asked, "What meds does Connor take for SMA?" My answer was always, "Nothing." We've never been given anything and we've never been told to take anything. But each time I was asked that, something (very paranoid) inside me was yelling, "SHOULD I BE?? WHAT DO YOU KNOW THAT I DON'T? ARE OTHER SMA KIDS TAKING SOMETHING? IS THERE SOMETHING OUT THERE THAT CAN HELP HIM THAT HE'S NOT TAKING??"

And the truth is, there is nothing. Nothing that cures this or can take it away from us. Nothing to make the progression stop. Yes, there are some things that some families feel makes it slow down in their kids, but most have yucky side effects that could make some kids worse. That just seems so backwards to the way things should be. There is always something you can do...if you get an infection, you take an antibiotic...if you have a sore throat, you can use that yucky spray...if you get really sick, you go into the hospital and get some major drugs, are maybe hooked up to a machine or two for a few days, and then you start to get better. But my child has this horrible illness that took away his walking and makes him fall all the time with the simplest tasks, and makes me scared to death of the common cold, and will only get worse...and yup, we're taking nothing.

But today, we have something! This morning Connor took his first dose of Carnitor. It is supposed to help him use energy more efficiently. (And judging by the look on his face that is some pretty nasty stuff. I think we'll hide it in some juice tonight.) In four weeks we start the Co Q-10, an over-the-counter supplement that helps the mitochondria in his cells with protein coding blah blah blah biology I don't remember from college.

So, since our life has now become backward, I guess I get a free pass...a free pass to be excited about taking some meds that in the back of my mind I know really aren't doing much...but hooray for SOMETHING!

6 comments:

Megan La Rue said...

I understand what you are saying about being excited for something that seems so small... that doesn't even garuantee abig effect...
I was thrilled and jumped at the chance when we were given the opportunity for the VPA & Carnitine... I just felt like I want to try it seems to help some kids, and I didn't want to think that we may have been missing out on something that offered some hope.. I don't regret it at all... I'm so glad that we made that choice!

I'm wishing you all the best of luck!!

Shannon said...

Yea! I hope that this helps little Conner. I'll be praying for you guys!

Lynnie said...

You're totally on about the "not being able to take anything to get better" feeling - that would be so odd to feel helpless. We're struggling with NAthan right now - something is irritating his skin and he wakes up with big bug bite-looking things each morning. He DOES NOT have bed bugs or fleas and half the time we sleep with him and we don't have the same things happen. He's so miserable and it's hard to watch cause I get frustrated with it and then him. Minor, in your book probably but I feel for you guys. And I'm asking John right now about Dec.

Davis and Carter's Mommy said...

Praying the meds help and have no side effects, also that better and safer drugs are just around the corner.

The Welborn Family said...

Boy, I'm glad SOMEONE remembered their college biology or we would be in big trouble! Just kidding. I'm so glad you have something to grasp onto and I hope it makes Connor feel better. Love ya!

Laura said...

Hi Kristen & Adam :) Just found your blog through another friend and thought I'd say hey. Love your blog, and Connor is just cute as can be. Good luck with the new meds, I hope they help him in some way! Laura(Burnett)Jansson www.wesandlaurajansson.blogspot.com