Saturday, January 30, 2010


How does a parent get to the point that she not only signs a document giving permission to inject her child with botulism, but is prepared to beg for it to happen if someone tries to prevent it?

How does that happen?

I would never knowingly and willingly allow my children to eat something I know will be poisonous to their bodies. I try hard in the kitchen to protect them from such things as I cook in my own kitchen.

And yet…do something for me for a second.

Sit up. Lift up your shoulders almost to your ears. Now keep them high and rotate your shoulders forward so your back is nice and round. Great. Now keep them there for 2 whole minutes.

I’ll wait for you.

Perfect! No! Don’t drop them. Keep them up. Yeah, keep them there for…hmmm…how about for one year. How about for 4 years?

What? You don’t want to do that? No, I guess you wouldn’t want to do that. Neither does Miles. That’s how a parent agrees and is willing to beg for their child to be injected all over their body with botulism in hopes that their child will be able to have a neck and relax their shoulders.

I like how Lisa Girion of the Los Angeles Times explains what Botox does for kids with cerebral palsy. She wrote, “Botox, best known as a face-lift-in-a-syringe, can relax contorted muscles and sometimes help young patients walk without surgeries.” Now in Miles’ case he’s still had to have surgeries for his contorted muscles. Also, instead of doing it so he can walk, we’re just trying to keep those shoulders away from his ears so he doesn’t pull them out of socket like he did his hip.

Thursday I drove to Ft. Worth for his Botox injections. He hasn’t had them in over a year because he had surgery to have a Baclofen Pump placed in his body. The pump has a catheter going into his spine which pumps medicine throughout his body to help with his tight muscles. The pump works great for his lower half of his body. The lower half used to be the worst half, but now it’s in great shape since the pump. I’m very grateful for it, but it doesn’t work for his whole body.

After about a year of his upper half getting worse and worse I had the bright idea of asking the doctor if we could still continue with the Botox injections even though he has a pump. The doctor said yes. I thought it was an either/or thing. I thought we were done with Botox when he got the pump. I was wrong.

Thursday when the doctor saw Miles he injected the top half of Miles’ body like it was the oil can for the Tin Man. He got about 5 injections on each arm. He got injections on his elbows, hands, pecks, back and around his neck.

It starts working in about 3 days. It peaks in 3 weeks, and last for 3 months. Today was the 3rd day. When I went to get Miles out of bed this morning he was laying in bed with his arm straight up in the air. His arms have been locked down for about a year now. All day he’s been moving his arm and it freaks me out a little because I’m not used to him moving like that.

Miles has received Botox several times in the last few years. This last time I had to sign a new form that explained that the FDA is not sure that Botox really works when used to treat children with Cerebral Palsy and Dystonia. I would like to invite the FDA to come hang out for awhile and watch Miles with and without the Botox to see if it works well or not.

Or maybe they would like to sit with their shoulders high and rotated for about a year. No, I don’t think they would like to do that.

Seeing Miles with his arms up and moving today…that’s how a parent can agree to let their child be injected with botulism.