29 November 2010

Follow up to the neurology appointment

I left off the last neuro post saying that the neurologist wasn't keen on stem cells. I mean, he wasn't even interested in them at all! I brought up stem cells and he almost laughed it off as a scam! I was really shocked about it because this was a neurologist at Chapel Hill. A reputable institution. Duke is right down the road and they are already doing stem cells for kids with cp if they have banked their own cord blood. It's not like stem cells is a stretch of the imagination or something...it's happening! It's been happening for years.

The neuro said that stem cells were a waste of money and that Duke was going to be getting into trouble with it. Huh? My heart plummeted because I knew I wasn't going to be getting any useful information out of this Dr. I knew asking him about hbot wasn't going to go over well either so I just straight out told him that we had done it before he could say anything negative. I also told him that our son was using his arms for the first time ever after our last round and that we had seen great improvements in Liam. He really skirted around the hbot topic and didn't say much of anything about it.

We quickly got on the topic of the new medication, sinimet, and that was how we ended our visit.

Here's how detached this appointment was: the Dr didn't even tell us when to come back for a follow up. He puts my little boy on a new drug that actually crosses the blood brain barrier and he doesn't need a specific follow up? Not only that, but I read in the RX information today that you just can't stop this medication once you start it. They have to be weaned off. Well, heck if I knew that! He never said a word about it.

I was trying to not have any defined expectations about meeting this Dr.

I am really saddened by the two neurologists we have met. They have been so closed minded to options that aren't being paid for by insurance and medicaid. You have parents saying that these things are working and helping their kids and we have Dr's who just won't listen. Or just don't care. And I just can't figure out why.

**eta: He said that kids like Liam would never walk or talk and if he had some of his good grey matter left we might be able to get Liam to communicate with some device. Yeah, that's how little he got to know Liam in that appointment.
post signature