9.16.2009

Doctor's Visit

Yesterday we saw our DAN doctor for the first time since May. Appointments had to be cancelled and rescheduled, etc...so, it's been a while. The doctor said "he has a lot of potential, and great emerging skills, but we also need to become more aggressive in his treatment because he's 4 and a half now." We're going to do an IV on Friday. EDTA + DMPS challenge test. Then 2 weeks later, another challenge test with suppositories (EDTA+DMPS). In the meantime, we'll also check his urine for yeast.

But,

That statement - the one about him being 4.5 now? Hit me like a ton of bricks. I can't get it out of my mind. He's FOUR AND A HALF. Almost 5. 2 and a half years ago, I thought that by now, he would at the very least...be talking. As in, having a conversation with me. He's not.

He's made progress, yes. And I'm very thankful for that. But, today? I'm hanging onto hope by a thread. And all the smaller threads that make up that 1 thread - peeling away 1 by 1. So, in reality, I'm hanging on to hope by less than a thread.

1 comment:

Debby said...

Hi Rhonda

We have a little girl (2.5) on the spectrum. It's amazing how often I read about accomplishments of ASD kids and it is so inspiring and moving to read about Holden. I know how impressive his accomplishments are--because I can truly identify with the troubling behavior and then the "lucid" moments that give us hope. I wanted to mention some things that I have seen come up a lot in the ASD support groups I'm in: the chelation is said to work better in small, steady doses or rounds(i.e. every 3-4 hours for 3-4 days, then off 3-4 days) because the mobilized heavy metals get excreted that way instead of redistributed through the body. I have also heard the challenge test rejected as dangerous because a high level of Hg can be mobilized (and possibly redistributed to the brain). Have you had any experience with a low dose chelation approach such as the Andy Cutler protocol? I have heard conflicting opinions about ABA, as some feel it can be harsh, but I am curious about how it has worked for families and what their experience was.