This past Saturday the Fragile X Society of Connecticut hosted a conference at the University of Connecticut Health Center. We left Monkey with my parents in Maine and made the trek down there with high expectations. It was fantastic! So fantastic that I can honestly say it was worth having to get up at 5 AM.
The presentations were…nerve wracking and inspiring. Nerve wracking because I don’t like to think about FXTAS and I don’t like to think about the challenges Monkey will face as an adult. Inspiring because of all the amazing research going on.
I’ve been such a good little ostrich regarding FXTAS, I really and truly did not want to know anything. This was a pretty good wake up call. My husband kept elbowing me and staring at me as Dr. Hagerman listed off ways to protect yourself. If taking vitamins, getting exercise and reducing stress will keep me around and functioning longer for my husband and my son…well, I’d be stupid not to make the effort. *Sigh* I hate exercising.
We are going to add l-acetyl carnitine to our current supplements (folic acid, multi-vitamin and Coromega.) We’re also going to pay closer attention to our antioxidant intake. We get some now from foods but I don’t know how much. Probably not enough so I see raisins in Monkey’s future. Poor kid, how awful 🙂
Dr. Hagerman touched on minocycline as well. She showed slides of the sort of tooth staining that is a potential side effect and showed porcelain caps. It seemed like a not so subtle nudge that HELLO this might really help your kids and the potential side effects are easily fixed! Now to see if we can get a prescription. Monkey doesn’t have acne. It would protect him from Lyme Disease which is, obviously, a concern in our neighborhood. I wonder if that would fly. Prophylactic antibiotics? Sounds iffy, even if we get the prescription I’m thinking the insurance company won’t pay so it would be out of pocket. I’ve seen estimates of $40-$170/month.
THEN of course she discussed baclofen. They’ve lowered the minimum age (except in Boston and NY) to participate in the trials to age 6. Eight months away. We should see some results published by then *fingers crossed*
While we were there two people mentioned that they’d read the blog so *HI!* Duhdee made fun of me and made a crack about me being a “rock star.” But then we saw a real rock star…
Yes, ladies and gentlemen, Dee Snider was in the house! Woot! Duhdee has no idea who he is BTW. He makes me feel old sometimes.
See, totally worth a 5 AM wake up!