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!
Hi,
We are the Fragile X Society of Connecticut and would love to talk to you. We are glad that you had a great time on Saturday.
Please contact us. xfamily@aol.com
Thanks.
Tammy and Andy
Wow! I was overwhelmed just reading the entry. I’ll have to check out the supplements you mentioned. We only have Ian on folic acid….thanks to you. We love what we’re seeing, and if it’s not actually the folic acid, well too bad, not willing to stop to find out!
That’s just it, who knows if it’s helping in ways that we can see or if they’re just maturing but it absolutely isn’t hurting!
I read your block everyday but not put any comment. Thanks for these information. Your block is very helpful. My son is on Folic Acid but not with other things. I will make sure we add other suppliment to help him.
Hi Umma,
It was great meeting you and Duhdee in person. I had to google Dee Snider too. I was wondering why people were talking about twisted sister. Was he at the conference or just at the hospital? On the supplements, does Monkey take pills? How do you get them in him?
It was good meeting you too! According to his website, he rides for Bikers for Babies…there was a fundraiser nearby. It looked like he was just doing publicity shots out front. I wish I’d invited him in though!
We can’t do pills yet, Monkey chews everything! The folic acid is a liquid (we had to get a prescription and Skendarian Apothecary mixes it for us), the multi-vitamins are gummy bears (Monkey will never know that they aren’t real if I can help it!) and the Coromega is a pudding texture. We went with the Orange flavor, it’s not bad…Monkey likes it though I think it’s a bit tart.
We found MRM l-acetyl carnitine on Amazon in a liquid format. All the l-acetyl carnitine formulas have massive amounts, we don’t want the body builder dose! Based on the amounts they were using in the study we’ll give him 1.5 ml twice a day and watch for any side effects.
When we were giving him melatonin we used pills. I’d crush them up into a powder and mix them with a little juice in a medicine syringe. One squirt and down the hatch it went!
SWEET!!! Sounds like a fantastic time and very informative.
And how does Duh-dee not know who Dee is! My teens even know all about Dee Snyder. Sad duhdee…just sad…lol
I recognized him… but would have never been able to put a name with his face… I wasn’t a big fan of 80s music.