Holly’s mom of Holly Daze asked about an update on this topic and it has certainly been a hot topic on the FX related groups on Facebook and also on the listserve so …
In January of 2009 I posted the following (There are some comments to the post worth reading too, click HERE to see the original post and comments):
To minocycline or not.
OK, folks, did you all see this post on Dr. Mike’s blog? We are seriously considering trying minocycline with Monkey. We’re holding up the risk of potential teeth staining to a potential for improving Monkey’s overall quality of life. It’s not normally given to kids under 8 but they’re giving it to kids as young as 3 in the autism trial. Monkey is nearly 5. I’ve asked the head of the FX clinic in Boston his opinion. None of the families in this area have tried it yet according to the clinic though.
I guess I need to talk to our ped. to see if she’d even be willing to consider it…she may not be comfortable with it.
If anyone has a crystal ball that they’d lend to me, I would surely love to borrow it.
It’s now September of 2011 and while I’d still love a crystal ball if you have one to share I now know the outcome for this at least 😀
We did not put Monkey on minocycline. The director of our Fragile X clinic (Dr. Picker, who we love!) was not recommending minocycline at that time. He had been hearing stories of adverse reactions that concerned him and given the fact that there was no scientific proof of any benefit at that time, he was not prescribing it to his patients. We respect Dr. Picker’s opinion, and his caution in recommending medications in general, so we did not pursue it.
There is now a double-blind clinical trial going on at the MIND Institute. We are leaning in favor of the local STX209 trial or another trial that we’re aware of but we are keeping an open mind on the subject. We want what is best for our little Monkey (Duh, right?) and we haven’t eliminated anything yet. We’re really excited about how many options are in the works!
If you’re interested in the double-blind trial at the MIND, it is recruiting, see ClinicalTrials.gov for more details.
Lauren has been on minocycline for about three months now. After about a week there were dramatic improvements in speech and cognitive. Tantrums are more intense, but shorter and less frequent. Anxiety seems to be a lot less, though it did not make the Dr. or Dentist visit any easier.