Yesterday was Puppy's Second Visit to the Mind institute. New research has indicated that a drug called minocycline may have a positive effect on Fragile X. Dr. Hagerman proposed a 1 month trial with Pup.
Basically Puppy had a clinical visit, then met with the baby Research team, for several eye tracking tests. He also performed the Mullins and Vineland Assessments to give us a baseline of development. Puppy would then take the medication for 4 weeks and repeat the tests.
In the Fragile X Knockout Mice, the positive effects were seen over 8 months later. Side effects could include a graying of his teeth, but it was likely that his adult teeth would not begin to calcify until he was 6 months old, so this was the perfect window of opportunity.
Pup is the 2nd baby to try this. The first is a girl and I've been in contact with her mother who helped me in telling me how to administer the drug so Pup will take it. We talked about our concerns and how we were the first moms ever to have to do this. But we realize that whatever we do is out of love. I was very concerned about the fact that minocycline is not given to infants typically, but I was assured that it could only help. Tonight was the first night of administering the med. I fed him at about 7:00ish and then gave him the medication at around 8. I mixed it with apple juice and a bit of sugar and gave it to him with a medicine dropper. I think he got it in his mouth although there was a bit of spitting out. At least he took it. In fact he kind of lapped it up. Perhaps I made it too sweet! I immediately calle d Holly's mom (the other baby) to find out how she stored the rest of the capsule. We had a nice chat.
As part of the study, I was asked to keep a daily journal, which I will be posting here.
