Thursday, October 6, 2011

Minocycline Trial

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We received a nice call a few weeks ago asking to enter Ayden into a clinical trial at the Mind Institute.  It turned out that he actually surpassed the age limit on the trial between sign-up and when they would be actually doing the testing, so we couldn't get him into that specific trial.  It is all seeming to work out though, as the same person was running that trial as is running the upcoming Minocycline trial!  She was very kind, and informed me that Ayden would for sure get into the Minocycline trial, to which enrollment would be happening mid-October. 

What does this mean for us?  Most importantly, Ayden will be seen at the Mind Institute and have a visit with Dr Hagerman.  For those reading that haven't heard of Dr Hagerman...she's basically the leading expert in the world on Fragile X.  (No, you did not read that incorrectly - I did say world).  Of course, this would also put Ayden on Mino, which is something Mr Awesome and I are actually hoping will help him out a decent amount. 

The tricky part to all of this?  We have to either fit in a visit to California before the end of the year, or wait until after the baby comes and go after that.  I think waiting will more than likely be the most beneficial, especially as we should have the baby tested by that point in time, but much will depend on what they want to do at the Mind Institute.


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