I posted before about the minocycline trial running at the UC Davis Mind Institute and how we had been approved for the first leg of clinical trials. The timing ended up not working out with the baby, so the plan was to call after Emma was born to see where they were with the trial. When I fianlly made the call this past week, I found out that unfortunately the funding for the minocycline trial was not renewed. Thankfully, the staff at the FX Clinic at MIND is amazing, and they sent us information to give our pediatrician as well as dosing information to try to get him on it ourselves. They even said they would speak with our pediatrician if she had any questions.
So...now we are awaiting word from our pediatrician about whether or not they will write the prescription for us. I have to say I'm a bit anxious and honestly will probably look for another pediatrician for him should ours decide not to do as we request. We certainly are not a family that likes to use medications unless beneficial, and I have done my research on this. We wouldn't be asking if we weren't sure. I'll keep updating as we hear more, but hopefully we'll get the okay and start seeing some positive benefits of the minocycline soon.
Update: Between writing and publishing this post, we did get the okay from the pediatrician to start on minocycline. We are still awaiting the actual prescription, but I'm so excited it should be soon. She really took time to look up benefits and even suggested we do a B6 supplement to help counter some of the side affects as well. We're going to make sure we're tracking progress, and are so hopeful we may start seeing some benefits soon.