It's been a while since I posted anything about how the Minocycline was going with Ayden. We started at the end of March and now are mid-July - almost four months in.
I can say with certainty that the mino is definitely helping Ayden, just not in ways we totally expected. In the middle of June, I somehow forgot to give him his medication for an entire week. Over the course of that week we began to notice behaviors emerging that we hadn't seen in a while. It didn't click until I realized exactly how long he'd been without the minocycline and put it together with the emergence of these old behaviors that what we were seeing was related to not taking the medication. Within a couple days of starting the minocycline back up the behaviors again let up. Very good news, and certainly a reason to keep him on!
Other things I've noticed are that he is really doing well with words and small sentences. It's hard for him, he has to really work to produce any sounds deliberately - but he does. And OH is it music to my ears!! So far we can get him to say Mama, Dada, Ball, Birds, Bubble, Bus, and sometimes Car. Outside of those, he spontaneously will say Yeah!, No, and All done (but not when prompted). That's a total of TEN words he can say!! In addition to spoken word, he also has "signs" for yes, no, all-done, please, more, sorry, help, and play. Many of these happening after we started minocycline.
In addition to words, he really is attempting to communicate his wants/needs more to us. He has continually amazed me with showing us and finding new ways to tell us what he wants. We use PECS at home, but when there is not a card for what he wants he can get very creative. He wants to be heard, and not just to get what he wants. You can see him wanting to join in joking more and do things to make others laugh. It's a joy to see his personality emerging even more than it already has.
So, while the mino isn't a miracle drug, it certainly has been helpful for us. I feel like no single therapy or medication will work by itself to help him make advances, but a few of them together. Between school, the work we do at home, and a little help from the mino we really have made huge strides in the past four months.