It's been a few days now since the 'termination heard round the fx world', and while the unknown of where Ayden will stand once we start weaning him from arbaclofen is still haunting me I at least feel like I have a path, a purpose in all this.
We still have not received our exact date to start weaning. I know we will hear soon, and am hoping we are able to push that date out to at the very earliest after my sister in laws wedding but hopefully we can push it to when school lets out. You may remember our titration in the blind portion of the study...[ Do I really have to do this again?! ] It was, unpleasant to say the least.
I have no expectations that this extension will be saved before we have to wean from arbaclofen. Myself and many, many others in the fragile x community are doing everything we can to try not to let that happen, but realistically I'm preparing for not seeing our miracle. You can rest assured that regardless, I will not give up hope or stop working tirelessly writing letters, contacting the media, or raising awareness ANYWHERE else. We may have to say goodbye to this drug for a short time, but whatever it takes to get it on the market and/or back into our hands is what I will do.
We briefly spoke with our study coordinator and have decided that when we do begin weaning we will start on racemic baclofen as well. This drug is already FDA approved and been on the market for quite some time. It contains both arbaclofen and esbaclofen (so, essentially a less potent arbaclofen then what Ayden is currently on) and we are hoping that this will still work for Ayden, at least a little bit. Some of the families I know who have had arbaclofen working for them have not had any success with baclofen. I guess we will see. The plan is to start the baclofen during titration to hopefully minimize the affects of weaning. After that...well, we'll go from there. We have a couple paths we can try, although none are as promising for us as arbaclofen was. I've researched each of them, but we won't begin to make that decision until we see how or if the baclofen works.
Again, on a more personal note. I'm still utterly devastated over this. I really want to believe that whatever happens is for a reason. (as cliche as that sounds) I'm just having a difficult time. It's hard to watch Ayden being just so chatty and funny and to think that part of him may be shut off. Every fiber of my being is hoping and praying that these changes will be lasting, I'm just so so so afraid they won't be, that we will see regression. That he will stop calling my name when he needs me, or pretending to be a zombie saying "BRRRAAIIINS" and then eat my brains and go "NOMNOMNOMNOMNOM". That he will stop enjoying coloring or playing Mario Kart. Even today, he started saying something new ("Oh, no!") and said "no, mommy!" when he didn't want me to do something. These small moments that show his sense of humor or how much he loves us are times I hold so close to my heart. It aches to think I may not see them as much, or at all.
Thank you so much to our family and friends for the love and support you have shown us this week. It's still not easy for me to talk about this in person, and I appreciate the quick texts or notes to let me know we are not alone in this. You've done your part as much as we're doing ours here on the front lines, and it IS appreciated. We WILL make it through this, our family is strong and we've been through much more trying times. We will find something that works for Ayden, even if it does come with heartache along the way. Above all, Ayden is a strong, resilient little boy and HE will continue to rise above every expectation we have for him as he always has done (even before arbaclofen).
Please be sure to check out "An Open Letter to the FX Community" from the NFXF and pay close attention to the FAQ section. The NFXF has put together an amazing informational page to make sure factual, accurate information is available to families.