Logan Kisamore Update (Baton Rouge, LA)
We will be following up with the children as they titrate off the medication and resume life without it. This is the first update to Logan’s story, see his original story click here: Logan Kisamore.
We are officially done. No more stx-209 to be had in our house. Okay, well, we still have several boxes that have to be sent back but we are done with the titration process.
Just like everything else about Fragile X, no two kids experiences are exactly the same. So it seems with the titration process. Through the entire process, I was very grateful for the stories being shared by families that were slightly ahead of us in the process. It gave me an indication of what to expect.
Since completing the process, I am super happy to say that so far, Logan hasn’t lost any of those oh so precious words. He has even gained a few new ones and even gotten clearer on the ones he had. The biggest differences we see are the sudden, unexplained meltdowns. Don’t get me wrong, we still experienced meltdowns while on the extension, but these are just different. They come out of no where, and the only thing he wants is to hide his head in my chest or leg or whatever body part he can find at the moment, and cry. He gets mad if you try to ignore him, gets mad if you ask him whats wrong so all you can do is just hug him and console him. His dad will try to console him but he pushes him away and gets visibly more upset and agitated until I come into the room.
Its truly heartbreaking because as his mom, I want to take away any pain or discomfort and I thought I was doing that when we found stx-209.
One thing he does have in common with other Fx-ers is his sleep patterns. STILL waiting on him to start sleeping through the night on a regular basis but I have become accustomed to it (if that is at all possible) as well as the getting up at the crack of dawn. But since he has come off of the study drug, it has been worse. He is going to bed later and later, tossing and turning all night (I usually end up next to him for the majority of the night) and just generally not getting a sound good sleep. THAT is the part affecting my husband and I more than even the meltdowns. Its like having a newborn again.
He seems to be slightly more defiant than he was prior. Whether its him practicing his independence or his is just overwhelmed by the task, its difficult to say.
We are also noticing his unwillingness to leave the house again. He has always been a home-body (“home” is one of his favorite, most clear words) but since the titration process began, we find it increasingly difficult to even get him outside to play, much less leave the house. We have had difficulties the last couple of days getting him to go to his camp this summer, a place he loves. This morning in fact, after battling with him to get him dressed, I found myself muttering under my breath that for a brief moment, I regretted ever even hearing about stx-209 and wish I had never started the journey. After much negotiation, I finally got him to his camp and when he saw his favorite counselors, he turned to me and said “bye”. He walked to the opposite side of the room, to enter a circle of boys that were sitting on the benches. They greeted him with “Hi Logan” and he sat down with them. They were eagerly gathered around him to witness what exciting goodies he would pull out of his booksack to make his trip to camp smoother and easier (a stuffed pig, 2 WWE wrestling belts, a magazine, a string and a stuffed Kung Fu Panda-hey, he has MAD negotiating skills). One of the boys asked him for a high-five and to my surprise and delight he responded. He looked across the room to me and once again waved and told me “bye”. As I closed the door, leaving a happy boy this morning, I realized that I was so very thankful for stx-209 for opening the door to this beautiful world for him and I realized that I was willing to do anything to keep it from closing. I realized in that moment, that it was time for us to start searching for a new trial to begin a new journey. This whole experience, while it has made me a little wary, has not wavered by belief in the importance of medical research especially in the field of Fragile X.
So, for now, we seem to be doing okay but it could all change at the drop of a hat. One of the lessons that Fragile X has taught me, is to never take a minute, a hug, a smile, or a word for granted. I will treasure the moments I have with him today and hope for the best for tomorrow and the strength to make it through. I know we have the support of other FX families across the globe and that makes it that much easier.