And so it begins

Today was the first official day of titration off of the stx-209. Today was especially hard for so many reasons. Since we are officially lowering it now, it seems so much more real. Don’t get me wrong. What we felt when we first found out about Seaside cancelling the extension, it was very real. The sinking in my stomach, the aching in my heart, very real. But we were still administering the medication like before, life was going on just like it had for the past year and a half. Until today. Logan was just slightly “off” today. Its difficult to pinpoint whats going on with your non-verbal child because they can only help you so far. You get very talented at distinguishing moans and grunts and just the look they give you. We went along with our morning. He didn’t even give me any static about going to see his neurologist today. While we were standing at the desk, I looked over at him and he just looked different, he looked not like himself. I asked him if he felt okay, and didn’t really get a response so I just shook it off as my paranoia.

logan

We go home and everything is fine and then out of nowhere, he comes into the den and throws everything in his hands down, looks at me, hits himself in the head and forms fists with both of his hands. I ask him what happened because usually its triggered by the drain of the ipod battery, or his tv went off or something but he just got worse when I asked. He turned and stomped off to his bedroom, closing his door. I sit and wait and he comes back out. Instant replay. This little dance goes on for an hour or so with him getting angry with me if I speak to him, and angry if I don’t. Finally, I decide enough and go into his room and he tries to push me away. I just put my arms around him and start rubbing his back and scratching his arm and I can feel all the frustration melt away. We stay like that for about half an hour. I ask him if he wants me to go or stay. He pats the bed so I stay. I stay for awhile, and then when I think he is done, I leave the room because he tells me he is better. All I can think is whether or not the incident was brought on by the fact that his dad has been home on vacation all week, or the fact that school has been out for a week, or one set of his grandparents are out of town for the week, or….is it the lower dose ALREADY having an effect?

A little while, it starts back up again and it hits me. It could very well be the lower dose already taking affect. As I go back into his room, and put my arms around him, all I can do is cry and tell him how sorry I am. I am sorry for giving him this stupid defective gene. I am sorry that he isn’t like most other 9 year old boys. I am sorry that just as he thinks his world is opening up, its going to shut right back down again. In that moment, I was even sorry for ever getting him into the study in the first place.

I know, I know. I didn’t know about Fragile X when I had him. I had no way of knowing that the study drug that would work wonders for us, would be taken away because a large pharmaceutical company decided that it wasn’t worth the investment to help out a smaller company. I know I was just trying to give him a better life. I know that I am STILL trying to do that by helping to fight to keep our extension. I know all that. I also thought to myself that I didn’t see how I could possibly put him through it again, EVER. In that moment right there as I could feel how frustrated my sweet boy was, I just wanted to take it all away. It probably didn’t help that I had to leave for work and couldn’t stay to help him sort it out, to help my husband deal with it, and to help explain it a little more to Victoria.

My husband called me later to tell me that he had calmed down and had even laughed and eaten a good dinner. He also called to tell me the UC Davis had called about another research opportunity. I guess when one door closes, another one opens.

A friend of mine today, said that they should have issued some precription strength tranquilizers for the parents to take along with the titration kits and I believe she was right. This is going to be a long, bumpy road and its only supposed to last 14 days from today. I am not sure how we will surface on the other side of this but I do know we will. I know that we are not alone and I have gotten closer to some pretty incredible ladies over the last couple of weeks that keep reminding me of that.

New beginnings. whether I like it or not

515 days (give or take, so sue me, I suck at math, blame FX) have passed since I posted about how excited we were after just one day on Stx-209.  Then, we weren’t even sure what, if anything, Logan was getting but come January, when we began titrating down off the “study” drug, it became quickly evident that he was getting something.

“Titrating” , since May 15, that word has been used at least once a day in my house.  I can’t give you the Websters definition, but in layman’s terms it is the process we are using to wean Logan off of Stx-209, for what we can only assume is for good.

Just 515 days ago, I was so full of hope.  So much promise I had put into this little white pill.  I thought it would change our world, it did.  I thought it would open up my sons world to new possibilities, it did.  Never did I think it would break my heart, but it did.  Even up until May 14, I attributed most of Logan’s new-found successes to Stx-209.  Anyone who knew me, could see how much Logan had grown on it.  I spoke of it daily, I called the newspaper and bragged about it.  It’s hard to say how much was truly just him growing up, or all of the measures we had put into place, or the pill but it was hard to deny something was different.  My 10-year-old niece sat on the couch next to Logan one day, holding his hand, and says “He’s different now.  He’s just different, he plays with me”. I knew then, I had made the right decision to allow him to participate in a drug study.

Wrong or not, I, like so many other families, had put so much hope, probably too much hope, in that little pill.  Never in a million years, did we imagine getting a phone call that said, um, well, we ran out of money, so, no more for you. Thank you, and have a nice day.

I am angry, I am hurt, I am heartbroken not just for me but for all the families that are affected by this. I am hurt for my niece who has this new side of her cousin.  I am hurt for his sister, who now plays with her brother.   I am hurt for the kids in Logan’s class who are now his friends.  I want to scream from the rooftops: it’s already not fair that Logan isn’t like other kids and struggles with so many simple things, to have what we thought, what we hoped, was something that would help make his future a little brighter taken away, just like that.

Just like I did after we got our initial diagnosis, I realized I couldn’t just sit by idly and just let it happen without a fight.  Blame it on being born in Missouri, but I need the “why” and I need to fight back.  I contact the press, use any connections I can find, to make a stink, tell our story.  It may do some good, and it may not but at least I will have tried.  At least by not going away quietly, a few more people are aware of Fragile X.

We started our titration (see 3 times here already!) yesterday, and I am scared yet ready to get it over with. Scared to death because I don’t know whats going to happen.  Will the meltdowns, the REALLY bad ones, come back? Will we lose those oh so precious words we have gained over the last 500 days? Will his friends notice a different Logan when he goes back to school in the fall? Only the Almighty knows the answer so I have to trust in Him.  Some people have asked, and I know other FX families are in the same boat, as to whether or not we will search for another study to participate in.  I just don’t know.  It’s a HUGE decision to subject your child, your flesh and blood, to be a guinea pig. Did I feel some guilt over it? Absolutely!! I am a huge believer in research and I believe that one day, we will have something that will help Logan and all of our other FX families, have the life they deserve.  But, based on my experiences of my past, I have a difficult time putting my trust in someone who has wronged me before.  Am I sorry for doing? Nope not at all.

So, I think for now, we will slowly wean off of the stx-209 and see how it goes.  But I did have to laugh to myself when I got the mail today only to find a letter about a language study being done that is looking for participants.  Our very first venture into the research field was in a language study.  So yeah, it is sort of like a new beginning.  One that I believe, I have to believe, will have a happier ending.  This warrior mama will NOT let Fragile X win this war!