Thursday, June 13, 2013

STX209 Weaning Update, and Schedules

We are one week into the weaning process now.  It's been okay.  Not terrific, but not horrific.  There is more anxiety, certainly.  Zack screams a whole lot more, and has huge overreactions to not getting his way for every single little thing.  I walk on eggshells around him somewhat.  The last couple of days, AJ has to whine and cry for around an hour at lunchtime, for sometimes an indiscernible reason.  One day it was because I made him put his shoes away.  The next, who knows?  Things just in general don't always go his way.

Is it more anxiety than they'd have had right now anyway - with the start of summer and the changing of our schedule?  I don't guess there's any way to know that.  We'll just keep plugging along, day to day, I guess, and maybe try something else for anxiety when they are off the Arbaclofen completely.  I'm not sure what else to do.  Social media is full of people working to get funding reinstated so that we can go back on Arbaclofen, which is wonderful and inspiring, but now that it's summer, I have a lot less time to focus on what people are doing on the internet.  I'm just trying to figure out how we go on from here.

But I try to keep up.

Our study doctor in Chicago recently made a statement that was published on the National Fragile X Foundation website.  She said in part:

"......Yet it’s almost impossible to get it right the first time in new science ground like this, and even tougher because the FDA and commercial interests do not want to let us have six tries to find the right way to do the experiment and get a reproducible result like we would in the lab. So we are going to have growing pains. We can’t have real targeted treatments for fragile X syndrome that will improve lives more than current supportive treatments without doing science that’s totally new and going where no clinician, researcher, or the FDA has gone before."

- See more at:

As I understand this, she basically says that the way drug trials are done currently - the FDA standards that researchers must meet - is a roadblock to getting these new drugs approved and on the market. 

Of all the people I've met through this diagnosis in the past seven years -- all the brilliant, inspiring, educated, imaginative, and forward thinking people I've met - I look to Dr. Berry Kravis for words of wisdom, advice, and guidance the most.  And while I appreciate her statement, she didn't answer the question I'd like to ask her.  Namely, does SHE THINK Arbaclofen is responsible for all the progress people are seeing in their kids?  I don't know if she can answer that at all, much less with a straight "yes" or "no."

One of the comments on her post is really interesting, too.  It's by a Dr. Pat Robinson.  No idea who that is.  But he says:

"I fault the designers of the study for not using specific and objective data to measure outcomes. If they had, they might have had a way to measure the changes families observed in a way that would have led to a positive result."

This does seem to be the problem - if the study had been looking at the right things, it would have been successful.  That's why we can't answer the question.

Is there anything that can be done about that, now?  Another study?  More research?  I don't know, but I do know that whatever they might do, drug companies need to be convinced to put money toward it.

An open letter to Dr. Severin Schwan of Roche Pharmaceuticals, is published here, and you can sign it at the bottom to show your support.  Costs you nothing.  Please do it.  Please support us in this very simple way.

Speaking of schedules, I'm working on one for us.  A very, very simple one.  Just a basic description of what we are going to do for that day.  I've had trouble getting a schedule together for the boys for years now, even though every Fragile X expert and parent will tell you, having a visual schedule helps leaps and bounds toward reducing anxiety and increasing happiness and cooperation in our kids.  It's just -

Schedules are so much work, and there's so much pressure to keep it up every single day, and there's so many different ways you can do it - you can time the events, or break them down into an infinite number of details, and should I do separate schedules or one for both boys together,  and should I do a paper one or do it on the iPad, and what if we break the schedule and do something that isn't on it, and if I do a paper one, the boys will probably take the little picture cards and destroy or lose them and I'll constantly be having to make more, which will take time, and MORE Velcro, and MORE cardstock, and MORE ink for the printer, and create even MORE mess and crap around the house for me to clean up, and people expect to get home-cooked meals around here and everyone wants something different, and I've got 5 people's worth of laundry to do, and I have to get the journals for the drug trial caught up before I can send all that stuff back, and the boys need lots of sensory breaks throughout the day and to be potty trained (which, if I'm going to do that right, throw absolutely everything else I do, ever, right out the window), and I really should try to get them away from the TV and iPads more .....

Suffice it to say, I'm a little overwhelmed here.

So I'm doing a very stripped down schedule.  Five or Six cards representing what our day will look like.  All of us.  Together.  If I can't find a picture to represent something, I'm using words, because they can read.  One card I just made says "Grandma coming over" because I can't find a picture of her right this minute.  Done.

Oh, I also don't edit or proofread blog posts anymore.  What you see is what you get.

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