Closing this Chapter

We sent it all back today.  Six boxes, three still unused.  Two dosing diarys and a two page explanation of what we saw over the past two weeks including behavior charts. Fed Ex came and picked up the package.  Ayden told me no as I handed the box he had watched me pack up to the delivery person.  He then had a full blown meltdown after he left.  All I could do was hold him and cry with him.  Once he recovered...

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We're Done

Today I gave Ayden his last dose of STX209.I've held my head high though all this.  I've done everything I can, extended every favor I had.  And today, it feels like none of it matters. We will weather this storm.We will find something elese that works.I will continue to fight.But today, today I cry.  I cry for the hope that we had with this medication.  I cry for the look on Ayden's face as he tells me he doesn't want the new medication.  I cry because I can't explain why so he could understand.  I...

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Titration Week 1

Day 9 I don't want to write about this. I don't want to think about it. Yet I feel I need to. Full disclosure though:  It's not as bad as I thought it would be. It isn't good though either. Ayden was on 20mg of the study drug, taken in two doses of 10mg each.  On June 9 we began titration and he dropped to 10mg of the study drug taken in 5mg doses twice a day.  At that time, we also added in 20mg of baclofen taken in 10mg doses twice per day. Day 1 was really bad.  We had our first major meltdown...

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Why This All Matters

There are those moments in life where it feels like a band aid has been ripped away and an open wound left exposed.  Those moments make me stop and wonder how I couldn't have realized what was under that band aid in the first place.  The ending of the STX209 trial was exactly like that for me in many ways. I work tirelessly to be sure that my children have the best lives they can.  For Ayden, that work is just...more....

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An Open Letter Regarding STX209 to Dr. Severin Schwan, Roche Pharmaceuticals

For almost two weeks now I have been part of a group of women helping to share stories of others that have benefited from STX209 as Ayden has.  This group of amazing, dedicated women has worked tirelessly to share each of these stories.  Stories of how their lives were changed, how their child's life was made so much easier.   We have shared to help bring these stories of hope to the eyes and ears of those who can help us the best.   We have asked, begged, and pleaded for you to do the same.  Together...

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The Good and Not-So-Good

I have tons to share, but today just want to do a brief update.  We just returned home from a wedding that all three of the kids were in (for their aunt) and I didn't get to post a couple things I want to be sure get some attention.Friday, something big happened.  REALLY BIG. New York Times BIG.http://www.nytimes.com/2013/06/07/business/an-experimental-drugs-bitter-end.html?pagewanted=all&_r=1&I was interviewed a few weeks ago by a reporter for the New York Times about the end of the arbaclofen (STX209) trial....

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Fragile X and Autism Families for STX209

Been working on something....I've been working with an amazing group of women, other fragile x parents.  We're hoping it will be big.  We need it to be big. You can help by reading our stories on Facebook.  Liking them.  SHARING them.  Each person that shares  one of our children's stories radiates those stories to their entire group of friends.  Who in turn share.  Which makes our prescence much bigger.  So please, won't you help? Visit this facebook page:  http://goo.gl/RAUGj(Did...

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