Thanks to Kathleen Quinn my blog about Caleb’s improvement on the STX 209 trial caught the attention of the editor at baystateparent…and she decided to publish it!
It’s a little different than the original post, apparently their entire readership hasn’t been hanging on my every word over the years and thus needed some background information. Whatevs.
Anyway…check, check, check it out!
SOOOOOOOOOOOOOOOOOOOOOOOOO Awesome/exciting/SQUEE!!!!!!!!!! *so proud*
I can’t read it for some reason! I click on it and I get a blank screen. Any clues:::(
Are you still having issues with flash programs?
No…got that fixed yesterday!
I sent you a .pdf copy 🙂 Not sure why it wouldn’t work otherwise.
Hoping we see some big improvements soon. On open label but I don’t personally see what I thought I was seeing in blind trial which worries me. This article (and I somehow missed your original blog post) makes me feel slightly better and less worried the drug isn’t for him.
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Some people have seen improvements months down the line Ruth!
We were told going into it to allow at least six months on the open label before bailing. I do know that if the Roche trial opens to Liam’s age soon, we are jumping over. I’ve been much more interested in that drug since I first got Liam’s diagnosis in 2010. There are many days Liam seems much more hyper than he ever has which concerns me about this particular drug. He really wasn’t anti social to start with or lethargic ever so this drug seems to pump him up more. 30 was definitely too much and hoping he settles soon at 20 into a good pattern.
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Well done! Great article!
Ruth, have you confirmed that you can jump studies? We were told they won’t let us, they won’t “steal” participants from other trials :-/
We were told going into the STX209 we could move studies because that was my concern. I was not going to start the STX209 if I couldn’t go into the Roche trial eventually which is expected to open up to under 9 later this year, possibly by end of summer. We will have been on the open label of STX 6 months by then I’m sure. My biggest question always was — what if it doesn’t work, we don’t like the effect — will this prevent us from participating in other studies and the answer was no. Suburban Research is an independent research group and is managing studies for Seaside, Roche and Novartis.
Love this! Way to go, Melissa! 🙂
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