Thursday, March 19, 2015

1st Dose

Today was the first day of a 4 week drug trial.  We will be told at the end of the four weeks if our son, TsukiMoon  got a placebo or medicine.  If we recieve just the saline we will have the option to take the real thing for an additional 4 weeks.  Either way we will know if this medicine has any effects on our son's ASD.

Our son was a trooper today.  He had is blood pressure (BP) 4 times, had an EKG, and was shot up the nose with a "magical-mystery (MM)" vapor 6 times-- 3 times per nostril, also another check of his IQ.  While he was busy doing all that, I have homework of my own, answering 3 surveys of TsukiMoon's behavior over the last week.

His BP didn't change from the first; sitting and standing time, to the second--after he received the MM vapor.  From a quick search of the internet the drug can effect BP, raising it.  This doesn't mean that what we received was a placebo, but it indicates that it might be.

I don't know what I think about the whole thing about the drugs, changing the attributes of ASD kids.  Since living with the "new normal" I have become more grateful for everything.  What is true, is that we are lucky to have this opportunity to be part of this study.  It will be short lived and might bring the hope to people who really need and want it.  

I wouldn't be doing all the things written about in this blog, if I didn't think that there wasn't a way out of this.  A solution for TsukiMoon's  a life where he can be happy.  My husband and I work on this daily.  ASD has made; me, our family, and even our TsukiMoon better people.  We all live with a level of empathy that I, simply have never felt before.  TsukiMoon mimics our caring behavior for people.  If he was a "normal" boy we wouldn't have worked so hard for this.  We all are better at being able to forgive everyone everything.  Life is better.

It will be great if this trial leads to a safe, new medicine for people who want it and need it.  If it doesn't, for us, we will get through.

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