Clinical trial oppertunity!!!

There really hasn't been too much new "info" since I last posted.  We never heard back about Liam celiac test which generally means he doesn't have it so they didn't feel getting back to me was urgent or he hasn't gotten the results back himself.

We had another neurology appointment in St. Louis last Tuesday and we didn't learn anything new.  He had some blood drawn a few weeks ago for some testing for some conditions they didn't think he had enough clinical symptoms for anyways, and of course they came back normal.  I have suspected for awhile that he has a decreased sensitivity to pain because he doesn't really cry when he gets shots and didn't seem to be bothered by bonking his head as much as a lot of other kids do.  I had told them this before and was told that kids have different tolerances for pain and they kind of brushed it away.  In their defense, I didn't have much evidence on why I thought this other than a hunch.  This time though, they pinched his toes really hard and said that most kids would either be crying or pulling their feet away and he acted as though he thought it was funny.  They said now they agree with me.  They also added that it wasn't that they didn't believe me before, but who knows!

Anyways, the point of this post is about a clinical trial in Washington D.C. I am desperate to get into.  Some trials you can sign up for yourself, but this one requires a physician to refer patients.  There are a lot of symptoms a patient must have but they can be excluded if certain other conditions are there, so I am guessing that only the Dr. can do it so they don't receive a bunch of applicants that they don't want.  As soon as I am finished with this post, I am going to start filling out our portion of the paperwork and send it off.

A simplified explanation:
The purpose of the trial is not to find a treatment or cure, but to see if kids with similar symptoms have a similar MRI, genetic error, or something else similar that can kind of group them together so give a name to a condition.  Basically, we will have free MRI's and blood work.  We may also get genetic testing done that isn't available at an actual dr's office yet.  (genetic tests aren't simple, they have to look at each chromosome and each gene -which there are probably billions of different combo's of- and they have not yet found a way to do this simply.  A lot of genetic tests can only be done through clinical trials, who knew).  It doesn't specifically say when we'd have to go, how long, how many times, etc but in most clinical trials all you have to do is pay for your way there and a place to stay.  This is MUCH cheaper than MRI's and bloodwork, plus then I can tell Liam when he is older that I took him on "vacation" to washington DC, haha.

Even though this trial isn't intended for treatment, if they do identify something this will give them a foundation for more research that can include treatment options.  This specific study is looking at kids who have a delay in myelination and a few other things I can't remember right now and I don't remember what it excludes but I'm not sure I care as long as he qualifies!

Everyone pray he gets in...if you aren't a prayer- cross your fingers, rub your rabbits foot, or whatever it is that you do because we really want this!