Keeping everyone posted

I know everyone wants to know what's happening with Shawn, and I know how hard the waiting to find out information can be - we are unfortunately in the same boat as information is coming s l o w l y - but we are at least now going forward rather than standing still.

Anyway, I thought a blog would be a good way to record what's happening. Maybe even help keep me sane in the process. (Or maybe not...)

Here's my understanding of where we are to date: Shawn's initial blood test showed a high level of aldosterone. Aldosterone is a hormone that raises blood pressure, so a high level would be consistent with his symptoms. Based on that, his doctor ordered another test to check the level of aldosterone in his urine. This test involved being on a high salt dosage for three days, collecting urine for 24 hours on the third day.

The urine test also showed high levels of aldosterone. Here's where things get confusing: in the meantime, the lab reversed their initial report of the blood test, saying that the aldosterone was not high. At this point, his doctor wants to repeat both tests.

Besides the tests, in general Shawn has been feeling worse and worse. The day of his first doctor appointment (Dec 18) he started to get a headache that he still has. I think it's sometimes better than other times but never really gone. On New Year's Eve, he had stabbing pain every time he moved his eyes - ended up in the ER on New Year's Day where they did a CT scan, reported there was no fluid buildup behind his eyes, and gave him vicodin for the pain. He's trying to take it only when he really can't handle the pain; actually it isn't even helping much but does take the edge off.

So we're now bringing a neurologist into the picture - I'm supposed to be hearing from one today to make an appointment.

So - keep an eye on this blog for the most up to date news. I hope that things will start to move quickly and we'll go from here to an actual diagnosis so we can start talking about how to CURE what he has, (or at the very least TREAT it) rather than worry about what it IS.