Saturday, October 22, 2011

PWS Registry and Tent Living

Awhile ago, I posted asking for your votes for a PWS video to win a contest for a $50K medical registry. This is amazing because, with a rare disorder like PWS, data is scarce and precious, and now it can all be in one place. The registry, designed by RemedyMD, will be able to recognize trends and patterns in the data and hopefully lead us towards new treatments and maybe, a cure. Who knows?! Here's a great article talking about how the registry will function for FPWR:

The other night, we rigged up an oxygen tent of sorts. Dean's pulmonologist from Charlottesville said that they don't "do" oxygen tents anymore, but I have no clue why. So we took some pop-up tents, ditched Dean's crib (sniff sniff) in favor of an air mattress, and came up with this:

Yes, those are his feet sticking out. lol Dean was totally out and I just placed the tent over him. It worked, for the most part. He desated once earlier in the night when there was probably not much built up in there, and then that was it for the night. So if this works, it means we can ALL sleep. Which would be marvelous. It's amazing how much better the world seems when you get a decent amount of sleep.

Of course, Cole thought the tent idea was genius and wanted his own, so he is asleep in another tent on his bed. I had it ready to show you until my MacBook died (officially) about halfway through this post. So the image is in computer heaven somewhere.

Anyway, the jury is out on whether it's helping or not. Dean only desated once the first night we tried it, but then three times last night. The theory is that while the oxygen is near his face, it's preventing him from deserting more. But really, since we're not doing a control Dean and an experimental Dean, we don't know that for sure it's helping him. Anyone have ideas on how we can make sure that the oxygen is concentrating enough in the tent without overdoing it? Still tweaking the system....

1 comment:

Nancy said...

So glad to hear about the prospect of a registry for PWS! My daughter has cystic fibrosis and the CF registry database has helped so much in understanding the condition and developing better treatments!