Chelsea's Sleep Study Update

Well, I gues it's good and bad news. I'm not really sure ... I tried to write down everything I was told, so here it goes. I'd really like to hear if anyone has had similar results come of a sleep study? I know a lot of kids w/ Ds are really restless sleepers ... I told you how bad it was!

They're not recommending a tonsillectomy right now. There was no evidence of obstructive sleep apnea. They did however go into detail about her limb movement. We knew this was crazy. They said she had very little sleep in the delta stage which is the stage responsible for feeling refreshed in the morning, and she has periodic limb movement disorder.

She had a lot of the two kinds of limb movements, random and clusters. She told me it has a large impact on her learning, memory etc. The scary part is there's not a quick fix for it. We're going in for labs to check iron, serotonin, and more (things they don't check monthly for oncology), and if her iron is low she'll need a supplement and it may take 3-6 months to work. If this doesn't work there are other medicines to try ...

Too much information about something I don't know very much about. She did say they can't rule out the T&A forever, and we'll likely do another sleep study once we get the iron figured out. The way she sits straight up while sleeping still makes me think it's easier to breathe that way. Of course she didn't do that at the sleep study.

I'll post when we get lab results, it will likely be next week, we go for labs this afternoon.