I've been begging my daughter's pediatrician for well over a year to order a sleep study and am about to pay for one myself. While hospitalized in Oct '08 with bad seizures, her bedside monitor registered sleep apnea >64 seconds. Now she's seizing at school (twice in a week) and I think it's largely due to systemic oxygen depletion. Again, everyone thinks I'm a nut case. But navigating school stairs with a 30-50 lb backpack is too taxing, I think. Has anyone else out there with AIP had a sleep study done, perhaps?? Seems to me when her lips are gray, she can't get a breath and launches into seizure that oxygen in the arteries might be flowing, but what's happening at the celluar or tissue level? No data available re this issue...

I have read that sleep problems are part of AIP and my daughter certainly has them. Insomnia more than apnea but also a lack of adequate REM sleep. If your daughter's lips are turning gray, I would be concerned about whether she is developing a problem with the muscles that control respiration. Might pay to have a pulmonologist look at her. When my daughter seizes, she stops breathing. I don't know what is going on at the cellular or tissue level but I know that the longer the seizures go on, the harder it is for her to get back into reality. She doesn't know who she is or where she is and frequently does not recognize me. To your original question, we have not had a sleep study done. Did have a video EEG.