Jess has developed yet another problem. We have had to move her to the recliner to sleep because her lips turn blue if she is laying down!!! We have had to attach a board to keep the recliner from going all the way back because even that is too flat for her to be able to breathe. Laying down flat makes it hard to breathe even while awake and/or not having the full torso muscle spasms, regardless of the position she is in (on her back, front side, curled in the fetal position/whatever). This happened at the hospital during that 5 day EEG but only once and they didn't really comment on it other than to say, "Hmmm. That is odd." They did tell us to not put the head of the bed down all the way. Very helpful, weren't they? I have a call in to her doctor because it has started to become a regular thing. NOT one we want. We HAVE told the doctor about it in the past (both reg doctor and neuro doctor) and neither of them seemed terribly interested/concerned. It now happens 2-5 times a week! We have to get a sleep study done. They told me she didn't need it at the last appointment, but if she kept having problems to tell them. I have gotten to the point that I can't sleep well when she is asleep because I keep checking on her - this really scares me. When she wakes up with blue lips, she is NOT breathing well. I don't mean she is wheezing, she is not able to fully expand her lungs due to muscle spasms. We have her use albuterol at that time, but there has to be some way to stop this. The albuterol doesn't address the real problem the way it would if this happened because she had asthma. She has albuterol because when she was a toddler she would wheeze when she got a cold, which they said meant she had mild asthma. Now they want her to use it when the muscles in her torso spasm because she is unable to fully expand her lungs then. By "spasm" I mean they turn to being hard like concrete very suddenly no matter what she is doing. The docs wanted to ignore this until I started having her use thank you's peak flow meter and showed her numbers dropped by almost half when the spasm hits. She can be doing anything or nothing when the muscles spasm. I am sick of this. I want my kid to feel good. I want her to be able to breathe all the time and not always hurt. Is that so much to ask for? I don't know how I would cope if she died or went into a coma because she was asleep and couldn't breathe because her muscles spasmed.