tracey wrote:Finally! A place I may get some help. :)
My 2-year-old ds Joey was diagnosed w/ sleep apnea while in the hospital for an asthma flare up. The first night he was there his oxygen levels dropped into the low 70s while he was sleeping and his heartrate became slow (low 80s) and irregular. Same thing happened the next night. No problems while he was awake though. He was released with a sleep apnea monitor and a pulse/oxygen monitor for home. He sets off the alarms at least 2 to 3 times a night. He had a sleep study done, but while we were waiting for the results, he was hospitalized with pneumonia. Just like always, he dropped his levels, but this time he wouldn't wake up w/ normal stimulation. Scared the heck out of me and the nurses! The nurse was able to wake him up by digging her knuckles into his chest. From what they could tell, the Robitussin with codeine they gave him made the apnea worse and that's why it was so hard to wake him up.
We got the results of the sleep study, which showed he had central sleep apnea, not obstructive. His apnea spells only last about 10 seconds, which is normally not a problem, but in that short amount of time, his oxygen levels drop into the low 70s. The doctor who read the test said she has never seen someone's levels drop so fast. He recovers immediately though. They just can't figure out why his levels drop so fast. They did some genetic testing, which we are still waiting on the results of. We do know that the test for centralized hypo-ventilation syndrome came back normal, which is a good thing. From what we've been told, central sleep apnea is almost always a sign of some other type of disorder. Could the central apnea spells be caused by his asthma? What types of disorders can cause this? He also has quite a few developmental delays and sensory issues. I have to wonder if it is all connected somehow.
All the doctor's we've talked to are stumped. They do not have much experience w/ central sleep apnea in children and none of them have ever had a case like Joey's. We are having a second sleep study done on July 7th and I have a feeling that after that we will be refered to another doctor. I just don't know what we should be doing at this point. THe doctors don't know much about it, so I'm trying to do all the research I can, but there isn't much out there on central apnea in kids. Does anyone here have any guidance for me? Or maybe know some more about this and what we should be looking at or which direction the doctor's should be pointing? Are there specific disorders they should be testing for rather than shooting in the dark and hoping for a hit? It's all very frustrating, and frankly scares me. I want to know what is wrong with my son and how I can help him.
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