5 yo Chiarian just diagnosed with Central Sleep Apnea Syndrome (CSAS)

Hello everyone. My 5 yr old was diagnosed with Chiari last summer and we've had 4 different NS over the fall/winter tell us that decompression "sooner rather than later" is highly recommended. None of these were "experts" so I'm in process of setting up consults with the LAST two NS so we can schedule the decompression at the earliest possible date.

I just found out via sleep study that my son has Moderate Central Sleep Apnea Syndrome (CSAS). I know that Pediatric numbers are different but his overall apnea-hypopnea index was 6.2 events per hour with central events at 5.8/hr for a total of 37 Central apneas lasting a mean of 11.0 seconds over 385 minutes. (Plus a bunch of other stats).

I tried to find a Pediatric Pulmonologist in my state ALL day and they are all booked until June-October at the earliest. We can probably have the decompression sooner than this! My question....do I need to do something for the upcoming weeks (decompression could be any time from May to July) to treat the sleep apnea or are we safe doing nothing until he has the decompression since he's apparently had this going on since birth?

Sleep Apnea is very dangerous for pediatric Chiarians. Your son's Pediatrician can prescribe an apnea monitor. Yes it will wake him up when he stops breathing but may save his life. We have a father of a 10 year old Chiarian that died from sleep apnea. His mission is to educate every parent of the dangers of sleep apnea and CM. Please read these links. I am not and do not want to scare you but I would rather scare you and your son be alive. I am very sorry but this is that serious.

http://www.medhelp.org/posts/Chiari-Malformation/Chiari

-Related-Death/show/1176509

http://www.medscape.com/viewarticle/458614

http://www.chiariconnectioninternational.com/doctor.php

http://www.conquerchiari.org/documents/presentations/SYMPTOMS%20Presentation.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2065999/