I will keep hunting. Her daughter, McKenna, also having Ondine's is in such a delicate place. How is this much different from Central Apnea? Nobody on this forum has that?! Damn, I guess it really is rare. It's a damn shame, I feel so bad.

because the whole nurse thing just seems way too much to live with and many people here have CSA and deal with it using certain machines... no nurses. I found the diagnosed name of what they had, and it's called CCHS or Ondine's Curse. Here is a memorial written by a good friend of hers. http://abr...

No I understand that, it's just so foreign to me. So does anyone have any links to research by neurologists of any kind? I was hoping there was more push for a cure, not treatment.

There were tests done, if she was fitted with a trach as an infant, for sure. If she falls asleep in the back seat of the car, she could die. On long trips, they'd hook her up just in case, because we all get sleepy in the car. I just wish there was something else that could be done, on a neurologic...

I would think it's dangerous, depending how severe your case is
My cousins wife died last night because she didn't hook up to her ventilator. :/

Were in the USA. The deceased came from a pretty wealthy family in Westchester NY, so I'd like to believe they got the best treatment available. The little one is only 6, and it's troubling imagining this happening toher. Something happened with the mobile version ofof hisite and sitesND e nd And it...

I will find out exactly the diagnosis, but from my memory, my cousin Eddie has always said that their "brains stop sending signals to breathe at night", thus the trach and the machine which breathes for them. Neither are overweight, and both had the operations when they were infants, as I mentioned.

Hello CPAP community. I'm not really finding much information on SOAS on the internet http://www.ncbi.nlm.nih.gov/pubmed/23019966 Maybe it's just that uncommon, or rare a condition. Both my cousin's recently departed wife and his daughter were born with this condition, and resulted in tracheostomies...