12yr old with central apnea

[GraceF]

My 12 yr old son has been diagnosed with severe OSA (RDI 71 supine 25 all in NREM and 19 supine 7.3 all in REM with sats down to 85%NREM and 92 in REM)but the study showed up to 16 central apneas an hour in NREM and only 1.9 in REM. All types of apnea/hypopnoea were substantially less in REM. As he has a history of extreme constipation leading to enlarged bowel and soiling (more than 10 yrs) is it possible to have a mild form of something that causes both central apnea and bowel motility problems? Son was prem (30wk) with Resp distress and was ventilated at 10weeks with RSV(repeated apneas requiring serious stimulation to resolve, HR down to 42 Vent for 14days and hard to wean off ventilator and still very tachy on discharge at day 21) He also had heart murmur and stopped using right side at this time (query stroke?) He was monitored on cardio resp monitors until he no longer required stimulation to resolve apneas up to 10 an hour (about 10 months and yes i often had to "shake" him to breath in those months) He also lost consiousness (from being fully awake) once at about age 2 and trace showed bundle branch block which i was told was normal in children and would be grown out of. His brother has  lambdoid craniostenosis (actual fusion not positional moulding) so there may be some genetic thing going on.
questions are.
Can you have a mild form of Ondines curse and survive to 12yrs without being ventilated?
Is there some other neurological cause that would explain both the central apnea and the bowel problem?
Can prenatal and early postnatal conditions miss-set the trigger points for breathing ie have the brain accept an O2 sat of 90% as "normal" or a low level of CO2 and so not trigger breathing at the normal levels?
Could any form of epilepsy cause this?
Should I be worrying about this or am I over reacting?
What would you be investigating if this was your child?
thank you
Grace

[nasa2mars]

i dont now

[strictlyforpain]

I have central apnea and a daughter with Jejunal Atresia. My instincts saved my daughters life on multiple occasions. I have no idea if you are right in your guesses or not. I think you have a right to start asking questions. The thing we do that makes all the difference in the world is write it down. We write everything down. The other night my daughter had a fist sized lump in her stomach protruding outward, BIZARRE!!! We gave her a stool softener and wrote it down. We log everything from bowel movements to colds and coughs and how long she sleeps. She has terrible immunity, is tired a lot and will sometimes sleep 12 to 14 hours and she's 6. Her siblings will sleep about 2 to 3 hours less per day. She's tough though. She won't back down.

I do not believe you are over-reacting. We had 3.5 years of keeping my daughter from deaths grip and it was an epic battle. You need to be asking all of these questions and more. You need to find the leading pediatric care giver nearest you even if that's 1000 miles away you need a provider you can team up with to break these problems down.

Do not give up. Do not ever doubt your love and desire to protect. Do not ever ignore your instincts to protect and love. God gave you these things that you might be the hand that covers your childs life and you must be constantly vigilant.

If I can be of any help let me know. My advice is rise up and fight. Knowledge is your weapon and vigilance is your shield. Your security will come in writing it all down so your provider can review it and see trends or patterns.

I wish you all the best. We (those of us in these shoes) have a very tough job. I can also help you with questions on apnea though there is a doctor roaming this place who is very good.