Okay, now that it seems we have a decent sized crowd of parents with kids that have been diagnosed with Central Apnea, I have a question and possible experiment of sorts.

I have been observing Isaac's sleeping habits for the last few weeks and have made a few observations. I tend to gauge how his night sleep is by how tired he is the next day and how long he naps during the day.  Here's where the newest thought comes in...

I have noticed recently that his worse nights are when he is very warm without a blanket. Or when he sleeps in his travel bed tent (Peapod Plus) and it is in a warm room. I think his apnea events might actually be triggered by his body temperature. If he is sick or his body is exceptionally warm, he seems to sleep poorly (at night and at naps).

2 Questions for you:
1. Have you noticed any triggers for the otherwise unexplained central apnea?
2. Would you be willing to play with theory of body temperature affecting the frequency and severity of the episodes?

I know it sounds truly strange, but it is the only continuity in his quality of sleep.

Thanks in advance....Tiffany

Here's the scoop. Since I posted this last, we decided to do a little more scientific documentation of our theory. Here's what we did, and we would encourage any other parents of children with an "unexplained" "mysterious" "unsolvable" Central Sleep Apnea to do the same and let's compare notes each week. I would love to see if there is something to this, but don't think any doc is going to be willing to investigate it further without other documentation. Here's our method:

1. At bedtime, take their temperature (it doesn't matter where, just be consistent)
2. If they wake or you notice a significant apnea event, immediately take their temperature while soothing them.
3. Record all of this info and share here.

There is no right or wrong answer, but just piece of a puzzle that may or may not fit into the one we're all trying to solve now.

Thank you in advance for your participation and input!! I will of course be posting ours, too!

Tiffany, mom to Isaac, who at the age of 2 isn't showing any signs of improvement...quite the contrary

Tiffany,
My son tends to be on the cold side. His room is quite chilly. Since he is only 7 months old, I don't have any blankets in is bed. I layer him and use blanket sleepers. It will be interesting to see if there is a trend here with other kids. Also, the weather is getting warmer, and soon his room will be one of the warmest in the house! Hopefully, it won't get any worse!
Waking up at night right now is a problem because he is teething and is miserable :(
Kim

Hi my name is Ashley.  My daughter, Emily just turned 1 and was diagnosed with Centralized Sleep Apnea at 2 weeks old.  She has a problem with GERD, ear infections, and was born with a rare heart defect called Truncus Arteriosus.  Her heart defect was repaired at 2 weeks old through Open Heart Surgery.  She is still sleeping on a smart monitor system and we visit the pulmonary doc monthly.  I found this board because I have had no satisfaction with my pulmonary doctor.  He is a wonderful person, but so far, hasnt been able to give me any answers.  Right now he just has her on caffeine and wants to try Phenylbarbitol (*yikes*) next.  He refuses to tell me for certain if she is having seizures???
I am going to Duke Hospital next month to get a second opinion (we now live in Greenville NC-there is a GREAT children's hospital here).  

Anyway, sorry for the long introduction...I have noticed that if Emily gets too hot she is more apt to have an apnea spell.  She is really hot natured anyway (I guess because of her heart).  I keep our house at about 68 degrees.  We visited my inlaws-who keep their house a steamy 72 or so and Emily had probably 3-4 apnea alarms nightly...her monitor goes off at 20 seconds of not breathing.  I am still learning all of the lingo for this board lol, but so far I know that Emily's apneas average 20-30 seconds and she has had as many as 49 in one month.  I am definately willing to try to record her temps.
Will keep you guys posted and I look forward to talking with you.  I am so ready for some input and I am so glad to have found you guys!

Ashley F. (23, Greenville NC)
Mom to Emily Grace, 1 year, Truncus Arteriosus, VSD, CSA, GERD...she's truly our gift from God!