Curiosity question -
For all of the parents out there with children who have Central Apnea, are your children on Apnea Monitors ?
If not, how do you know how many apnea episodes they are having ?
Thanks
Sarah

Sarah,

Isaac, almost 2 with moderate central apnea, is not on an apnea monitor and hasn't since about 8 months of age. Here is why:

With the apnea monitors, they measure movement in the chest cavity and diaphragm. When your child has a central apnea episode, their diaphragm will still contract and relax even though they are not breathing. Therefore, for us, it wasn't catching his apnea until he had stopped breathing for long enough that his diaphragm also stopped moving (about 20-30 seconds after he initially stopped breathing, so he wasn't breathing for 40-50 seconds, which rarely happened). It wasn't worth the expense and he hasn't ever had to be resusitated, mainly because we wore him or slept with him for all of his infancy and always knew within 5-10 seconds that he wasn't breathing, could tap his foot and he'd take a breath and we'd all move on. Because now he is older and comes out of episodes on his own within 15-30 seconds, we don't worry about it. Our pulmonologist assures us that he is beyond the age that they die in their sleep from apnea and that we are not crazy.  

We don't know how many episodes he has in a night (he had more than 25 in 7 hours at his last sleep study), and we don't think it's relevant. I can gauge how bad his night was by how soon he wants a nap and how long he sleeps once he gets it. We know he has the apnea and when it goes away (it did once for about 5 months, ages 9.5month-14months) we will know because he won't want to sleep 14 hours a day.  I guess we have reached a point that we know he has the apnea, now we just want to figure out what is causing it and how to fix it.

We still go with the attachment parenting model, which why (we believe, and our docs agree) Isaac is even alive now, because he should have been dead his first months with the severity of his apnea. We hated the monitor, because we felt like we needed to let him have the episode long enough to trigger the recorder and the alarm so they could get info, but what we really wanted to do was just stimulate him a little before he turned gray.

I don't know if this really answers your question or not, but I hope so. How old is your son? Where are you? What tests have been done and what are some of his sleep study numbers (if you have them)...

Tiffany, mom to Isaac, adorable intelligent, just forgets to breathe every now and then :(

Tiffany,
My son is two and also still sleeps in our room.
I am not sure if I agree with your comment  "With the apnea monitors, they measure movement in the chest cavity and diaphragm. When your child has a central apnea episode, their diaphragm will still contract and relax even though they are not breathing." I know with our sons monitor it  will alarm after 20 seconds of no chest movement. When the alarm goes off there is no breathing movement at all from him. I do not see his chest or admomen moving. Surely if his diaphram was still moving then we would see movent in his abdomen ????
I think its great that you feel comfortable for Issac not to be on a monitor :)
Sarah[/quote]

What I was trying to convey is: Yes, the monitor will eventually pick up an apnea episode, but while you think the episode is 20 seconds (because the alarm went off), it is really probably closer to 30-40 seconds because that's how long it takes for the diaphragm to stop moving.

I hope that clears it up. We feel comfortable because his episodes are usually only 10-25 seconds long, so the monitors don't pick it up.

Tiff

Why would the doctors class the apnea from when the chest has stopped but not the diaphragm ?
Everywhere I read says apnea is when the chest stops rising...no where talks about the diapgragm ?
Wouldnt the Doctors actually tell us this information ?

More questions I know, but I am just trying to figure out if your doctors know more than what our does.

Sarah

Both doctors are right. Here's the deal. The monitors (the ones at home, not at a sleep study) measure apnea from when there is NO chest movement, this includes the diaphragm. Therefore, when the chest (lungs) stop moving it takes an additional 10-25 seconds for the diaphragm to stop, too.  This is why when you have one of the monitors, they have to stop breathing for 30 seconds for the alarm to sound, not just 20. I don't know a good way to explain this by typing...But I'll try:

Breathing stops (chest movement ceases) 1-15 seconds
Machine detects nothing
Diaphragm stops moving 15-30 seconds
Machine starts detecting at this point, but your child has already not been breathing for 1-15 seconds
Alarm sounds 20 seconds after the diaphragm stops moving.

I hope this makes it clearer. We had it explained to us so many times by the technician that downloads them, the tech that reads the downloads, the pulmonologist who reads them for herself, the neurologist who looks at them and says this tells him nothing because there isn't a reliable way to know how long the episodes truly are based on them. I'll give an example. Isaac was on the monitor for about 6 months (almost 2 months old until 7 months old). His downloads did show apnea and a lot of it. However, when we did his sleep study, his episodes were showing to be anywhere from 10-30 seconds longer than the monitor at home was telling us. I know it sounds crazy, but unless they are really not breathing for that long, the monitor (for us) was not worth the expense ($80/month).  He rarely set the alarm off, but he would stop long enough for the recorder to start (ours was set to 15 seconds).  He set of his heart rate alarm more often than his apnea alarm.

Hope this more helpful..Tiffany

Well I feel comfortable know that my sons doctor who is an Pulmologist with a neurology background knows what he is talking about.

I think once the chest has stopped moving, this gives the  doctors a good baseline for measuring how long they have stopped breathing for.  

I feel very comfortable with the monitor and believe that we need it. There have been several occasions where my son's monitor has alarmed and there has been a clinical change in his lips.
I think that the alarm startles my son and this is when he will take in a breath. I personally would not feel comfortable him not being on the monitor, even though he is in the room with us. If he wasnt on it, I would not be able to sleep.

I think there has been a misunderstanding. There is certainly a time and place for a monitor and each child's needs are going to be different. Our son doesn't need one, but someone else might. I am glad you are doing what you feel comfortable with because that is very important. If you can't sleep at night, then you are worth much to anyone. I am thrilled that you are making choices that protect your son and give you peace of mind.

Mom's know what is best for THEIR families not for everyone else's and I didn't mean to imply that I did. I apologize for any offense. I do hope we can continue to have good conversation about our different situations and have deep respect for one another's decisions...

Hi, Sarah.
My son was diagnosed with CSA at 2 months of age. He sleeps with a pulse oximeter that tracks his oxygen saturation and heart rate. It is not a true apnea monitor that monitors chest movement. He is now 7 months old and still sleeps with the monitor on. It rarely alarms, as long as he keeps his oxygen cannula in his nose. (Very tricky with a mobile, active, grabby boy!)
He has been sleeping in his own room since he was 4 months old. Honestly, without the pulse ox, I would never sleep! I am able to sleep, because I know the alarm will wake me up if he is apnec long enough to cause a drop in his O2 sats.

The decision to use a monitor is a personal one. If it helps you sleep, then I say use it!
Our insurance covers 80% of the cost, and we pay 20%. At some point we may stop using it, but for now it definitly provides peace of mind.
Kim

We plan to ask our neurologist for a pulse oximeter at our next visit. I think it would be wise, not just for the alarms, but to have the data for future docs (we may be moving soon). Do you know what a pulse oximeter costs?  Our insurance only paid 1/2 of our rental of the apnea monitor (can't complain, I've never seen a bill for a sleep study or MRI and those run in the thousands!). We do think, however, we would like to just purchase the oximeter outright, if they'll let us.

Being a mom of a toddler/infant with CSA takes a lot of courage and patience, as the answers are often slow in coming.  I am sad there are so many others diagnosed with CSA, but am glad to see other parents here...Thanks for sharing pieces of your lives with us!

Kim,
Thanks for your reply. My son is currently on the PS2 which measures heartrate, Breathing and Oxygen Levels.

I wasnt sure what you meant when you said "It is not a true apnea monitor that monitors chest movement" ?

Sarah

Emily is on a smart monitor 2.  I am not sure if this is the same monitor as you guys were talking about in the ealier posts, but it measures her heart rate and breathing.  I do not have the cord for the 02 sats...wish we did and I may check into that.


_________________
Ashley F.

-Proud Mommy to Emily Grace CSA, Truncus Arteriosus, Ventral Septal Defect, and GERD.
God's Gift to us!

-Proud Wife to Disabled Veteran Corporal F. United States Marine Corps

Ashlee,
We are only using the PS2 for a short time, we are normally using the smart monitor. Our doctor likes to check on my sons O2 levels now and again.
Sarah