Okay, so there have been several discussions where monitors are mentioned with infants and young toddlers with central apnea. We have been under a little scrutiny because we choose not to use a monitor for our 2 year old son with moderate central apnea. When he was diagnosed with central apnea, we were told that the monitor he had was designed to monitor obstructive apnea and we could either keep it or give it back based on our comfort level. We gave it back at about 8 months of age (October 2006).

Here's how his monitor worked.
1. Two "stickers"/electrodes were placed on his last rib, just above the rib cage.
2. Plug everything in and turn it on!
3. I monitored his heart rate and his breathing rate.

I would like to know what your monitors are monitoring. If they are monitoring more than just chest movement before it sets an alarm off. If they monitor the pulse ox. If they monitor heart rate.  Do you own them or rent them? I am intrigued by a conversation I had this week with another mom that said her son had a machine that said on it "Central Apnea Monitor". This was not available to us when our son was an infant, so now I am interested in learning a little more...

Thanks in advance for the input! Tiffany

Tiffany,
We own our monitor after the insurance paid for it, as we have had it so long. This is the smart monitor: http://smartmonitor2.respironics.com/ .  This monitor sounds like what you describe, although I have not heard of this monitor being used for obstructive apnea.
From time to time we switch the monitors to the Smart Monitor 2 :http://smartmonitor2ps.respironics.com/
This monitor also includes the oxygen saturation level which our doctor likes to check now and again.
Hope this helps.
Sarah

Sarah,

Thanks for your input. I did some research on the monitor we used to have and the monitor that you have now. Our was developed in the 80s and is not as refined in how it determines when a child is breathing or not, so it has been generally used for just obstructive apnea. The one you have was not available (at least where I live) until about 10 months ago, and it's still hard to get your hands on one. It monitors things a little differently in how it monitors when a breath is or is not taken.

We had a neurologist appointment yesterday. He suggested that we just get a pulse oximeter (which we'll have to fight tooth and nail with insurance to get) because of the drops in O2 sats. He, along with my husband and I, are less concerned about the actual apnea events because he 99 times in a hundred comes out of them spontaneously. However, that being said, he thinks it would be a good idea to get a full monitor with the pulse oximeter (if insurance will pay for it) to get a better baseline of what his sleeping is like over a period of time and not just one night.

Thanks for your input. I definitely know more about monitors than I did before. God has been faithful and proven Himself the Great Physician in giving our son breath everyday, and we trust Him that Isaac will continue to grow and develop and do great things in life... We go see our GP today for his 2-year checkup and we plan to ask him for the monitor, the neurologist said that the GP or pulomonology had to order it if we wanted less fight from the insurance...We'll see!

Thanks again...
Tiffany, mom to Isaac...2 in just 7 days!

Tiffany,
Good luck with the insurance.
Keep us updated on how everything goes.
Sarah

Sarah,

We are going back to the pulmonologist on May 30th. Karen, our nurse practitioner, has had some luck with getting insurance to pay for the monitor, especially if it is a short term thing. We are only going to get it for 1-2 months for data retrieving purposes, as none of us are concerned about his safety during the night. We just need to get a better baseline, than a one night sleep study in a strange place in a strange bed with strange people around can provide!

Thanks for the encouragement, I am glad you all kept bugging me about the monitor thing. I thought you were all crazy for using an old monitor that doesn't monitor the central at all, but in fact a new monitor had been released that we were unaware of! Thank you for making me curious about it all. I think this will be a really good thing for Isaac...

Tiffany

Sarah,

We are going back to the pulmonologist on May 30th. Karen, our nurse practitioner, has had some luck with getting insurance to pay for the monitor, especially if it is a short term thing. We are only going to get it for 1-2 months for data retrieving purposes, as none of us are concerned about his safety during the night. We just need to get a better baseline, than a one night sleep study in a strange place in a strange bed with strange people around can provide!

Thanks for the encouragement, I am glad you all kept bugging me about the monitor thing. I thought you were all crazy for using an old monitor that doesn't monitor the central at all, but in fact a new monitor had been released that we were unaware of! Thank you for making me curious about it all. I think this will be a really good thing for Isaac...

Tiffany

hi all,
my son is not a ped....but rather is 24 yr old, with severe physical & intellectual disabilities.  He did his first sleep study in feb but we have still not been able to talk w/the sleep specialist.  The appt. keeps being rescheduled, with the most recent being for June 2.  So, can you give me your 2 cents worth?

I feel strongly that he has central apnea, which worsened the last few years (up to 60 sec), but not every night and usually the same time during the night.  Those of you with central apnea-----have drs. confirmed that it can occur sporadically (my son't internist thinks ifr he has it he would experience it every night).?  The reason I am so sure is because his chest stops moving and I time it w/the clock in his room.  It is usually just a 20 min. time period during which the pauses go from 13 sec up to 63 sec then go back down again until he is breathing normally again.  Have you guys heard of that pattern before?

The sleep study also reported that he experience no deep sleep (stages 3 & 4), but didn't comment about it.

so here's my main questions:

since I have been so sure my son has apnea, but very little showed up on the sleep study (all during REM) and no stage 3 & 4 sleep was noted..................

do you think maybe he ususally DOES have stage 3-4 sleep and that is when his apnea occurs?

that maybe he didn't have those deep sleep stages because of the study disturbing him?

but, how would I get around that?  is there a way to monitor ---- say using an "apnea monitor" like infants use, to see if more apnea shows up at home????

I do declare, I think that's a good idea, but what do you think?
thanks

I can give you my 2 cents for whatever that's worth, but your son seems far more complicated than mine...I do, though, have extensive experience caring for special needs children and adults.

Question #1: Is there a pattern to sleep apnea? Sometimes yes and sometimes no. It is possible, not entirely uncommon. I know our pulmonologist often asks us if they happen at the same time at night. Isaac's happen all night most every night and almost every nap. He does not have any sort of pattern at all, but I know of a couple that do!

Question #2: If his sleep study showed no sleep stage 3 or 4, then he probably didn't have any stage 3 or 4 sleep that night. Isaac's episodes do not occur during any particular stage of sleep, although his more severe episodes are usually in REM sleep.

Question #3: If your son is easily bothered by being in another place with everything different than home, then it's entirely possible that he did not get a "normal" night's sleep. I will expound on some ideas for making this easier at the end of this reply.

Question #4: In regards to an apnea monitor, we are trying to get one because we believe Isaac has far more severe episodes at home than at the sleep lab for 2 reasons. Reason 1 is that I have to sleep in the bed with him and his body regulates its breathing better if there is another body to help it keep its rhythm. Reason 2 is that they do not allow him to fall asleep early enough and wake him up too early, so his body has trouble finding any sort of "normal" sleep pattern. Our neurologist and pulmonologist agree that an apnea monitor with pulse oximeter is going to be our best bet for getting a true base line of sleep for Isaac. We are hoping to skip our regularly scheduled (every 6 months) sleep study and go with the monitor instead. I do not know if they work the same on adults as they do kids...

I hope this has been some help for you. I have a few tricks for pulling off successful sleep studies..Here you go!

For 2-3 times before the sleep study, practice putting the "stickers" on his body and face with long pieces of yarn attached. Have him sleep like this for as many nights as possible before the test. How many stickers are left are how many ________________ he gets as a reward in the morning! This works great for kids, and I don't want to belittle your son, but it might work??  Also, when you go for the sleep study, take his sheets and put them on the bed, take his favorite pillow and any other loveys. You can also bring music, if that helps. For Isaac, we always bring his two favorite animals and he holds onto them instead of accidently pulling his stickers off during the night. It works pretty well.

I am sorry this post is sooo long, but I wanted to try and answer your questions...Hope this is of some help to you!

Tiffany, mom to Isaac, who turns 2 on Tuesday, remembers all his letters with sounds, but can't seem to remember to breathe when he sleeps!