I am looking for other parents that have infants with central sleep apnea. Shortly after bringing my son home from the hospital, he started having dusky spells. He would pink up while awake and was feeding well. He was born at 40 weeks after an uncomplicated pregnancy. My pediatrician ordered an overnoc pulse ox study that showed sats in the 70's >15% of the noc.  She than ordered a sleep study which was done at Children's Hospital at 2 months of age. It showed significant central sleep apnea, periodic breathing, and desats to the 70's. He was put on oxygen and we were told to reapeat the sleep study at 6 months of age. The ENT and pulmonologist that we saw were very nonchalant, and we were told that he would "grow out of it". Well, he just had his second sleep study, and while it showed some improvement (5 events per hour down from 13) he still had 29 central apnea, 8 hypopneas, and 13 obstructive apneas. His sats were in the low 80's. I have a f/u appnt with the pulmonologist next week, and I am trying to figure out what I need to ask, because I have a feeling that she will say "He'll grow out of it." I have been patient so far, but they said he should grow out of it by 6 months, and he hasn't. Should I insist on a GI study (no evidence of reflux that I know of), and an MRI? He is developmentaly normal, but I still am concerned because apnea is NOT normal!
I am not sure how much longer I can be patient.
Has anyone out there had a baby that grew out of their apnea?
Thanks, Kim

Hi Kim,
My name is Kim too...looks like we may have more than that in common.  My 19 month old was just diagnosed with CSA (see the recent post about it), although his was not nearly as bad as your little one's.  I think it's been going on since he was much smaller, considering how poorly he has always slept.  Also, my boy has a severe case of GERD that was confirmed early on and continues now.

However, even though your son may not show outward signs of GERD, it is still possible to have what's called "silent reflux."  I would definitely look into getting a PH probe for him.  At the very least, an upper GI/barium swallow.  Also, with that many apneas and hypopneas, I would be concerned and insist on an MRI.  If nothing else, to give you peace of mind, which is something I'm going to do.  We see the sleep specialist/pulmonologist on Monday, and I am going to coordinate getting both the MRI and PH probe at the same time, since they have to be sedated for both and I don't want to subject him more than once.

Unfortunately, it sounds like you have been having the same frustration I have with doctors...they seem very blase about other people's kids, but as a mother your instincts are usually right.  If you feel something is wrong with your child, you have to be the advocate for him.  If you are not getting any satisfaction with the current doctors, fire them and try someone else.  Especially if you are in an area with choice.  Unfortunately, pediatric specialists are not as common, and it seems the good ones are hard to find.  But keep looking -- I have had some better luck lately with doctors.  Don't be afraid to fight for your child!  You're right -- central apnea is NOT normal!

Keep in touch...let me know how things go.

Kim

Let me start with this: I have a 22 month old with Central Sleep Apnea (CSA). He had his first sleep study at 4 months of age (72 centrals in 8.2 hours, 10-33 seconds long). He had his second sleep study at 10 months of age (10 centrals in 9 hours, 8-13 seconds long). He had his third sleep study at 21 months (26 centrals in less than 7 hours, 10-38 seconds long).  He had not had ANY obstructive apneas until his most recent study, where he had 4 episodes in the night. His pulseox doesn't normally drop below 85%, which is still not ideal, but bounces back really fast when he does take a breath.

Just from what you've said (if you could give all the specific numbers for both studies, that would be exceedingly helpful); I'd say start with the obstructive, because that could actually be affecting the number of centrals he is having. Are his tonsils/adnoids large? I would be concerned over the significant drops in oxygen levels. For the central apnea, I'd ask to see a neurologist (we discovered the hard way that pulmonolgists are not central apnea specialists, unless it's reflux, but a neurologist can treat that too!). We wasted a lot of time at the pulmonologist's office and do regret it to some degree.  From the neurologist, I'd ask for an MRI of the BRAINSTEM. It looks like we are going to have to redo his most recent MRI because they did not do a detail on the brainstem and did the brain as a whole instead. I would also ask for a PH Probe (don't do the upper GI thing, they are not reliable in kids) or a GER Scan. The GER scan is really easy and does not require sedation!

If/When you have an MRI done, know it will be under sedation and there are risks. Make it clear that you will not leave your child's side for the duration of the test (the hospital will try to bully you into not going.) If you can do it in the neurologist's office, all the better because they use sedation, not anesthesia!

Yes, there are kids that outgrow central apnea all the time, our's is not one of them, but that's okay. I have been given some great wisdom about dealing with doctors. Ask lots of questions, do your research. If they say let's do "C", when you think "A" might be a better option, then ask "Why C instead of A?". While you are the parent and know that there is something seriously wrong with your child, they are the medical professionals and know which test will get them the information they desperately need. I have found this approach very helpful when dealing with specialists. If your doctor won't spend the amount of time you need to answer your questions, find a new doc immediately. You are the consumer and have the right to have any and all answers they are able to provide.

Hope this helps! Tiffany

Hello, and glad you found the board!

Though my son does not have CSA, he has OSA. I just wanted to enourage you to don't be afraid to push the docs. I have learned that they base their answers mostly on the general and the norm, not the exception. But no one knows if your child will be the exception unless there is testing! I have found out the hard way (my son not diagnosed until he was 11) that you do not always let "time take its course."

You have received really good advice from the other two posters who know what it is like to be in your situation, but I just wanted to know that you have support here from people (like me!) who understand dealing with reluctant drs.

Take care,

Judi

Hi!
Thank you for the responses. It is nice to know that there are others out there. I feel so alone in this. If Casey had OSA there would be tons of reasearch and treatments avail. Isn't it interesting that we all seem to have boys?! I find it interesting that the docs are SO sure that he "will grow out of it by 6 months" yet you all have babies that are quite a bit older than Casey, and they still have CSA. HMMMMM....

I have the reports  from both sleep studies. Here are the numbers: At 2 months of age his RDI was 13 events per hour. That was comprised of 35 central apneas, 10 obstructive, 6 mixed, and 20 hypopneas. The mean duration was 8 seconds. Also of note was numerous episodes of periodic breathing with desats to the 70s. The number of episodes improved with oxygen at 1/8L, but didn't resolve completely.
The second study was done at 6 months. Here are those numbers: The RDI was 5 events per hour. He had 29 central apneas,, 13 obstructive, and 7 hypopneas. The average duration was 8 seconds with an associated drop in sats by 5%.
The second study picked up some snoring and noisy respirations, while the first one did not. Interesting to me because his breathing as a newborn was downright scary because he was so noisy. He did have a flexible scope done that showed mild laryngomalacia. His breathing has improved tremendously since the first couple of months.

I forgot to mention that he had a cardiology appoinment at 3 weeks of age when he started turning blue. Let me just say what a waste of time that appointment was! The doc was 2 hours late and was in the room maybe 15 minutes! She said that it was a benign murmur and that he was blue because he was cold! Well, it was August and 100 degrees outside!. I think we have pretty much disproven that theory! Anyway, we will be seeing a different cardiologist on March 24.  I hope they do an ECHO because he still has a murmur (again that he is suppose to grow out of!)

Our pulmonology appointment is on March 31. I am going to spend the next couple of weeks practicing being assertive! Wish me luck! Good luck to all of you that have appointments coming up. I'll be watching for updates. Thank you all again!

Oh, I had to respond really quickly!!!

Don't believe the hype that all heart murmurs are harmless and that they will grow out of it. Though my son is not in any immediate danger (so the cardiologist said), she recommended that we continue to watch his heart murmur (he is 11, mind you!) just in case it becomes a problem later on!!! I still don't know exactly what that means.

Right now, my son has moderate OSA and possibly POTS (postural orthostatic tachycardia syndrome). That means his heart rate can nearly double when he stands or is standing for awhile. His blood pressure can bounce from 87/57 sitting after trying to play (he has exercise intolerance) up to normal (117/70) within three minutes.

I wish doctors would stop trying to keep mothers quiet. I am not for extra or unnecessary testing, but my son is a product of the wait-n-see and time-will-tell medicine.

Take care, and keep in touch.

Judi

Hi,
I have been visiting this board on and off for over 18 months trying to find info on Central apnea in children.
My son, was 6 months old when he got diagnosed. He stopped breathing in my arms and needed CPR. He came home from the hospital with an apnea monitor. They told us he would outgrow it...he has just turned two and were still waiting.
He has run the gammit off tests, MRI etc. His pulmonolgist also found his Benign heart murmur.
Its very frustrating as I feel that were are the ones always pushing for answers. This isn't normal. We found out about 6 months ago that his oxygen levels dropped with the apneas and were going to see a different cardiologist in two weeks time.
During his first sleep study, as well as the Central apnea, obstructive was also confirmed. We waited and finally a year later we had his adneiods removed.
The way that my doctor explains it is that there isn't a relationship between central and obstructive apnea. Central is when the brain forgets to send the signal to breath and this is why my son is on the apnea monitor. He would not be on apnea monitor for obstrutive apnea.  ( You can research on line to confirm this).
I wished I had more answers for you. My son did have a MRI done to rule out any brain abnormalities and Chiari malformattion.  His MRI was normal.  We are currently just in waiting mode.
I am anxious to see what the cardiologist will say.
Good luck with everything.
Sarah

Hi, Sarah,

Just wanted to add that my son's heart murmur was called benign for years. It was generally dismissed that some children have these murmurs and that they are harmless. I am not an alarmist, but the shock I got when the pulmonologist said (11 years later)  we now have to watch it. I am not sure yet, when it changed from benign to something to watch. Seeing that we now have a 2nd diagnosis to moderate OSA that involves his heart and his blood pressure (POTS/Dysautonomia) I wish I had known to keep a better eye on things earlier.

Also, make sure that you ask about the oxygen levels during the apneas, and do you require oxygen? Isn't it a shame that we have to almost know (if not more!!) as much as the doctor in order to get proper care. If I could tell you what I have learned in a year!!

Take care,

Judi

Hi Judi,
Thanks for the advice on the oxygen. We are currently on the PS2 monitor which monitors his oxygen levels and we go back next Month for an appointment. I will be sure to ask him then about Oxygen.
Sarah