My son is 18mos old and *may* be having apnea issues, however we are not able to get very good info from our local docs...
Here is a quick summary,
Born with Tetralogy of Fallot (heart condition)
Repaired 7days after birth,
No negative side effects other than normal valve leakage.

He is very active and healthy, shows none of the typical symptoms of apnea. My wife had a simple pad monitor that was placed under his mattress to detect movement (for peace of mind) and at 14mos the alarm went off in the night. We took him to our ped. and they put him on an apnea monitor that detects breathing and heart rate. This monitor also records when the alarm sounds. The apnea alarm goes off periodically(it is set to sound after 20 secs of no breathing). By the time we get to his room, the alarm has shut off, and he is breathing fine. The Heart rate alarm has never gone off. In the midst of this, we also used a pulsox monitor to check O2 levels. This monitor has never sounded.
We have seen a pulmonologist who did both sleep study and Reflux test. Reflux test came back VERY slightly above normal, sleep test showed no Central or Obstructive apnea(confirmed by ENT).
Pulm. Dr. just wants to prescribe multiple reflux drugs and send us on our way. Ped. Dr. has no idea.  Neither Dr. can read the results of the apnea monitor!?!?
Anyone have a similar situation or any suggestions for us???
I have tried to email a few specialists out of state, but they refuse to even look at his chart without an exam.

It sounds like he's doing ok......although it is weird that nobody can interpret the monitor info.  What about the hospital where he had his surgery?  Couldn't someone there look at it and interpret it for you?

What about have the settings changed so that the apnea monitor goes off after 10 secs instead of 20?

also, what about having the sleep study read by an sleep specialist instead of an ENT?

With the O2, and heart, sleep study being normal though he must not be having any major problems though, right?  I've read that reflux can cause obstructive apnea.  Maybe he's having some apnea when he refluxes and once it goes back down, his breathing is normal.  In which case, I would think that the reflux med would resolve the problem and the monitor should quit going off.  (Does it go off every night, or just on occassion?).  I don't think I'd be eager about using "multiple" reflux meds though----why more than one?  Wouldn't it be wise to try one  at a time and see the results of that before adding another?

hope all is well

All the Dr's we've seen so far have been from or referred by the same hospital that did his surgery. It just seems that no one knows what the other is doing. The doc's that supplied the monitor can't read the results, nor can the doc's that they sent us to...
The monitor goes off periodically, sometimes once a month, some times once a week.
The other night, he had a bit of a cold, and it went off three times.
His cardiologist said he has not seen anything like this, but he's never tested a child at this age either.
The pulmonologist that we were referred to(that was supposed to read the monitor results) won't even look at the results anymore, and just keeps prescribing more reflux meds...
The sleep study did not go well because it was an adult clinic, they hooked him up and he didn't appreciate it much. He didn't sleep well that night because he was so uncomfortable, so I'm not sure the results are very accurate.

I'm not sure what our next step is, seems none of our doc's are very concerned.

JFMX345 wrote:

All the Dr's we've seen so far have been from or referred by the same hospital that did his surgery. It just seems that no one knows what the other is doing. The doc's that supplied the monitor can't read the results, nor can the doc's that they sent us to...
The monitor goes off periodically, sometimes once a month, some times once a week.
The other night, he had a bit of a cold, and it went off three times.
His cardiologist said he has not seen anything like this, but he's never tested a child at this age either.
The pulmonologist that we were referred to(that was supposed to read the monitor results) won't even look at the results anymore, and just keeps prescribing more reflux meds...
The sleep study did not go well because it was an adult clinic, they hooked him up and he didn't appreciate it much. He didn't sleep well that night because he was so uncomfortable, so I'm not sure the results are very accurate.

I'm not sure what our next step is, seems none of our doc's are very concerned.

I would research the area as best you can and find a doc of your own. That machine isn't doing anyone any good if they can't read the results!!! With your son's heart condition I would be worried about ANY drop in oxygen levels from the norm. I work in the ICU of a Children's hospital and we have babies come in everyday with the same condition. Even after it is repaired their health is nothing to play around with. Please seek out a doctor who will be proactive and listen to your concerns. If the docs you are going to right now aren't concerned then you shouldn't be concerned about hurting their feelings and going elsewhere. SA is concerning in any child but in a child with a heart condition????????? I am really concerned for him........ Please don't just take a doctor's word for it. Sometimes you have to fight for the care you or your child needs. It is sad to say but I see it all the time. (not on my floor but children that have come in from other places that had been miss managed or serious conditions dismissed as nothing) Maybe you could check into local sleep labs?