Sleep Apnea Support Forum Index
DONATE TO THE ASAARegisterI Forgot My PasswordSearchHelpLog in
Reply to topic Page 1 of 1
6 months old Apnea of prematurity still happening
Author Message

Reply with quote
Post 6 months old Apnea of prematurity still happening 
I was wondering if I could get some advice. my son was born at 29 weeks gestation and is now 6 months old actual 4 months corrected. he has been on a heart and apnea monitor since he left the nicu. we download the monitor about every 30 days. the last 2 months have been very strange. My doctor who I will be changing as he cannot answer any of my questions and believes in "wait and see" has made me mad for the last time. my son has had three events show up on the monitor in the last 30 days.  one was an apnea very similar to periodic breathing that lasted 17 seconds. no drop in heart rate it stayed at 100bpm. the next to happened when my son was awake and right after I had turned the monitor on. keep in mind that the print out for these two do not look anything like the other apneas he has had in the past. they were apnea 17 seconds with a heart rate of 12, apnea 16 seconds heart rate 20. he was awake no change in tone color mood nothing I had absolutly no indication that this was happening. the respitory therapist says that it was artifact and I saw a different pediatrician and she did n't feel that he would need to be monitored anymore. My doctor who is a neonatologist  feels that they are real and he should be on the monitor 24 hours a day. my son already has major breakdown from the bands and has no other health problems to my knowledge. I am very confused.... I personally do not believe that they are real. However I am not a doctor. my doc said "I am not concerned with how low his heart drops" I am sorry but 12 or 20 if those are real that is very dangerous and I am tired of wait and see if it goes away. keep in mind that the monitor did not alarm for both of those events it just recorded them. I was wondering who do i go see who can I talk to about this??? I have made an appointment with a different neonatologist who is also a pulmonologist. Is that all I can do? he hasn't had a sleep study since he left the nicu. what tests do I ask for??
thanks for listening


Reply with quote
Post  
Does your apnea monitor have any body position sensors that will allow you to correlate movement and desaturations?

I am NOT a physician nor am I in any position to diagnose, but it sure sounds like artifact. I have seen monitors record saturations of 0% correlating with significant moving time. The fact that your son was awake (and not blue) for these "events" also points to artifact.

In any event, children who are having desaturation issues, which it doesnt sound like your sons category, can desat very very quickly. I worked with some very sick children at Childrens Hospital in DC that would seriously desat at the drop of a hat. Its apples and oranges to your son, I THINK.

In my opinion, I dont think that it would hurt to keep him on the monitor, so long as your sons skin can take it. Im not sure what else that you can do other than get that second opinion.

I doubt that I provided anything useful here, but I do wish you the best of luck.


Reply with quote
Post  
thanks for the support. he is not on a saturation monitor. it just sounds an alarm if his heart rate drops below 70 or stops breathing for 20 seconds. I don't even know what is going on until I get the down load done. we are going to see a different neonatologist with a background in pulmonology soon so I am hoping he can shed some light on what is going on and do a little more digging to find out what is causing such severe drops in heart rate. If that doesn't work I am gonna ask our insurance to cover him going to a sleep center. I don't care what people say a child whos heart  rate drops to 12 isn't normal.


Reply with quote
Post  
bekamom wrote:
thanks for the support. he is not on a saturation monitor. it just sounds an alarm if his heart rate drops below 70 or stops breathing for 20 seconds. I don't even know what is going on until I get the down load done. we are going to see a different neonatologist with a background in pulmonology soon so I am hoping he can shed some light on what is going on and do a little more digging to find out what is causing such severe drops in heart rate. If that doesn't work I am gonna ask our insurance to cover him going to a sleep center. I don't care what people say a child whos heart  rate drops to 12 isn't normal.


Well, I agree. I doubt that you will find a physician in the world that says any heart rate beating at 12 beats per minute is normal, let alone a child with a normal heart rate > 100 bpm.

With that said, artifact (IE. Movement time) is very normal and can lead to false readings. I realize he is very young and its that much more alarming, but equipment is equipment. I really really hope that my notion is correct and that its just a result of funky readings due to your son moving.

I will definitely be thinking of you and your sons situation. Keep us posted!

Good luck. Get as many opinions out there as you can!


Reply with quote
Post  
I agree with what some of the others have said. 12 bpm is not normal. However, having had one of these delightful machines (and working on getting the next one set up), I know that if there is too much movement then the leads will not read correctly. This used to happen to Isaac when he slept.

Honestly it does sound very artifact. I won't discourage you from getting another opinion, but don't be disappointed if they say this too. I have had to learn the fine art of not seeking out docs that will tell me what I want to hear...

You said he had 3 events in a month? And all short enough that the alarm didn't go off? Wow! I wish we were doing so well...and our son isn't on a monitor.  Isaac is 2 and his apnea of "prematurity" lasted until he was about 9 months. He wasn't premature though, he was born at 41 weeks gestation.  However, we have since been rediagnosed with central sleep apnea, but it isn't the prematurity kind anymore..whatever thats supposed to mean!

I do hope you get some answers. Keep us posted and let us know if you have more questions!


Reply with quote
Post  
I agree with what some of the others have said. 12 bpm is not normal. However, having had one of these delightful machines (and working on getting the next one set up), I know that if there is too much movement then the leads will not read correctly. This used to happen to Isaac when he slept.

Honestly it does sound very artifact. I won't discourage you from getting another opinion, but don't be disappointed if they say this too. I have had to learn the fine art of not seeking out docs that will tell me what I want to hear...

You said he had 3 events in a month? And all short enough that the alarm didn't go off? Wow! I wish we were doing so well...and our son isn't on a monitor.  Isaac is 2 and his apnea of "prematurity" lasted until he was about 9 months. He wasn't premature though, he was born at 41 weeks gestation.  However, we have since been rediagnosed with central sleep apnea, but it isn't the prematurity kind anymore..whatever thats supposed to mean!

I do hope you get some answers. Keep us posted and let us know if you have more questions!


Reply with quote
Post  
I agree with what some of the others have said. 12 bpm is not normal. However, having had one of these delightful machines (and working on getting the next one set up), I know that if there is too much movement then the leads will not read correctly. This used to happen to Isaac when he slept.

Honestly it does sound very artifact. I won't discourage you from getting another opinion, but don't be disappointed if they say this too. I have had to learn the fine art of not seeking out docs that will tell me what I want to hear...

You said he had 3 events in a month? And all short enough that the alarm didn't go off? Wow! I wish we were doing so well...and our son isn't on a monitor.  Isaac is 2 and his apnea of "prematurity" lasted until he was about 9 months. He wasn't premature though, he was born at 41 weeks gestation.  However, we have since been rediagnosed with central sleep apnea, but it isn't the prematurity kind anymore..whatever thats supposed to mean!

I do hope you get some answers. Keep us posted and let us know if you have more questions!

Display posts from previous:
Reply to topic Page 1 of 1
You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot vote in polls in this forum