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Raising Special Needs Kids Raising Special Needs Kids

Two specialists. Two opinions. Confused mom.

Posted by on Aug. 2, 2014 at 10:26 AM
  • 15 Replies
My daughter had a follow up sleep study after her tonsils and adenoids were removed because of obstructive sleep apnea. We saw the ENT and were told it was much better and if she was an adult they wouldn't worry. But because she is a kid, he still has some concerns. He wants to try a couple meds (allergy and reflux) and if she gets worse do a scope to see if she has anything blocking her airway.

Then we saw the pulmonologist earlier this week who said how great the sleep study was. She didn't have the final report but what she saw looked better. The pulmonologist called yesterday with the final report and said again how great it was.

I debated whether to tell her how I was confused because I thought maybe I misunderstood what the ENT said. But I decided that was the best opportunity. She checked the ent's notes and confirmed what he had said. I didn't misunderstand. So she was going to look into it.

I haven't seen the report and requested a copy but from what I was told the obstructive events are minimal if any. The first study she had 17 central episodes and this time 11. So yes it has improved but that still means that she stops breathing at least once an hour. I have seen her stop. And early this morning I heard her gasp and she kicked her feet hard. I am pretty sure she had to have stopped breathing for a significant amount of time to jump that bad. I am so glad for the improvement but to know she is indeed still stopping worries me. And I feel torn between the opinions of two doctors who I really respect.
by on Aug. 2, 2014 at 10:26 AM
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Replies (1-10):
TommyAbby
by Bronze Member on Aug. 2, 2014 at 1:41 PM

Go with the ENT. He is the one that would order all the follow ups regarding sleep studies anyway.. not the Pulmonologist. 


jjamom
by Michele on Aug. 2, 2014 at 2:18 PM
1 mom liked this
My son had a team of doctors working with us on his OSA. The pulmonologist was actually the one, for us, who ordered the CPAP, the nightime oxygen, and the second sleep study. The ENT took his tonsils and adenoids out and ordered the third sleep study, but we saw the pulmonologist for follow up on the sleep study. We go to Johns Hopkins and they have Pulmonologists who are sleep specialists in their pediatric pulmonary division. So, the pulmonologist may order a sleep study as well. Either can, I believe.


Quoting TommyAbby:

Go with the ENT. He is the one that would order all the follow ups regarding sleep studies anyway.. not the Pulmonologist. 

TommyAbby
by Bronze Member on Aug. 2, 2014 at 2:20 PM

I know either can, but what I got from the post was the ENT started the process so he/she should finish it.. KWIM?

For my daughter, it was ENT the whole way. 

Quoting jjamom: My son had a team of doctors working with us on his OSA. The pulmonologist was actually the one, for us, who ordered the CPAP, the nightime oxygen, and the second sleep study. The ENT took his tonsils and adenoids out and ordered the third sleep study, but we saw the pulmonologist for follow up on the sleep study. We go to Johns Hopkins and they have Pulmonologists who are sleep specialists in their pediatric pulmonary division. So, the pulmonologist may order a sleep study as well. Either can, I believe.
Quoting TommyAbby:

Go with the ENT. He is the one that would order all the follow ups regarding sleep studies anyway.. not the Pulmonologist. 


jjamom
by Michele on Aug. 2, 2014 at 2:25 PM
1 mom liked this
I'm confused, though, because you said they were central apnea episodes. Obstructive apnea occurs when something blocks the airway (huge tonsils, adenoids or other structures that may collapse during sleep, for example). Central apnea episodes happen when the brain fails to tell the body to breathe. Maybe this is where the confusion lies in the results? But even that doesn't really make sense because the ENT said there may be something else obstructing the airway.

I hope you get to the bottom of it soon. Let us know what you find out.
jjamom
by Michele on Aug. 2, 2014 at 3:00 PM
1 mom liked this
Maybe I missed something from another post or something because it wasn't clear to me from the post who had ordered the sleep study, since they were seeing both doctors, or if it was a case like ours where the two were working together on it. My point was just that the pulmonologist can order the sleep study and treat sleep apnea patients.

Quoting TommyAbby:

I know either can, but what I got from the post was the ENT started the process so he/she should finish it.. KWIM?

For my daughter, it was ENT the whole way. 

Quoting jjamom: My son had a team of doctors working with us on his OSA. The pulmonologist was actually the one, for us, who ordered the CPAP, the nightime oxygen, and the second sleep study. The ENT took his tonsils and adenoids out and ordered the third sleep study, but we saw the pulmonologist for follow up on the sleep study. We go to Johns Hopkins and they have Pulmonologists who are sleep specialists in their pediatric pulmonary division. So, the pulmonologist may order a sleep study as well. Either can, I believe.


Quoting TommyAbby:

Go with the ENT. He is the one that would order all the follow ups regarding sleep studies anyway.. not the Pulmonologist. 

Love2foster2009
by Member on Aug. 2, 2014 at 5:18 PM
Her first one was ordered by the pulmonologist. She sent her to the ENT when she got the results. The ENT and pulmonologist both wanted a follow up one after the surgery and both wanted to see her after the sleep study was done.

Quoting jjamom: My son had a team of doctors working with us on his OSA. The pulmonologist was actually the one, for us, who ordered the CPAP, the nightime oxygen, and the second sleep study. The ENT took his tonsils and adenoids out and ordered the third sleep study, but we saw the pulmonologist for follow up on the sleep study. We go to Johns Hopkins and they have Pulmonologists who are sleep specialists in their pediatric pulmonary division. So, the pulmonologist may order a sleep study as well. Either can, I believe.


Quoting TommyAbby:

Go with the ENT. He is the one that would order all the follow ups regarding sleep studies anyway.. not the Pulmonologist. 

Love2foster2009
by Member on Aug. 2, 2014 at 5:24 PM
I think that is why I am confused too. She does snore since the surgery but very very rarely. And to be honest what I noticed before the surgery was what appeared to be her not even attempting to breathe which I thought was a central episode. My understanding of obstructive was that she was trying but the airway was blocked. The night after her surgery there was a period where her pulse ox alarm was going off because it was down in the 70s. The nurse offered oxygen but I said what's the point if she isn't even trying to breathe. I know 11 times doesn't sound like much but it still bothers me to know it happens at all.

Quoting jjamom: I'm confused, though, because you said they were central apnea episodes. Obstructive apnea occurs when something blocks the airway (huge tonsils, adenoids or other structures that may collapse during sleep, for example). Central apnea episodes happen when the brain fails to tell the body to breathe. Maybe this is where the confusion lies in the results? But even that doesn't really make sense because the ENT said there may be something else obstructing the airway.

I hope you get to the bottom of it soon. Let us know what you find out.
jjamom
by Michele on Aug. 2, 2014 at 5:28 PM
That makes sense. That was similar to what we did as well, but we also had a cardiologist involved as well because my son had an unrepaired heart defect and pulmonary hypertension. If they are colleagues, I'm sure they'll get together on it to discuss the findings and figure out a plan for moving forward. It'll just be hard waiting for them to collaborate and give you answers. Hang in there!

Quoting Love2foster2009: Her first one was ordered by the pulmonologist. She sent her to the ENT when she got the results. The ENT and pulmonologist both wanted a follow up one after the surgery and both wanted to see her after the sleep study was done.

Quoting jjamom: My son had a team of doctors working with us on his OSA. The pulmonologist was actually the one, for us, who ordered the CPAP, the nightime oxygen, and the second sleep study. The ENT took his tonsils and adenoids out and ordered the third sleep study, but we saw the pulmonologist for follow up on the sleep study. We go to Johns Hopkins and they have Pulmonologists who are sleep specialists in their pediatric pulmonary division. So, the pulmonologist may order a sleep study as well. Either can, I believe.


Quoting TommyAbby:

Go with the ENT. He is the one that would order all the follow ups regarding sleep studies anyway.. not the Pulmonologist. 

Love2foster2009
by Member on Aug. 2, 2014 at 5:29 PM
I really like both doctors and I wish only one was involved now. But I think, unless her asthma gets out of hand, that we will probably only have one more scheduled visit to the pulmonologist. It will probably be as needed after that. We actually were there for a completely unrelated issue when the whole apnea thing came up. The ENT will probably see her more. She just got another set of ear tubes about 8 months ago so he will have to follow her for that.

Quoting TommyAbby:

I know either can, but what I got from the post was the ENT started the process so he/she should finish it.. KWIM?

For my daughter, it was ENT the whole way. 

Quoting jjamom: My son had a team of doctors working with us on his OSA. The pulmonologist was actually the one, for us, who ordered the CPAP, the nightime oxygen, and the second sleep study. The ENT took his tonsils and adenoids out and ordered the third sleep study, but we saw the pulmonologist for follow up on the sleep study. We go to Johns Hopkins and they have Pulmonologists who are sleep specialists in their pediatric pulmonary division. So, the pulmonologist may order a sleep study as well. Either can, I believe.


Quoting TommyAbby:

Go with the ENT. He is the one that would order all the follow ups regarding sleep studies anyway.. not the Pulmonologist. 

jjamom
by Michele on Aug. 2, 2014 at 5:33 PM
It is possible for someone to have both central and obstructive sleep apnea, so I wonder if she is having both.

I agree, it is very scary and I would definitely follow through on their recommendations. I don't know much about central apnea, since my sons was 100% obstructive and thankfully resolved after his tonsils and adenoids were removed. Good luck and let us know what you find out.

Quoting Love2foster2009: I think that is why I am confused too. She does snore since the surgery but very very rarely. And to be honest what I noticed before the surgery was what appeared to be her not even attempting to breathe which I thought was a central episode. My understanding of obstructive was that she was trying but the airway was blocked. The night after her surgery there was a period where her pulse ox alarm was going off because it was down in the 70s. The nurse offered oxygen but I said what's the point if she isn't even trying to breathe. I know 11 times doesn't sound like much but it still bothers me to know it happens at all.

Quoting jjamom: I'm confused, though, because you said they were central apnea episodes. Obstructive apnea occurs when something blocks the airway (huge tonsils, adenoids or other structures that may collapse during sleep, for example). Central apnea episodes happen when the brain fails to tell the body to breathe. Maybe this is where the confusion lies in the results? But even that doesn't really make sense because the ENT said there may be something else obstructing the airway.

I hope you get to the bottom of it soon. Let us know what you find out.
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