My four year old was diagnosed this week with Central Apnea
Today my daughter who just turned 4 was diagnosed with central apnea. Her ENT who requested the sleep study 3 wks ago has referred her to a Pediatric Neurologist. I am curious about what to expect when we see the PN at the end of next month. You seem so knowleadgeable and was hoping you could help me. I am a little concerned, not overly at this point, because I don't have any idea what I might be facing at this point. But some of my anxiety may be put to rest if I can at least know what to expect vs. the unexpected.
I am also concerned in what to do with her in the meantime. Her results stated that her Oxygen saturation levels dropped as low as 81%. Is there something I need to do to help her. I am ever more concerned right now that she has an upper respiratory virus of some kind (just got it this week). I would imagine that could decrease those levels in lower.
What specific data do you need sleepydave? Thanks again!
Hi erikacole!
Be glad to try to help you. Post all the details of the sleep study as well as any other pertinent medical history and medications. Since central apnea in children is not very common, what kind of a working diagnosis have the physicians given to you so far? Check back.
sleepydave
thanks sleepydave. I really could use the help. What sort of information is pertinent for you? I am sorry but all of this is so new to me. I am wanting to learn and educate myself.
I have a summary of her report.
What does a working evaluation mean? All I know at this point is that she had 12 apnea episodes in the time she was sleeping, the 6.5 hrs (I don't think that is severe is it? Definitely not normal, but is it something very severe or extreme?). Out of those 12 episodes, 11 were central apnea epsidoes.
At this point they are sending us to a pediatric neurologist, we actually have an appointment with him on Monday.
We are totally shocked. I really thought I was crazy when I suggested to her pediatrician that she was pausing breathes during sleep. I finally convinced her and was certain that out ENT Specialist would tell us that I was nuts and that she was perfectly healthy. If ANYTHING I expected OSA, no way at all Central. I am trying to do some research to learn about it, but not finding much at all.
Please let me know what information you need so that I can supply it to you.
The bottom line is, central apnea in children is usually quite normal. Some people will call central apneas up to 20 seconds normal (personally, I think that's pushing it). How long were these centrals? Can you find out if they were post-arousal? Were they in REM or non-REM?
Central apnea can also really be obstructive apnea in disguise. Simply not picked up by the sensors properly.
The oxygen desaturation to 81% can be a little worrisome. How many total desaturations were there? Can you get the graphs for oxygen desaturation? They might be artifact, hafta look at the actual PSG to make that decision, such as in the examples in the link. Might get a clue based on the info you can get, tho.
Out of curiosity, what was the other apnea, a mixed or an obstructive?
A working diagnosis is what the physician might think the underlying disease could be. Or was it simply, "since there are 11 central apneas, better get a follow-up?"
Stay close.
sleepydave
Thanks again. I am currently at work and don't have the results they gave me on hand. But I will post them this weekend.
Quote:
Out of curiosity, what was the other apnea, a mixed or an obstructive?
What I do remember is that out of the 12 episodes, 11 were central and one was obstructive. They all mainly occured during REM sleep, what does that mean. I know that what REM sleep is, but why would most of her episodes occur then? As far as post arousal, I THINK that is on the report, what does that mean anyways? It doesn't say how long those centrals were.
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Central apnea can also really be obstructive apnea in disguise. Simply not picked up by the sensors properly.
What could be obstructing, her ENT looked at her tonsils, says there are still midsize....
Quote:
Can you get the graphs for oxygen desaturation?
All the report says is that her levels got as low as 81%. How do I request the graphs you are asking me about? Do I call the lab or her Dr. and how likely will they be to give them to me?
[quote] A working diagnosis is what the physician might think the underlying disease could be. Or was it simply, "since there are 11 central apneas, better get a follow-up?"
Quote:
That is pretty much what her ENT said. He said that he had to send us to a neurologist to rule out any connections with the central system. And if they didn't find anything, then we would see him again and talk about possible surgery....does that sound accurate?
Thanks again a million sleepydave, you are the best information I have found on the entire internet, and you respond!!! THANK YOU!!!!
Hi erika:
Hmmm, mostly REM centrals?
First, REM centrals are very common in children. Lemme put that example up from the other post:
And a post-arousal central comes from a brief period of hyperventilation, maybe even just a couple of breaths, and is simply a compensatory pause cause the body doesn't need another breath for a few seconds:
And again, some folks will allow up to 20 seconds for a central and still be normal.
The other thing is the quantity. If you've got something that causes central apneas, you gonna get dozens or even hundreds. Not 11.
And oh yeah, obstructive apnea is pretty much always worse in REM. See where we're going here?
Tonsil size is not necessarily a slam dunk, and all this still follows, because if these turn out to be obstructive apneas, you've still only got an AHI of about 1.5 or so. Surgical threshold varies, we use about 3.0, some folks will use 1.0. It's based on a few things...
...one of which is the low desaturation level. We're still stuck with that. 81% in a kid is probably gonna be the deal breaker in this case, so that's why you've got to look at this very closely. And again, the total number. If it's one, and that occurred after a major motion, it could be artifact. If all 12 apneas have desats, then that's something else.
BTW, another thing would be the carbon dioxide level, ETCO2, see if you can dig that up, too.
The sats need to looked at directly in the waveforms, like the examples that I have posted. Cause see, the problem is, there's the raw data, scored by a technician, interpreting MD reviews tech notes, ENT reviews MD notes, you get summary from ENT, and then you post as much as you can remember, so stuff can go askew at any point.
So while this sounds very promising at this point, somebody has to go all the way back and review these events directly, carefully, cause they are the ones that the decisions will be based.
Anyway, while we might not be ready to make any calls yet, hopefully this will give you some idea on what questions to ask.
sleepydave
Sleepydave, you are such are wonderful! I am supposed to get a copy of the study tomorrow when we meet with the pediatric neurologist. I will be able to share more in detail information with you after that.
I thought I would type what the interpretation was at the end of the summative report:
Interpretation: The findings indicate evidense for a sleep-ralated breathing disorder with primarily central apneas and one obstructive hypopnea. These were asociated with significant oxygen desaturations, typically to the mid to low 80s. This pattern of respiratory disturbance may be observed in obstructive sleep apnea, however clinical correlation is recommended. Concurrent supine and REM sleep were recorded for a brief period of time.
What kind of questions do you recommend I ask the neurologist tomorrow? I want to go in prepared and would appreciate any help you can give me.
Hi Erika:
Well, just review the things that we've covered so far. If the neurologist says they're obstructive and not truly central, then it's back to the ENT again. I see now we're talking about desaturations, so maybe there's less chance of it being artifact, and the surgical option starts to move a little forward. Good luck tomorrow.
sleepydave
hello
my son is 15 months and has just been diagnosed with central sleep apnoea, he is under a PN due to seizures he was having, and she said the nxt step for the apnoea is to have a MRI we r currently waiting for taht app to come through, they also said matthew will have a sleep EEG also and another sleep study
matthew didnt have to many decreases in saturation if he did they would correct them self pretty quickly
i hope the app goes well for u at the end of the month
sleepy dave....I feel so incredibly ignorant for someone with a graduate degree! What do you mean by it being "artifact"? Do you mean human error during the study? Please clear me up on this.
Also, do you think that the neurologist will be able to tell if they were Central vs. Obstructive? I guess I am a little confused as to who is going to figure that out, is it the ENT, the neurologist or the sleep techs?
I REALLY am looking forward to our appointment at Vanderbilt today at 4pm. I will definitely check in with you and let you know how it goes :)
Thanks again a million, you have been such a help to me. I just can't thank you enough. God bless,
Erika
Hi erika:
Sorry I missed you, had to work.
Anyway, when a patient moves in the bed, the signals, which are highly amplified, go absolutely crazy, and generate erroneous data, or "junk". This is artifact.
The oxygen signal may drop during this time. So if the drop occurs during a period of patient movement, it might be artifact. Or if the patient is sleeping on their arm. It has to be examined closely to determine this. And in the case where there's only one or a very few desaturations, and the decision to go to surgery could be based on that, you have to be pretty sure the signal is valid.
In re: who can differentiate central vs. obstructive, sometimes the most seasoned eye cannot differentiate between a purely central and an obstructive apnea in a child. The clinical history and surrounding data in the PSG must be examined. But again the few number of events and their existence in mostly REM makes them lean towards either being normal phenomenon or obstructive in nature. And we're back to the desaturation thing. BTW, did you get end tidal carbon dioxide (ETCO2) measurements? That would also help sort things out.
Hope you made out OK yesterday.
sleepydave
We had a good visit yesterday. We liked the neurologist and he took OVER an hour talking to us and taking history and asking tons of questions and taking notes, etc. He even gave her a neurological series of tests all which she passed with flying colors.
At the end of the appointment his recommendations based on what he learned from us during the hour visit was to hold still for the moment. He says he just looked at the apnea episodes and didn't have a chance to really dive into the sleep study in terms of when her oxygen levels dropped, what was going on at that time, etc. He thinks that we need to see him in 6 months and touch base with him to let him know how things are going, if I am noticing apnea episodes or if she seems to be outgrowing them. Many of her SA symptoms are going away (bedwetting, midnight wakings,weight gain, snoring), or they have really minimized in the last month.
He is supposed to call me tomorrow and let me know for certain about how to address and if we will address the desaturations.
I asked what her AHI was and he said it was 1.8. He gave me the spill on how some think 1 is enough to qualify for surgery, and other go as far as 5. He seemed to be leaning more towards the 5 mark.
I am not wanting to run into surgery at all, but I am concerned if he is only relying on me for seeing if she has apnea episodes. I dont' think I am very reliable as the only indicator. I am still concerned about her desaturations, but if he looks at them and sees that they are happening at the time she is moving around or something then I have no concern. My concern would remain if he sees that those desaturations occur out of the blue during the night. He did say that the main reason he doesn't feel we need to rush into anything was that there was a time period during those 6 hours of almost 2 where there was no apnea at all and her breathing was very normal. So I guess we will see.
I did not get the EOC readings. They are supposedly mailing me something about the study. Not sure if it will be the whole study or what....the whole study is pages and pages long isisn't it?
Thanks a ton once again, I appreciate your help more than I can ever let you know.
What is your opinion on what was mentioned above?
I am supposed to be getting a call from him in a couple of days, can you think of any questions that I didn't ask that should be asked, after all you are more experienced at this than I am.
Hi erika:
Well, sounds like things are going pretty good.
Woulda been nice to get a better call if they're really normal centrals or obstructive, but that's OK, we're not talking a big number here.
Yeah, it'll be good to get a ruling on the desats.
Lemme know when you get the other stuff. Elevated ETCO2 levels, when present, can push the issue, but that they weren't mentioned suggests they were normal or weren't done (you really should do them in kids, however).
Stay in touch.
sleepydave
Hey Sleepydave. I have yet to hear back from the Dr. We went over a week ago and he was supposed to touch base with us. So, I e-mailed him this morning with a list of questions. Here is what I posted:
Good morning Dr. C.
I am writing this e-mail to make contact with you and see if you have had a chance to check my daughter, XXXX sleep study results in more detail.
Just a quick reminder of who XXXX is. We saw you last week (10/24) per request from Dr. W. XXXX had a sleep study on 9/23. When we went to see Dr. W on 10/17, he said that the results were that she did have Sleep Apnea, and it appeared to be Central. Thus the referral to you.
During our appointment on 10/24 with you, we discussed the results. Your feeling at the time was to do nothing, just keep an eye on her and her current situation and come back in 6 months to touch base and see if anything had changed. You also said that you would look at the sleep study a little closer to see when her apnea episodes were occurring and then get back to us with a more conclusive recommendation.
I gave you all the above information, because I know you see MANY patients :), but I hope that it helps remind you who XXX is.
I just have a few questions that I should have asked during the appointment, and I apologize for using this format in which to do so.
1) Out of her 12 apnea episodes, 11 were deemed as being central and one as hypopnea. How do we get a better call on if those episodes were true central episodes or if they are masked as such, and are really obstructive?
2) During these apnea episodes how many seconds are we talking about? I have no idea if they were recorded as being 5 seconds, 10 or less. What was her longest? What was her shortest?
3) My main concern is her desaturation levels. When were her desats occurring and is there a possibility that they are artifact? Could all of them have been artifact? If her oxygen level baseline was 97%, isn't a desaturation of 81% a bad thing? How many desaturations occurred amd what her levels?
4) Were elevated ETCO2 levels checked? Were they normal? Were they elevated?
5) You indicated that her AHI is 1.8. Were her desaturations part of the equation? I know you mentioned that they are independent of each other, but that they still have an effect on her AHI. After studying her sleep study results closer, is her AHI still only 1.8?
Can you think of anything else I should have asked?
Hi Erika:
Yeah, that's pretty good, although in number 5, you mentioned that the desats and AHI are independent? If we're talking strictly OSA or even CSA, that's not true, they are cause and effect. If those desats were out in the middle of nowhere, and/or after a significant body movement, that pushes the artifact thing again.
But you got all the important points, hope things work out.
sleepydave
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