Sleepydave--Thanks again and in advance. I finally got my answers from the neurologist today via e-mail. Tell me what you think....just a reminder here are the questions I asked and then the answer he provided:

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?


In J's case, there appeared to be a few central apnea episodes that occured during times when they would be expected.  However, there were several(occurring predominantly during REM, or dream sleep), that appeared "out of the lue," lasting 10-15 seconds in duration, and were associated at timew with significant oxygen desaturations (at times >5% points).  It is very possible that these latter spells may be manifestation of sleep apnea.




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?

The majority of the apneas observed ranged approximately 10-20 seconds in duration.





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?


The vast majority of the observed desaturations observed occurred following a respiratory event (apnea or hypopnea) – almost all of them appeared to be “realâ€� (they did not appear to be secondary to an artifact).  A “significantâ€� desaturation is scored if the oxygen level drops by at least 3% - a total of desaturation episodes were found – 5 of them occurring within the 90-100% saturation range, 5 within the 80-89% range, and 1 within the 70-79% range (which was an artifact).

What I was impressed by reviewing the study were several oxygen desaturations that were greater than 5% points (associated with an apnea event) – for example, there is one episode where she will be doing okay while at an oxygen level of 95%, then following an apnea event her oxygen would reach a minimum of 82%.




4) Were elevated ETCO2 levels checked? Were they normal? Were they elevated?

Our laboratory is presently not set up to routine monitor EtCO2 levels.



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?  

Her AHI (apnea-hypopnea index) is based strictly on the number of apnea and hypopnea episodes.  Going back a step, these respiratory episodes are scored based on whether they result in an awakening/arousal or an oxygen desaturation.  So in answer to your question, the number of desaturation events can influence (but does not directly alter) the AHI (which in her case was 1.8).


In summary, after reviewing her study, I would argue that the central apneas observed throughout the study may actually represent manifestations of underlying sleep apnea.  Given the frequency of these episodes (with consequent oxygen desaturations), I would also argue that tonsillectomy and adenoidectomy may be a consideration.  I cannot state with certainty, however, whether Julianna’s central apneas would be responsive to surgery.  You mentioned during her recent clinic visit that her symptoms have actually been improving since this past summer – it is possible that the frequency of her apneas/hypopneas were also correspondingly increased during that time (but obviously, there is no way to know this for sure in the form of a sleep study).  Watchful waiting is an alternative (particularly as she continues with Singulair therapy, which can help not only in treatment of her allergies, but also exert an “anti-inflammationâ€� effect on her tonsils and adenoids (with consequent “shrinkingâ€� of those structures).  However, as she was having several respiratory events with desaturations in the setting of appearing “betterâ€� compared to previously, I think the surgical alternative may be helpful in Julianna’s situation.



+++++++++++++end of answers+++++++++++++++++++++++++


So tell me what he is saying! I know she has apnea, duh! But is he just not specifying what kind because the data is inconclusive?

Is he recommending the surgery?

What is your take on all this?

Thanks again Sleepydave!

Erika

Hi Erika:
Well, actually, this is pretty much in keeping with everything we talked about so far.  The apneas have close correlation with the desats, so that makes them significant.
Making a surgical call at AHI <3.0 is tough, it's not surprising he's on the fence.
Two things trouble me.  Not doing ETCO2 on a 4 year old, but that's water under the bridge.
And also, all the apnea durations are 10, 15, 20 seconds.  Ask them what their criteria to score an apnea are.  For a child, it's missing 2 breaths.  That means an apnea could be like 6 seconds.  If they say their criteria is 10 seconds (adult criteria) then tell them to go back and score using the 2 breath criteria.  Then let's see what we've got.
sleepydave

Thanks again and again and again sleepydave!

When I started to type the post to you yesterday, I started by just typing his reply, but then finally got smart and copied and pasted. But in doing that typing at first I left out the other half to his answer which is what you asked:

The majority of the apneas observed ranged approximately 10-20 seconds in duration.  (The minimum duration for purposes of “scoringâ€� a respiratory event is the average time of two consecutive breaths.)

I don't understand why you ask this and what it means though.....what do you think?

What do I do about him being on the fence. I don't want to tip him over, but I do want his medical direction, kwim?

Bless you sleepydave.
Erika

Hi Erika:
If they had been using adult criteria, then there may have been a whole lot more respiratory events, the AHI would have been higher, and the surgical decision may have been more straightforward.

At least everybody who has chimed in here is on the same page and saying pretty much the same thing.  AHI <3.0 is marginal as far as surgery goes, but the low oxygen saturation gives the surgical option additional consideration.

You could make a case either way, but in the end, the final decision rests with her mother.
sleepydave

Hi SleepyDave....long time since we have 'chatted'.

I wanted to touch base with you and once again get your expertise opinion.  I got a call from the neurologist today on what the next step should be. He has given me two options:

1) Redo a sleep study to see what we are dealing with again. He wants to make sure that we are getting an acurate 'snapshot' of what her nights are like. Then discuss the results of the study and go from there.

2) Send us on to the ENT. Let him do some probing and check to see if her adnoids/tonsils are really a large enough problem to warrant surgery. Still not sure if the surgery will help her apnea or not.

What do you think of either option? My daughter's apnea symptoms are slowly but surely coming back (bedwetting, snoring, etc.). So I want to get this ball rolling.

Thanks again a million. I am going to discuss our options with DH tonight and then am supposed to call the neurologist tomorrow, and let him know our decision.  I would love to get your imput before making a final decision. You have been such a help to us and we are at this point, thanks to your knowledge and advice.  I appreciate you Sleepydave.

Erika

Hi Erika:
Well, if money's no object, I'd do both.  But in the sleep study, I'd really try to get ETCO2 values.  Elevated ETCO2 levels alone can be the justification for surgery, as shown in this case study:

ETCO2 and Surgery

However, not all OSA, even in children, may respond to surgery, so the ENT evaluation is of equal importance.

If the results of the sleep study show a worsening of the condition, that should also help in the decision making process.

Right now, all info is helpful info.
sleepydave

Money is not part of our decision. We need to do what is right for her. I am not going to say that bills won't hurt, but she is lots more important.

We also want to do both. First we are thinking of doing the sleep study and then meeting with the ENT and see what he thinks.  But definitely another sleep study.

I will e-mail him today, do you mind if I share the information you gave me?  Please let me know, I don't want to share information without your permission.

I am still trying to understand the importance of the EtCO levels. In the case study that you shared with me, am I understanding that the patient seemed somewhat normal. Her tonsils and adnoids nothing out of the ordinary. But the EtCO levels were high and therefore evidence of alveolar hypoventilation syndrome? All thanks to the EtCO levels, where if they had gone undetected, there might not have been surgery as seen by the study?

Still grasping this around my little head! Dave you are such a help.

Hi Erika:
Sure, if you think anything here may be helpful, by all means, help yourself.
Measuring ETCO2 levels, in some cases, can be quite a sensitive measure of respiratory function, and there are some guidelines as to when you would act, as noted in the case study.
Say, out of curiosity, check to see if they use "pressure transducers" to measure oro-nasal airflow.  They should, but it don't hurt to ask.  They're a little more sensitive as well.  It records through a nasal cannula (as does ETCO2, so sometimes you have to make some allowances).  Just wondering about the setup.
sleepydave

Hey Sleepydave.  There seems to have been a change of plans.

When I spoke to the neurologist Monday, and he gave me the two options (#1 redo the sleep study and see if it was really a true picture of how she sleeps and breathes or #2 meet with the ENT and discuss removal of tonsils and adnoids). DH and I were about to call him to tell him we wanted to go with the sleep study again. Then to our suprise they called us Tuesday and told us that we had an appointment with the ENT. I was confused about the appointment, because I never scheduled one, so I called and talked to his nurse. It turns out the ENT and the Neurologist got together and confered on my daughters case--Hallelujiah!!! After much discussion they feel they should go for the surgery.  So we went Thursday and met with the ENT. They will be doing surgery this coming Wednesday. We will be at Vanderbilt's children's hospital. They will keep her overnight (with her history of apnea).

Then 6 wks after her surgery and once she has recovered, they will do a repeat sleep study to see if the apnea is gone or if it is truly central apnea.

What do you think? This seems to finally be happening, and quickly.

What is your opinion/imput?

Thanks Sleepydave.

Hi Erika:
Well, it sounds like you have a pretty good consensus.  Good luck to you, and make sure you report back in!
sleepydave

  Hi SleepyDave!

My J. had her surgery (tonsillectomy and adnoidectomy) on 12/21 @ Vanderbilt Children's hospital. ENT said her tonsills were a bit large but that her adnoids were huge. (Why couldn't they have figured that out already? Is there an x-ray or another type of diagnostic test that would have established that previous to taking them out?)

Anyways, she did great. Recovery was a bit rough, they kept us in recovery for more than 6 hours, then were transfered to a room for overnight observation. She was throwing up a long time and her oxygen levels would drop in the low 80's when she didn't have the oxygen mask on.  After a rough night, she had a great morning and even ate breakfast--solids at that!

Her sleeping since the surgery has been AMAZING!!! She is so quiet when she sleeps. She is not in so many wild positions and I haven't hear any snoring (since the 1st week after surgery). She is sooooo quiet and peaceful! Her midnight wakings have decreased if exist at all. And her bedwetting is HUGELY improved (only 1 incident in 17 nights).  What has also amazed me is her profuse sweating. She used to sweat tremendously, now no sweating during sleep. I can hardly believe it. Still trying to figure out how the sweating correlated, but am grateful that that is no longer a concern. The most thrilling of all is that I don't hear anymore apnea.

We went for a post surgery check-up a couple of weeks ago. The ENT feels that if this is how much she has improved that we don't have a need for another sleep study. He could tell that I was just a little hessitant to let it all go that easily (considering that the sleep study results showed Central Apnea), well he got a litttle huffy and said "If you want to waste time and money, we can order another sleep study", and I responded "Time and money are of no concern to me, what I am concerned about is that she is healed. I will give this some time a month or two and if I have ANY reason to suspect that she still has the apnea, then I will without a doubt be calling you again."  

I don't want her to have to go through all the sleep study stuff again, but on the other hand I want to make sure without a doubt that she is ok.  So as much as I hate it, I am going to have to be the only indicator of her apnea at this point. But I will be praying for wisdom and discernement (which is how I first diagnosed it last year, it was a God-thing). She seems fine, actually she is seems better than fine, she seems healed :)


You dont know how much I appreciate you and ALL the help you gave me through education. I think education is such an effective weapon with disease. I also believe we should be our own advocates, if we happen to get the Drs. on our side then great, but no one is going to look out better for you than yourself.  You were GREAT help. Thank you so much for your patience and responses. I have no doubt that God sent you my way. There is no way I found this site by chance.

You are the best! Thanks!

Erika

Hi erika:
Thanks for the follow-up and your kind comments.  You need a congratulations yourself for your persistence in making this whole thing happen.
sleepydave

Hey SleepyDave, its been a WHOLE two months! How are you?!

Well I am confused and dissapointed.  My daughter seemed to be doing fantastic. The snoring, mid night wakings and enurisis was gone!

Then a couple of weeks ago she started with the enurisis again. THen I noticed her snoring very hard the other night.

I took her to the ped this past Friday because she complained about an ear hurting. Turns out she has a double ear infection. When her ped looked at her she said that her throat was very swollen, it was due to a viral infection.  She said that if the snoring and the bedwetting continues to call my ENT and have him see what he says about her throat being swollen.

Ok, is it normal to have a swollen throat eventhough she doesn't have tonsils and adnoids? Wasn't the tonsillectomy and adnoidectomy supposed to help diminish that?

What do you think the ENT will tell me to do?

I am supposed to give my daughter about a week to see if the snoring and enurisis episodes decrease. It will be a week on Friday. Any help on your part would be greatly appreciated. I feel like pounding my head against the wall!

Thanks in advance,
Erika

Hi erika:
OK, a setback, gotta deal with it, but this may be as simple as involving a bit of waiting.

Let that stuff settle down before you start planning your next step.
sleepydave

I recently took my son to a pediatric sleep disorder specialist because we were concerned that he might have sleep apnea.  He had the symptoms and a strong family history of OSA on both sides.  

When they did the sleep study, they found that he had 61 episodes during a 7.5 hour period with obstructive as well as central apnea. (I don't have the report here to get the breakdown on numbers of each)  We have an appt. with an ENT next week, and expect they will take at least his tonsils which are at a 3+, and maybe his adenoids.  

However, I am getting more and more concerned because of articles I've read on Central Apnea linking it to any number of possibly severe neurological disorders - (ie. Arnold Chiari Syndrome, etc.)   One report I just read said that "central apnea does not appear in children that are otherwise normal".  My son has never had any other neurological issues and has always appeared to be "otherwise normal".  

I'm trying VERY hard to remain as calm as possible, but it is getting harder to do.  Is it possible that the central apnea will disappear once the obstructive apnea is taken care of?

Thanks in advance for any advice you can give me,
          Lisa