I have been reading this forum for a week since I got the results of my son's sleep study.  I feel like I could use some personalized advice.

Here are the results of his polysomnography:

Sleep latency: 9 mins.  Sleep efficiency: 96%.
Sleep distribution:
Stage Wake: 15 mins, 4 %
Stage 1: 2.4%
Stage 2: 79.1%
Stage 3: 9.3%
Stage 4: 0
Stage REM: 9.2
REM sleep was midly delayed with latency of 153min.
A total of 527 respiratory events occurred. The included 3 central apneas, 307 OAs and 217 hypoapneas.  AHI:  84.3  
Obstructive events occured in all sleep positions.
AHI during REM sleep 120.00.
Basline waking O2 96%. Base line sleep 92%.  OBstructive events were associated with episodes of  mild, moderate, and serve O2 desaturation.  The nadir was 77% saturation.

Early this week he had another sleep study for titration purposes.  Have not received the results.  But from my son's point of view it did not go well.  He's position is that he slept fine before, but can't sleep with the mask on.  He has a deviated septum and can only breath out of one side of his nose and is used to breathing primarily through his mouth.  The attendant can in with a chin strap which made it even harder for him to sleep.

ENT wants to do a tonsilectomy and uvlaectomy.  All docs agree his tonsils are huge.  

I'm looking for any insight/advice possible.  Am starting to feel overwhelmed.  Both my son and husband are leaving all decisions on care up to me.  
Thanks.

I feel for you and your son...if I were you....I would get him in for a T&A ASAP.  It can correct a lot of the sinus issues that come along with huge tonsils...and a deviated septum....and who knows..his adenoids could be like my son's and blocking 80% of his airway!   Once they are removed....see how he does and have a follow up polysomnography in a few months.  I think you'll see a big difference.
That seems to be the gold standard.  C-pap is a last resort after T&A.  I am not a Dr. though....so just my opinion!

My 18 year old son has horrible sleep too...he goes for a visit to our family Dr. on Tuesday.  he ginds his teeth and does not sleep well at night... and is absolutely obliterated all day long.  You think....typical teenager behavior....but if there are underlying physiological causes to these patterns, I want to get him help!

I have narcolepsy...and my husband and 8 year old son both have apnea....and sleep disorders run in families....so be aware of that too!  

My sleep study showed 0% deep level 4 sleep as well....I wonder how I would feel if I actually had deep sleep at night....I am on meds to keep my awake during the day...otherwise I conk out in dangerous places.  

Did your son have a MSLT the next day after his sleep study?  This is the one where they make him take scheduled naps during the day.  This is how they screen for Excessive Daytime Sleepiness/ Narcolepsy.

Good Luck!
Amy

[quote="tmom"]Early this week he had another sleep study for titration purposes.  Have not received the results.  But from my son's point of view it did not go well.  He's position is that he slept fine before, but can't sleep with the mask on.  He has a deviated septum and can only breath out of one side of his nose and is used to breathing primarily through his mouth.  The attendant can in with a chin strap which made it even harder for him to sleep.

forgot to ask...
Was he wearing a full face mask or just a nasal mask??  With a full face mask, he would've been free to breathe however he is most comfortable....but with the nasal pillows or nasal mask....you HAVE to breath through the nose....I am hoping that since he can only breathe through one side of his nose....that they did not torture him with a nasal mask!!       Mouth breath-ers need a full face mask.

My son's adnoids were removed years ago due to frequent sinus infections.  It really did the trick.  I am really wondering if the uvulectomy is a good idea? Anyone have experience with this?  Also I am really concerned about the drop in his O2 saturation.  What exactly does this mean and what are the effects?

I was very excited with the initial diagnosis becuase I've always been concerned by his lack of motivation and energy.  The hope of solving these issues in life throught sleep apnea treatment is wonderful.  But it seems to me now this will be a long road and I don't want to make major mistakes when it comes to surgery.

The full masks sounds like a good idea.  I know nothing about masks or machines at this point.

ok...did you know that adenoids can grow back?  It happened to my 8 year old son who has sleep apnea.  he had a T&A at age 3 due to enlarged tonsils/adenoids blocking his airway....4 years later I notice that he is still so tired and he talks too raspy for a typical child.  Sure enough...back to the ENT we go to get an x-ray which shows his adenoids grew back and were blocking 80% of his little airway.  The ENT (from CHOP) said that it is rare for the adenoid tissue to grow back....but definitely possible.

this helped the sinuses tremendously...BUT he was still waking up like a bear out of hibernation every morning....so we had a sleep study which revealed apnea.  He will be getting his c-pap machine hopefully this next week.

have you had an xray done to see if the adenoids have grown back?  if your son's tonsils are huge....they should come out anyway...especially with a dx of severe sleep apnea.

there is a place on this website that talks about the different mask choices...it's on the home page...not the message boards.  

amy

i know nothing about a uvulectomy....can't help you there...but try typing it in Google and see what comes up.

central apnea but will not cooperate w/sleeo study
 My son has probably had apnea all his life but the daytime fatigue / sleepiness became disabling during late adolescence.  He has multiple disabilities:  cerebellar cognitive affective syndrome (unable to walk, talk and has characteristics of autism as well as severe intellectual disability).  I'm sure he will not cooperate w/having wires on him, but also would not tolerate a CPAP.  Insurance pays for only one sleep study per lifetime.  He also has insomnia and will not sleep longer than 1 1/2 hrs if he's not been medicated.  

The sleep specialist said they will let him take his med to sleep (in years past this was refused) but I think we'd be very fortunate to keep the electrodes on for an hour (2 hours if I think positive and hold his arms down---which of course would keep him awake).

So, the doc has always said not to bother w/the study, but he will not treat w/out it to diagnose.  So, where does that leave us?  He is basically bed-ridden now simply due to his fatigue.  

I don't think his apnea is constant thru the night.  The times when I observe it have always been wee hours of the morning--like between 2-4 a.m.  I have observed and counted breaths for 20 minutes at a time.  He used to go 10-20 secs between breaths, but by 17 years was going 20-33 secs between, and a couple months ago (age 23) he went up to 50 secs between breaths for a period of 5 minutes.  The other 15 minutes of breathing had 20-35 secs pauses between breaths.  After 20 minutes, the pauses shorten to 10-20 sec, and then go back to 3-5 secs.

The above sleep specialist told me that 35+ episodes per hour is considered 'severe' and that usually the person's apnea occurs thru-out the nite.  I forgot to ask if the episodes are averaged over the time the person sleeps, but I presume so.  This last count comes out to about 45 episodes per hour, but like I said it doesn't go on all nite.  It might occur again, but is not constant (I don't sit counting breaths all nite long).

Does anybody have any insights for me re whether this sounds like 'severe' apnea and about whether doing the sleep study would be valuable if we only get an hours worth of sleep?  

Does this sleep pattern, even if it occurs only once/night sound like it's enough to cause the extreme daytime fatigue/sleepiness?

Does anybody know about an associattion between apnea & adolescence?  would hormone changes cause central apnea to worsen?

Doctors have always just shrugged their shoulders, or said "hum"; probably hormones".  That's about as far as we've gotten.  He takes trazadone to get to sleep.

anyway am hoping somebody w/more experience can give me some feedback.

Why could they not put all the stuff on after he is asleep?  I know that is not typically done.  However for a child with that level of disability one would think that they would be able to come up with something.

tmom:

my son't uvula is slightly larger than normal; i've read that the disadvantages to surgery is that in some people the removal results in difficulty w/some speech sounds (such as "k", "g", "h") and also in some there may be trouble w/choking on food.  Maybe one thing for you to weigh is how much larger your son's is----how much it may be contributing to the apnea.   Good luck w/your decision, and with your son's health.

Jennmary:

thanks for responding; the sleep doc said no when I asked about that.  (I do know of an infant young child that was done w/though; they continued the study after the child woke in order to have some wake time).  This guy seems pretty set in his ways.  He used to refuse to let patients take sleep meds, but finally realized if they never sleep w/out it then testing w/the med is actually the most relevant thing to do.  Maybe I can wear him down on this too....However, my son wakes easily and has difficulty going back to sleep so I'm not sure that's a great solution either.

Embryopathy-
I have a few ideas that may or may not help. There are some less invasive measures to help your son's doctors figure out what is going on with his sleep. One thing you might be able to do is to videotape your son's sleep. A second at-home measure is to use a recording pulse oximeter. This is a device that clamps softly on the end of a finger and is used to measure the level of oxygen in the blood. Drops in the blood oxygen level during sleep are one of the measures of apnea and the amount of decrease is one measure of physical severity. You might want to talk with your doctor about trying these two measures. It may be that they would help your son's doctors figure out where to go next. It may be that you might want to discuss the possible use of a stronger sedative to geet a formal sleep study accomplished. Normally I think this is not considered to be a good idea, but in some cases I would think it could be useful and this might be one of them (let me stress however that I am not a doctor or medical professional).

The other point you raise is also worth considering and that is the likelihood that your son will not tolerate a CPAP or similar device. CPAP is generally considered to be the treatment of choice for obstructive apnea and a variation of CPAP is used for some people with central apnea or mixed apnea (mixed apnea features a combination of central and obstructive apnea). If your son will not tolerate such a device there are other measures, especially for central apnea that are used to help address apnea. If your son has obstructive apnea, it may be that helping him sleep on his side might help (often obstructive apnea is more frequent when you are sleeping on your back). Sometimes pillows or wedges can be used to help encourage side sleeping. Thee may be other ways of encouraging good positioning. Raising the head of your son's bed might help, especially if he has gastroesophageal reflux (which can trigger apnea events at times).

Oxygen is sometimes used for central apnea, even without CPAP, and, by itself, may be much easier to tolerate than CPAP would be. Even if your son has obstructive apnea, oxygen might help if he cannot tolerate CPAP (and this is where the use of a pulse oximeter might help decide whether this is a good idea). There are also some medications that are sometimes used, especially for central apnea. These would all be measures to discuss with your son's doctors.

In a case like yours, I think it is useful to try to focus on what can be done rather than what cannot.

I hope these ideas are of some help.

Best wishes to you and your son,
Bill

thanks for your reply several months ago!  
since that time he has had 2 overnight oxometry tests and tried oxygen w/a nostril cannula.
We are still trying to get a sleep study.

I've had major problems communicating w/this pulmonologist.  I finally rec'd a copy of the first oxymetry (done in sept) but had to call (again) re: a copy of the 2nd one done in oct.  The dr. said the oxometry does not indicate enough desats to make him tired during the day or to suggest apnea.  (I know...an oxometry does not diagnose apnea so I got her to agree to a sleep study---I phoned a children's hospital and they are willing to wait till he's asleep to put the wires on and willing to work w/him all nite re: putting them back on when he pulls them off).  However, after waiting 2 weeks, I phoned the sleep lab and they say they never rec'd the referral.  The dr. mailed me a copy of the faxed referral w/the first oxometry results---now I wonder if she meant to send it to the lab?  who knows, like I say I have had major problems w/this office.  So, last week I phoned the internist and asked if he would do the referral instead because I really don't want to deal w/this pulmonolist anymore. ... guess i'll have to call again tomorrow.

Anyway......the first oxometry shows a couple brief desats to 87 and one to 77.  However, the sum of these 3 separate episodes was something like 12 secs.  We tried the oxygen anyway, but he would not tolerate it in his nose.    I know the 2nd oxometry showed only 12 secs of desat and 88 was the lowest and the DME company said insurance will not pay for oxygen unless there is a desat to 88 for at least 5 min.  (that's more info than i got from the dr. in 2 months!)

Looking at the first report that I finally rec'd though, I saw that during the 6 hrs of sleep, there was a total of 1 1/2hr that he experienced desats to 88 or below.  Don't they take that into consideration?  (His baseline O2 was 98)

just thought I'd see if you have any input on this.
thanks