Hi, everyone.
I am looking for help for my 15-year-old daughter ("L") who was diagnosed in 2002 with central sleep apnea. Although our pediatrician assures us she is otherwise healthy, L feels horrible most days and goes through life in an haze of exhaustion.  She also has problems with acid reflux, which gives her daily stomach aches and a fear of lying down, which doesn't help with catching up on sleep.  We have been to lots of doctors over the years (3 different ear-nose-throat docs, 3 different gastroenterologists, 2 neurologists, and an allergist, besides our pediatrician) and have had so many tests done (CT of the head, 2 MRI's of the head, an MRA, an EEG, 2 overnight polysomnograms, 2 home-based "sleep shirt" type studies, upper GI x-ray, upper GI endoscopy, allergy skin testing), but we have not found relief for her problems.  Except for the sleep studies, which showed central apnea, the tests have been negative or largely so.  On the sleep studies, L's breathing slowed to 4 breaths per minute with the longest apnea event being 27 seconds.  Her oxygen saturation did not drop alarmingly - only to 92% -- but she did have arousal or partial arousal that kept her from achieving deep levels of sleep.  

We tried CPAP during an overnight sleep study in 2004 but it did not go very well -- the mask and air pressure made L feel claustrophobic and panicky, so she only slept about 45 minutes.  She did not have any central apneas during that time, but it is not long enough to be conclusive of anything.  

L is fed up with doctors, hospitals, and tests and believes there is nobody who can help her.  I would like to get another sleep study done with another trial of BiPAP, and I would like to have a modified barium swallow study done, but it is hard to get L to buy in, and once I get her to agree, it takes months to get referrals and tests scheduled. (OK, I'm letting a little of my own frustration show, too!)

Other curious or troubling symptoms include frequent urination at night (2-5 times a night), muscle and joint aches, difficulty swallowing (food gets stuck partway down or gets tossed up into the back of her nasal passage), and intermittent crossed eyes (is she literally "too tired to see straight"?).  She has headaches and dizziness upon awakening nearly every morning.  She has a history of scary migraines with numbness/paralysis of hand, foot, face and tongue -- but we know what these are now and can treat them when they come.  (She has maybe 2-3 of these a year now).  We are trying to teach her to drive, but she is terrified because she has read the articles that link sleep apnea with falling asleep at the wheel.  

L is despondent over all of these symptoms and the overall lack of energy she has for life.  We sought some counseling for her but she finds it hard to describe the problem and she feels very isolated.  Are there any other kids out there who are living with Central Apnea?  Does anybody have any suggestions as to where we can turn for help?  Seems like most doctors are unfamiliar with central apnea in kids -- one told us it is an "old man's disease."  

Thanks for any help or suggestions you can give us.

Hi Williebear,

Gosh, this is a lot for a 15-year-old to have to deal with!   It's hard enough just being a teenager!

Did any of these doctors want to prescribe a cpap machine for her?  That feeling of claustrophobia is common.  But there are different kinds of masks.  There is something called nasal pillows that some people think are great and less claustrophobic.  It all depends on whether or not she can handle breathing only through her nose during sleep.  Some people also breathe through their mouths and that limits you on what type of mask to use, although some people use a chin strap for that.  With that home sleep study, was she using a nose mask?  (not a full face mask, which covers both nose and mouth?)
This is a lot to deal with, for your daughter and for you.  Keep checking in here.  I'm sure there will be others with some suggestions.

One thought came to mind.  Is there a sleep study clinic near you?  Childhood sleep apnea is rare when compared to adult sleep apnea.  But perhaps they might know of some teenagers who might have been tested and later treated.  It's always good for someone to talk to others with the same condition.  As adults using this forum, we sure appreciate talking to others going through the same thing.  If they know of someone who recently was tested, perhaps the clinic could contact the family and see if their teenager might be interested in chatting about this with someone their own age.  Only a thought, but it might be worth looking into.  


Linda

Thanks for your reply, Linda, and for your good ideas.  The CPAP study we did in January of 2004 included a nose-only mask and a full-face mask.  She hated them both, but I understand now that this is common and she needs to work at getting used to the mask before we can find out if this is helpful or not.  She definitely does not breathe through her nose well (in fact, she plays the trumpet and her instructor once said, "You don't want to take your trumpet away from your mouth during this tricky section of music, so just breathe in through your nose" and L said "You can take a breath through your nose???")  Hence the visit to the allergist and some nasal steroids, saline sprays, etc.  

We will check on different types of masks as soon as we can get an appt at our sleep clinic.  I'll also check if they know of any other teens with this problem.  She feels pretty isolated in this issue and even has a hard time explaining it to her close friends.

One interesting thing that happened along the way for us is that L used to be a horrendous snorer, which is what led to the first sleep study back in 2002.  The study showed the problem was more central than obstructive, so the doctors did not want to take tonsils out or anything like that.  But she was legendary for snoring at sleepovers, at camp, etc. and SOOOO embarrassed about it.  In 2004, she got braces on her teeth and I asked the orthodontist what he thought about her airway, since he had those panoramic x-rays to look at.  I told him our whole story and he said "I could give her a palate expander along with her braces; she doesn't need it orthodontically, and I can't show you any studies to prove it could help, but people tell me they breathe better after having this done."  So, with little to lose, we did 3 months with a palate expanding device and she does not snore anymore!  I envision that expanding the hard palate had the effect of firming up the soft palate, which is the goal of many surgeries in this area.  It's a shame that MD's and dentists do not communicate more on the apnea issue; I think the dentists could do a lot of good for patients because they understand the mouth, head and neck.  

Thanks for your interest in this puzzling case!



Last edited by williebear on Wed Jul 20, 2005 8:56 am; edited 1 time in total

Hi williebear:
I agree with Linda, kids should not have to get stuck with stuff like this, but boy, it sounds like you got this thing by the throat and won't let go till it's conquered!
And again, this is obviously another very complex case, but let me offer a couple of thoughts:
1.  CPAP, for the most part, does not work on central apnea.  It works on obstructive apnea because the airway is splinted open and the respiratory effort is allowed to pass through the previously closed airway.  In central sleep apnea, there is no effort, so there's nothing to fix.
2.  However, we often try CPAP in what we think is central apnea because sometimes we simply cannot see the respiratory effort (or obstruction) with our sensors.  And if the apnea gets better, then there must be an obstructive component, and we're interested in results.
3.  And boy you gotta think obstructive whenever you see gastric reflux disease and apnea in the same sentence.
4.  If the snoring's gone, I'd go for another sleep study, you may have a significant change in the numbers.
5.  Speaking of numbers, do you have the Apnea and Arousal Indices from the other studies?  If the arousal index is only like 5 or less, that alone is usually not enough to explain that level of sleepiness, and you gotta start looking at other causes.
6.  Were end tidal carbon dioxide levels and esophogeal pH monitored during the study?  If not, do it in the next.  See #8.
7.  Take a closer look at the arousals in the the polysomnogram.  A true central apnea will generally not result in an arousal.  If the arouals are preceding the central apneas, then these apneas are probably harmless.  Post-arousal central apneas are caused by a compensatory pause following a brief period of hyperventilation.  But something else would be causing the arousals, the central apneas would then be a result of that.
8.  I'm sure you've worked up all the metabolic disturbance possibilities, but chronic acid loss can lead to an elevated carbon dioxide level.  You would also see this as an elevated bicarbonate level in the routine blood work.  Or if the elevated CO2 levels are due to respiratory breathing disturbance then you can be a surgical candidate.
Well, good luck, and hang in there.
sleepydave

Thanks for your response, sleepydave!  

Here is some data from the two sleep studies: The diagnostic sleep study that was done in September of 2002 showed decreased sleep efficiency (71%); sleep stage distribution was notable for a decrease in slow wave sleep.  She had a central apnea index of 4.2 events per hour, and obstructive apnea/hypopnea index was 2.  The worst central apnea lasted 27 seconds and was associated with desaturation to 94%.  End tidal CO2 readings were not elevated.  Periodic breathing was noted during 5% of her sleep time, mostly during REM. She did have an pH probe during that study and had 2 episodes of reflux resulting in arousal.  

After this study, we went to a pediatric ENT who first said "tonsils out" and we were all prepared to do that and she changed her mind.  L's tonsils are not enlarged.  We followed up with a clinic visit with the doc who had read her sleep study.  He wanted to do a fluoroscopy study to see what part of her airway was occluding, if possible.  This did not result in any usable data as L woke up every time they switched the machine on!  Months passed, we saw several other doctors, none of which helped us much.  

In January, 2004, we had another sleep study to try CPAP and BIPAP.  This time, her sleep efficiency was poor, at 30%.  She only slept a total of 2 hours.  She found the masks made her claustrophobic and the blowing air bothered her nose.  On CPAP, she had some central apneas (no index was reported), and periodic breathing (13%).  After midnight, she was transitioned to a full-face mask and she was started on BiPap of 8/4 with a rate of 10.  She slept for 45 minutes, during which she did not have any central apneas, but she was snoring, so they increased to 10/4, upon which she woke up and was unable to sleep the rest of the night.  (This was before the orthodontist did the palate expander).

After this study, L was so unhappy and frustrated that she said "No more tests, no more doctors, whatever this is, I will live with it!!"  That was our approach for the next several months, but by spring of 2005 her acid reflux had become so bad she was having stomachaches every day and her fatigue was getting out of hand.  She knows she cannot "live with it."  So we are back in the swing of trying to find a solution again.  

I have been in touch with our sleep doctor and we meet with a CPAP coach to talk about masks next week.  I asked for another study, first without any breathing assistance, to see what her central apnea index is like now, and then with the BiPAP.  We are also scheduled for the modified barium swallow study to see what is causing the problems with swallowing.  I have read that swallowing trouble and central apnea can be related.

Could you explain the connection between gastric reflux and apnea?  These have always been described to us as two separate problems, and we have treated them as such so far.  The sleep doctor sent us to the gastroenterologist, who sent us to the ear-nose-throat doctor, who sent us to the allergist.  Are you saying she could be having obstructive episodes (or partial obstructions) that do not show up on the test?

I'm also not sure I understood your point in #7.  If you could say some more about that, that would be great.  

Yes, we are on a mission to find the solution here.  Thanks for your help.

williebear

Hello Williebear-
Well first of all, I think you've got some good news in there.  I'll comment on some of these points, but we need more things.  What was the total amount of all arousals?  Do you have the actual % of slow wave sleep?  And all sleep, total in minutes?  Have you reviewed medications, both prescription and (you gotta ask) illicit with your physician?  Any PLMs, RLS?  A visit to a Board-Certified Sleep Specialist may also be appropriate, but let's sit on that for a bit.
1.  Slow wave sleep (SWS) is where we get our rest.  Children have gorgeous SWS.  If this study was done when she was 12, she should have had over 20-25% SWS during 10-11 hours actual sleep.  With a 71% efficiency and the SWS reduced, even if the test was 10 hours long, there's the sleepiness, period, done.
2.  There's some discussion on when to send kids for surgery for OSA.  BTW, unlike adults, surgery almost always works for OSA in kids.  We are usually looking at AHI 3.0 obstructive events to push T&A, some folks will do it at 1.0 especially if there's desaturations.  Bottom line, we are far more sensitive to OSA in kids.
3.  At 15, she's an adolescent, so those numbers can increase a bit.
4.  Ah, the central thing.  Central apneas have to be analyzed very carefully, they're easy to misinterpret, and you can really get into big trouble if that's done.  Take 2 big sighs.  Sit there.  Count the number of seconds before you feel like taking another breath.  If its 10 seconds or more, there's a central apnea.  Is the surgeon banging on your door to take your tonsils out?  No, at least not in this example.  So, if something causes a disturbance in sleep continuity, and that results in a little hyperventilation, there will be a compensatory pause- a central apnea.  But something else would be causing the arousals, the central apneas would then be a result of that, and we can see that on the sleep study.  Things that could cause that could be acid reflux, PLMs, or drugs for instance.
5.  If there's no arousal anywhere near the CA, it could be neurological in origin.  Central apneas are quite normal in REM sleep, however.
6.  We always consider obstructive etiology when we see CA in kids.  There may be technical error and we may not be picking up the effort signals that would define obstructive completely.  And interestingly, studies 30 years ago by the leaders in the sleep field showed that if you completely clog up a kids nose, you can genereate central apneas.  Its fascinating how that happens, but nonetheless we still have an obstructive cause, and your story with the music teacher really rapped me upside the head when I heard that.
7.  There's more to CA, but that's all we need right now.
8.  So, the CA index is not a lot at 4.2, and if you take away REM centrals and post-arousal centrals it could be much less.  If we get all the sleep quantity numbers, we're talking maybe 10 respiratory events all night.  That will not wreck the SWS and efficiency enough to create the symptoms you describe.  Besides, kids are notoriously good sleepers, will usually sleep through anything, including sleep apnea.  We've got to look a little more carefully here.  That's why we need the total number of arousals, especially the ones that may interfere with the SWS periods.
9.  I wouldn't totally discount obsructive component.  Snoring and very small uncounted respiratory disturbances can generate plenty of arousals.  And although most kids simply sleep through them, you can still check that component.  If CPAP works, there you go.  You might try the Oracle, a mouth only mask, and that might get rid of all the issues with the nasal obstruction.
10.  The relationship of GERD and OSA.  Negative pressure from wretching against a closed airway can draw gastric contents up into the esophagus, and gastric contents (we're talking battery acid here) can inflame and swell and help to occlude the upper airway.  Do a Google, you'll get a ton of articles, if there's not a link here yet.
11.  So what's the bottom line?  There are about 84 separate, recognized sleep disorders.  Many physicians who do sleep only know OSA.  I would start by a careful review of the raw data (the 1000 page study itself) by a qualified sleep specialist.  If your guy is not a Board-Certified MD or PhD, then consider a Sleep Psychologist, these are the guys at the high end of the field, who are familiar with all these disorders.  I think you're doing everything right, but I would not totally rule out the presence of at least one more component, not yet anyway.
That's all I can think of now, get back with the other numbers and we'll see if we can shed any more light.  Good luck.

sleepydave

Sleepydave -
Thanks for all the great info.  Much to chew on here.  So the question is really, does the arousal come before or after the CA -- right?

The data I gave you previously is all I have, but we are headed to the sleep clinic on Wednesday to talk with the CPAP trainer about masks.  I can ask for more info then.  Thanks!

Hi williebear!
Here's a central apnea following an arousal.  I know there's a lot of stuff here, most of it just looks like a bunch of squiggles (actually, it is a bunch of squiggles), but focus on the waveforms marked Thermistor, Chest and Abdomen.  The thermistor is registering breathing, in and out, in undulating fashion, while the other 2 channels are measuring effort at the chest and abdomen.  You can see that there's no airflow in that area called "central apnea" in the middle of what are all normal breaths.  You can also see a bunch of artifact immediately preceding the central apnea.  This represents a gross movement and a slightly larger breath.  The central apnea in this case is a compensatory pause following the arousal.  This central apnea is absolutely harmless.
sleepydave

Here's a central apnea that results in an arousal.  There's no drop in oxygen level, though, so we're not real panicky about these either, unless there's lot of them.  Then they could contribute to daytime sleepiness or hyperactivity in children.

NPSG Scoring Purists:  Lighten up, it's close enough.



Last edited by sleepydave on Thu Jul 21, 2005 10:42 pm; edited 1 time in total

Here's an interesting group of centrals.  These are occuring during REM sleep.  REM centrals are usually a normal phenomenon.  Notice how the waveforms in the top 2 channels abruptly diverge a half dozen times?  Those are REMs.  Some minor desaturation, the SAO2 waveform (oxygen level) dips slightly after the second apnea, but these are basically benign.

OK, this is a big deal.  These are obstructive apneas, they're long, they cause severe desaturations, there's a lot of them and this kid needs to go to surgery.  Notice how that even though there's no airflow in the thermistor for long periods, the child is still struggling to breathe as evidenced by the movement seen in the chest and abdomen channels.



Last edited by sleepydave on Sun Dec 02, 2007 11:17 am; edited 1 time in total

Hi, Sleepydave
Thanks for the interesting pictures.  L and I looked them over together and they made a lot of sense.  We went to a visit with the CPAP trainer (a nurse practitioner in our sleep lab) this week and were so relieved.  She was unhurried, empathetic and thorough.  We went back through all of the studies and doctor visits we have done in the past 3 years and she patiently explained many things we did not understand before.  She had a chalkboard and drew diagrams of the different kinds of apneas, just like the tracings you showed us.  We still do not know exactly what L is dealing with, but she did tell me the following from her 9/02 sleep study: she had 29 total arousals, 25 central apneas, no PLMs.  Her slow wave sleep was 18% (combined with 71% sleep efficiency, that works out to only 1 hour of SWS, about half of what she should have had in 8 hours at age 12), and REM was decreased at about 20% as well.  She did not have the tracings in front of her so she could not say if the CAs were following or preceding arousals.  

We spent some time messing around with different masks -- L reacted the same as before to the nose mask and the full-face mask -- they made her feel trapped and panicky.  Surprisingly, she ended up most comfortable with a soft nasal prong system that she could actually breathe through.  We are scheduled for another overnighter in September, hoping for a cancellation sooner.  We still wonder how this will work when she has a cold or really bad stuffy nose, but we can work that out as we go along.  

The allergist is also ordering a CT of the sinuses, and we have the swallow study set up for August.  So we keep marching forward!  I am really curious to see if a bad swallow reflex will show up on the study and if this could be a key to the whole thing.  I know a bad swallow can cause acid reflux, and I know this happens to her at night sometimes, when she wakes up gasping and says, I think I just swallowed wrong.  Wish it were easier to capture these seemingly random events so we could study them better!

Thanks for all your inforamation and support.  We feel like we are on the right path now and a lot of that has to do with knowing what questions to ask.

Well, I few months have passed since I last checked in with the forum.  L has had a barium swallow study, which allowed us to watch her swallow different textures of foods.  It was an interesting but normal study, no problem there.  She also had a CT of the sinuses, also normal.  We then went in for our third sleep study, which was half diagnostic and half therapeutic.  During the first 3 1/2 hours, L snored and snorted horrifically, and slept very poorly, only 94 minutes.  She had an average of 58 "respiratory events" per hour. She had both central and obstructive events, mostly prolonged pauses of 10-15 seconds followed by an "inspiratory snort."  

She was then placed on BiPAP for 4 1/2 hours, during which she was only able to sleep for 55 minutes.  She REALLY hates the mask and machine and seems to fight it all night long.  Even with the lowest settings, 8/4, she feels trapped, panicky, and cannot get to sleep.

We have had the machine at home now for 3 nights.  She hates it.  My problem is knowing how hard to "push" her to wear it.  The trainer who worked with us at the hospital before the study said to take it slowly, try for just a few minutes at a time and build up gradually.  The respiratory therapist who rented us the unit said so go after it agressively and try to go all night as soon as possible.  I can see the wisdom of both -- if she could go all night, she could begin to feel the benefit, which would continue to motivate her.  But she is so scared of the machine that she practically hyperventilates at bedtime (and, of course, the machine doesn't help because it is shoving in even more air!)  "Ramping" does not work well on BiPAP at this setting, we are told, because it drops to 4/4 and builds back up within 5 or 6 breaths, less than a minute.  

L understands why she needs BiPAP and how the machine works; it is not lack of information, I don't think.  She has a SNAPP mask, soft and pliable and not as constricting as a hard face mask.  She does not complain about the mask, just hates the feeling of being forced to breathe.  I feel at a loss to help her, as I am asking her to do something I am not sure I could do.  So far, she has lasted 1 hour the first night, 2 hours the second night. Last night she pulled it off and turned off the machine in her sleep (at least she does not remember turning it off).  

I would love to hear from any teens that are using CPAP or BiPAP who could encourage L, as well as from any parents who have helped kids over this adjustment period.  She has heard over and over how much better she will feel if she uses it, but every day wakes up disappointed in herself and in the machine because she still feels lousy.  

Thanks!

Hi williebear!
Did you try some desensitization techniques?  I borrowed this from elsewhere in the forum:

Quote:

It's a slow, gradual introduction to each step of the CPAP/BiPAP process, advancing to the next step only if the patient has accepted the previous step completely.  Practice each step 15 minutes, 4-6 times per day, during the day.  Have her place the mask on her face herself for a few moments (so she feels he has control of it), on and off.  Then hold in place continually.  Then attach with headgear (still no CPAP or tubing at this point, and do with patient sitting up).   Then add a little CPAP pressure (4-5 cmH2O)(or just do the BiPAP at 8/4).  Then have her do this lying down.  Then have her resting in bed in the evening, perhaps falling asleep or dozing.  Then going to sleep at night.  

Again, this is a daytime thing to begin with.  The "pushing" done at night will only serve to associate bedtime with noxious experience, so that's having the opposite effect.  At that point, she's tired, ir's dark, just not the ideal time.  Good luck, check back.
sleepydave

OMG I can't believe I found this site!  I have a 16 year old son who has probably had this for years and I just never knew it.  He has always snored since I can remember. He has allergies which is what I have blamed this on.  I have told his drs. and they don't seem too interested. Now I have to do something because he is afraid to go to sleep. Last night the only way he would go to sleep is if I stayed up all night and watched him to make sure he didn't die. The night before he said that twice he woke up and and couldn't breathe or open his eyes. Of course I said it was a dream but now I see IT'S REAL!  I need help because I don't know where to start. Do I call his pediatrician? or a sleep clinic? or a surgeon?  Please help us.

L.falsetti