Hello, per 2 sleep studies, my 6 year-old has obstructive sleep apnea caused by a P-flap surgery (he has a cleft palate).  He has apneas up to 40 seconds long.  Between the apneas and snoring incidents he is woken every 2 minutes throughout the night (on average).  He also has an average of 3 central apneas during the night.  The second sleep study showed evidence of night time seizures.  Needless to say, my son doesn't get a good night's sleep.  His sleep doctor has prescribed the use of a CPAP with the pressure set at 10.  My son feels like he is suffocating with the mask on because it is hard to exhale with the pressure at 10.  I have put the mask on and I would agree with my son.  

Does anyone have advice on helping him adjust to using the CPAP?  Right now he is getting nightmares that he is suffocating.  Thank you for any advice you have.

kshinz wrote:

Hello, per 2 sleep studies, my 6 year-old has obstructive sleep apnea caused by a P-flap surgery (he has a cleft palate).  He has apneas up to 40 seconds long.  Between the apneas and snoring incidents he is woken every 2 minutes throughout the night (on average).  He also has an average of 3 central apneas during the night.  The second sleep study showed evidence of night time seizures.  Needless to say, my son doesn't get a good night's sleep.  His sleep doctor has prescribed the use of a CPAP with the pressure set at 10.  My son feels like he is suffocating with the mask on because it is hard to exhale with the pressure at 10.  I have put the mask on and I would agree with my son.  

Does anyone have advice on helping him adjust to using the CPAP?  Right now he is getting nightmares that he is suffocating.  Thank you for any advice you have.

Hi,

Could you tell us what type of cpap machine (brand and model) your son is using?  Is it a straight cpap?  Auto cpap?  Bipap?  Do you know if it has c-flex?  I understand that c-flex helps with the exhale and thereby the feeling of suffocation.  Oh, and what kind of mask is he using?  A nose mask?  A full face mask?  Some of this information might help us help you.  

It's hard for me to imagine someone so young dealing with this.  And it must be so hard on you.  Hang in there.  I'm sure others will have some thoughts on this as well.


Linda

Hi there!
Yeah, ditto Linda, the only electronic piece of equipment a 6-year old should be dealing with is a Nintendo 64.  But to the problem...
Does your machine have a ramp button?  If so, set it to the lowest level, usually about 4.  We can figure that out by the machine you have.  That'll start him out slow till he gets to sleep, and you can hit it as much as you want.
Try to get all the sleep study results, send me a PM if you want, we'll see if there's something in there to work with.  Especially a table that lists the responses to the various levels of CPAP...we may be able to bargain with the doctor a little bit.
Is his nose patent (open)?  Close mouth, breathe through nose, occlude each nostril individually.  See what happens.  If nasal passages are occluded and you are using a nasal mask, it's gonna be a struggle.  Gotta get different mask.
Not that we can do anything about it now, but more surgery scheduled?  What's your surgeon have to say about this--while this is a VERY complex issue, depending on the mechanism of the obstruction, another alternative may be out there, like an oro-dental device, if you haven't already exhuasted all the alternatives.
If he REALLY hates it and his compliance is very poor, or you're up all night, we could try a desensitization program, a gradual introduction to mask and pressure, lemme know and we'll spend some time on this.
Get back with more info, but at least start hitting the ramp button right away, that might help a bit.
sleepydave

Hi Sleepydave (and Everyone Else, too!),

Could you share more information regarding a desensitization program for children?  I did some volunteer work in Ecuador early this year at an educational facility and orphanage that serves special needs children.  There is a 4-year old boy there with obstructive sleep apnea that is so severe that he needs mouth-to-mouth resuscitation every time he has an episode.  The doctors say his apnea is as a result of poor muscle tone in his throat, so it collapses sometimes when he is sleeping, but they hope he will grow out of it.  He was born with cleft palate, so already has some challenges in breathing, so it's generally complicated.  And because his apnea is so severe, he has actually regressed in his development, and has had permanent brain damage.  

I was able to solicit some equipment donations, including a BiPAP and pulse oximeter from Respironics and an apnea monitor from CAS Medical (which unfortunately isn't very useful because he doesn't have central apnea), so that was wonderful and so generous of those companies.  Now it's time to put the BiPAP to work, but with a child who is does not have the capability to understand what the benefit is of his using the mask, it's a challenge to know how to approach the process.  FYI, they have a full-face mask for him because he breathes through his mouth.

I am in close touch with his caregivers and will be going to volunteer there again in a couple of weeks, so any ideas or advice would be appreciated!

Thank you!

Rachael

Hi Rachael!
Wow, another horrendous problem, I'm glad there's folks out there helping him.
Let me start out by saying the front line treatment for OSA in children is surgery, T&A, if this boy was anywhere in the U.S. he'd have had surgery YEARS ago.  This is so frustrating, if there's ANY way you can see or get the boy to a qualified surgeon, either there or here, do so.  This case tragically exemplifies what happens in severe, untreated OSA in children.  Surgery is preferable in kids not only because of the high degree of success in correcting OSA but you also overcome the problems of CPAP intolerance-- and it sounds like you can't afford to have him off CPAP at all.
OK, if that's not possible, let's go to Plan B.  There's a desensitization explanation on this website: Desensitization
but in a nutshell 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 (this the ideal situation, I know you're short on time, tho).  So it's having the patient place the mask on his face himself for a few moments (so he 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).  Then have the patient do this lying down.  Then have the patient resting in bed in the evening, perhaps falling asleep or dozing.  Then going to sleep at night.  Add pressure as tolerated, use ramp feature, or BiPAP mode till the prescribed pressure is reached.  In your case, I hope you were able to get or maybe can get an AutoCPAP unit, that'll take some of the guesswork out of the titration, or at least try to get the O2 sasturation into the mid 90's.  Good luck, stay in touch.

sleepydave

Thanks, Sleepydave!!  This is GREAT information.  

He had his tonsils removed (not adenoids, because he has cleft palate so it's contraindicated), but the doctors in Ecuador advised that he not have any surgery on his throat now because of the danger of impacting his vocal cords.  Do you know what kind of surgery would be done in the US in a case like this?  I know that they have had a variety of tests done, so short of having him here to be examined, is there anything that I could bring to a doctor in the US in terms of test results or images (I know he had an MRI) that would allow them to evaluate his condition to know if he's a good candidate for surgery?  I think it might be possible to get him to the US...

Regarding your desensitization advice, I passed the information on to his very grateful caregivers, and they just had one question about what you wrote.  The instructions for the Respironics ComfortFull full face mask they have for him say to never use the mask without having the machine turned on and operating properly.  So while they think it's a great approach to having him wear the mask to get used to it, they're hesitant about doing it without the hose attached and machine turned on.  Any thought on that?

Thanks again for your help - it's excellent to find someone who has experience with all of this and is willing to share knowledge freely!

Rachael

Hi Rachael!
Whew!  Now I can breathe (somewhat) again, forgive me for thinking that the mainland U.S. is the only place in the world where you can get proper medical care (actually, in a lot of categories, we're not so hot!).  Anyway, it sounds like he's getting a heckuva lot more care than I first thought.
Let me charge on here, though, just for the sake of general discussion on this subject because it's important.  Now, there is also a difference between sleep apnea and obstructed airway.  Some kids' airways are so restricted that they obstruct in varying degrees even while awake.  In this instance, a tracheostomy may be required.  Also, in severe life-threatening sleep apnea, especially if it has not responded to surgery, a tracheostomy may be the preferred treatment, it would undoubtedly bypass the obstructions and create a much safer situation.  I mention this because of the obviously life-threatening events that are still occuring.  So actually I'm still jumping up and down a little and must err on the side of caution, I wonder if this was or is being considered.  Other than that, I'm sure any ENT surgeon would need to actually examine the patient before voicing an opinion.
Speaking of caution, there is a safety flap on the full-face mask that allows for patient breathing in case of accidental disconnects, power failure and the like, and CPAP desensitization is done under direct supervision.  At the first sign of trouble of any kind the step is terminated.  In desensitization, we need to get the patient used to 2 things - a mask on his face and breathing with extra pressure, and it's helpful to do them separately.  And although we're talking about short periods here, I'll bow to the concerns of the caregivers and the obviously fragile situation we have here, and suggest that you start out with some minimum flow (the 4-5 cmH2O) to insure flushing of CO2 from the mask.  Good luck, check back.
sleepydave

PS TO ALL READERS!!!  The terms like tragic, life-threatening, tracheostomy, and mouth-to-mouth resuscitation are not put in here for dramatic effect.  This is as dangerous as it sounds.  If you suspect your child has a problem anywhere near close to this, get help now!!!

Hello, and thank you all for your support.  My son is using a regular CPAP - no C-Flex.  The docs did move his pressure down  fo 6 for the time being in hopes that he will adjust (we will need to eventually get it up to 10).  He has worn the mask for 2 months (on a pressure of 4) when going to bed and tolerates it for a few hours.  I need to go in and "assist" him about every 10-15 minutes while he wears the mask.  My son is a very wild sleeper and gets tangled in the hose, pulls the mask off, wakes up crying and screaming, begs for help and such.  I feel so bad for him.  

He wears a full face mask (the smallest the respiratory therapist could find).  He is a full on mouth breather at night because his nose is deformed due to the cleft.  One nostril is closed and the other doesn't work that well either.

The alternative is to reverse the surgery.  The problem with reversing the surgery is that he has speech issues due to his cleft.  If we reverse the surgery no one can understand him talk.  Since having the P-flap surgery my son was able to make friends at school, be understood by his teacher.  It gave him the courage to talk more and increased his vocabulary.  The surgery was a wonderful success - speech and language wise so I really want to make his CPAP work for him.  

I just don't know what to do at this point to help him adjust to wearing the mask at night.  Again, thank you for all the help.  My town has no pediatric support for this issue.

kshinz wrote:

Hello, and thank you all for your support.  My son is using a regular CPAP - no C-Flex.  The docs did move his pressure down  fo 6 for the time being in hopes that he will adjust (we will need to eventually get it up to 10).  He has worn the mask for 2 months (on a pressure of 4) when going to bed and tolerates it for a few hours.  I need to go in and "assist" him about every 10-15 minutes while he wears the mask.  My son is a very wild sleeper and gets tangled in the hose, pulls the mask off, wakes up crying and screaming, begs for help and such.  I feel so bad for him.  

He wears a full face mask (the smallest the respiratory therapist could find).  He is a full on mouth breather at night because his nose is deformed due to the cleft.  One nostril is closed and the other doesn't work that well either.

The alternative is to reverse the surgery.  The problem with reversing the surgery is that he has speech issues due to his cleft.  If we reverse the surgery no one can understand him talk.  Since having the P-flap surgery my son was able to make friends at school, be understood by his teacher.  It gave him the courage to talk more and increased his vocabulary.  The surgery was a wonderful success - speech and language wise so I really want to make his CPAP work for him.  

I just don't know what to do at this point to help him adjust to wearing the mask at night.  Again, thank you for all the help.  My town has no pediatric support for this issue.

Hi,
I can't contribute a darn thing other than to say my heart goes out to you and your son.  I can't imagine what it must be like to have a child and deal with these types of health issues.  It boggles my mind.  It's good your son can now communicate, that's so important, isn't it?  I haven't even read all of this topic here, but I know sleepydave's the best (bet he's blushing reading this).  If he can't help, you can bet he's frantically looking to find info and to learn more about it all.  He's a caring soul.   I only wish I had his exertise.   Let us know how things go.  

Linda

Hi kshinz...
Again I echo Linda's feeling, and I wish I had the answer to everything, but I don't, some of this is just going to be a long, patient process.  I know that by this time, your sleep is probably worse that your son's, but anyway...
..it does seem that you've made considerable progess since you were here last.  And can you get some more of the sleep study results?  Not that they would change what we're doing, but just somewhat curious as to what we're dealing with.
Do you use the ramp feature on the machine?  That would allow him to start at 4 and then move up when he falls asleep (hopefully) to 6 or 8 or 10 or whatever.
Kids are notoriously good sleepers.  Once they fall asleep, they sleep through anything, sometimes even CPAP.  If he wakes up a lot (or too much) we might wanna take a look at all the basic sleep hygiene steps.
If he's still having a lot of respiratory events, on 4 or 6 or whatever, that cause him to wake, then getting him to therapeutic level sooner might solve some sleep continuity issues.
Did you consider CFlex or BiPAP, which could be a more comfortable mode of breathing if the ramp doesn't work.
This is obvious, but we have to keep it in mind.  Patients pretty much have problems with CPAP only whan they're awake, not when they're asleep.  We should focus on mask acceptance.  There are desensitization methods, it might be kinda late, but perhaps doing a little bit of work during the day (5-15 minutes at a shot might help to desensitize him to wearing a mask, especially if you incorporate a different modality).
Dry mouth might wake him up, got a humidifier?
Consider AutoCPAP, which would add the higher pressure only when necessary, but I'd save that till last.  You could probably get the same effect with the other methods, anyway.
How big is he, what mask are you using, specifically?  Maybe we could fiddle a little with the interface if there's something there that's creating an issue.  I'm thinking maybe the oral interface, but that depends on his size.
Hope there's something in there you can use.  Hang in there.
sleepydave

Thank you both for all your care and attention.  My guy is lucky to have people out there that care so much about him.  He is a jewel!!!  Anyway, I have considered a C-Flex but am having trouble with the durable medical goods companies.  That is a whole other ball of wax.  I'll get there with them, I am persistent.  C-flex may be the way to go.  Yes, I use the ramp.  He starts at 4 and ramps to 6.  I agree with you that one of the problems is that the pressure is low enough that he still has a ton of apneas that wake him up.  Once the apneas wake him up he struggles even more.   In addition to still having apneas with the mask on he is a wild sleeper.  He has always moved, walked, talked and such in his sleep.  This is where the tangling aspect wakes him up.  What part of the sleep study are you interested in?  I have the study and can provide numbers if that will help you.  His mask is a small (the smallest they make I am told) but it seems too large.  It is always slipping off his face.  We have tried the ResMed Mirage and the Respironics Comfortfull.  Maybe I should try to rent a C-Flex and bump his pressure up closer to his therapeutic level?

Hi again!
Y'know, Respironics priced their CFlex machines at about the same price as the regular machines, so try to push the DME company to just change it out.  Maybe even call Respironics directly, you could get some help there by them putting some pressure on the DME company.  If you're using a full-face, then the hose comes directly out of the bottom, right?  Perhaps a mask with a swivel attachment would allow you to run the hose from the side or top to reduce tangling.  What was the lowest O2 saturation seen in the pre-study, the AHI, and the AHI's for all the different pressures in the CPAP titration?  If the AHI was high on everything except 10 or more, then yeah, go to therapeutic level sooner than later.
Also, do you a timeframe you're working with, like after x years, his airway will get relatively larger and reduce the need for CPAP, or re-evaluated for surgery.  Hang in there......
sleepydave

Thanks Sleepydave!  Just having someone to bounce ideas off of is helping me.  The mask connects in the front with the swivel.  I wonder if there are connections that are stronger?  He is either pulling the tube off or rolling over the hose until the tube pops off.  Last night I slept with him and pretty much immobilized his movements.  That worked pretty well - for the hose/mask removal issue.  I don't get sleep though, but I can cope with that part of it later.  Right now I want to get him adjusted to his new sleeping style.  I don't have the copy of the sleep study from the second time (when they titrated his CPAP).  All I have is the first study.  Lowest O2 sat is 79.7%.  118 OBS Apneas, 22 Hypopneas, 6 Central Apneas and 187 Snore arousals.  His snoring is very loud and the tech said that it woke him up constantly and was a problem especially since he had a lot of Apneas as well.  Thanks again for everything!  When I get the numbers from the titrating sleep study I'll post them.  :)

Hi kshinz!
Sounds like you're making a little headway, and as I always tell everybody when they're having problems, once you get pretty close, kinda stay there for a bit and grow into it.  And BTW you're doing a heckuva job, I'm gonna go get all them 50 year old-somethings and give them a what for.
Cause the thing about doing a lot of changes is, yeah, you can run the bill up real quite for maybe not that much benefit, so I'm trying to keep to things that might really be helpful.
This is the thing with the mask.  Here's the ComfortFull, which I think you're using:



see how the hose connects to the fixed port and MUST go down when he can grab it?
Now this is another design, a Mirage:



and see how the hose connector swivels?  I was thinking this could help move the tubing out of the way, over his head if necessary, and maybe get it out of the line of fire.  Might be a thought the next time your insurance will pay for a mask (and they should allow for a new one every 3-6 months, call up and get the schedule, and circle it on the calender.  Or the DME company can do this for you).
Keep chipping away.
sleepydave

I too have a child with sleep apnea.  Unfortunately my child has both obstructive and central.  Sergury was not an option.  The doctors felt that it would not help.  A c-pap has been of great help.    My child has a rem-pro with a gel mask.  there have been times that the alarm has gone off several times in one night.  Between a husband on a c-pap a child on a c-pap and another child with asthma......nights are not an easy process in my house!

My 7 year old has been on a c-pap for just over a year now.  Getting used to the mask was a very interesting process.  Now, at times, my child adjusts  the mask when the alarm goes off.  We can always tell when a cold is coming on because the alarm sounds much more often.  I would say that it took a good 8 months of nightly visits to get comfortable with the mask.

My child went to a sleepover for the first time this past weekend.  Mother hen had a very hard time with it!    It went well   The other children were very curious.  My child explained it to them and allowed them to feel the air coming out and that was it.  I can't believe how well it went.  There was no teasing, no laughing at, just questions.  I think that I was more afraid than my child.


_________________
Wishing for a good night's sleep.

Thank you!