Our pulmonologist is wanting to try our son on a bi-pap and I'm taking him in tomorrow to get the mask fitted and to figure out the correct pressure setting.  At this point they want him on 7 for the inhale and 4 for the exhale.  Does anyone have any ideas that may help him to tolerate this better??  He's only 4 and is terrified of the mask and the machine.  We didn't even get to do a titration study on the cpap because he wouldn't let it come near him.  He really needs this...his AHI is 10.8, most of those being centrals.  However, his 2nd study had slightly more obstructive sleep apnea episodes and whenever he's sleeping in the car he obstructs very frequently.  I am afraid that he won't have anything to do with it....??!  Any thoughts??

“It's very hard to take. Little kids don't like it, but there are things parents and physicians can do to help make CPAP more palatable,” said Dr. Halbower, who serves as medical director of the pediatric sleep disorders program at Johns Hopkins University, Baltimore. Dr. Halbower recommended introducing the device slowly to minimize the fear factor. Put on the mask while the child is awake and doing an activity that is fun and pleasurable, she said.

The worst thing you can do is put the mask on while the child is asleep. “If they wake up and find themselves wearing the mask, they'll panic,” Dr. Halbower said.

Another trick that can be used to make CPAP part of the child's normal bedtime routine, along with brushing the teeth and a bedtime story. Other children who use CPAP are wonderful ambassadors for the device and can help relieve anxiety with a show-and-tell. Videos are good for this as well.

Despite these efforts, some children will do everything to resist attempts to put on the mask. Many parents will remove the mask in response to their child's distress.

That is a big mistake, Dr. Halbower said, because it just strengthens the child's escape and avoidance behavior. Eventually, the parent gives up.

Behavioral training can help parents block or prevent their child's avoidance behavior by using brief verbal prompting, redirection to a specific task, and if necessary, physically blocking escape while gently guiding the child to remain in the situation.

The child's attempt to remove the mask must be physically interrupted and the mask replaced immediately every time the child removes it. She said these behavioral techniques are used in her clinic under the guidance of Keith Slifer, Ph.D., a behavioral psychologist. [The techniques] “have proved very successful,” Dr. Halbower said.

Parents should also plan for safety in children who cannot remove the mask during emergencies, Dr. Halbower cautioned.
Use a nasal mask instead of a full-face mask, or have an emergency pull string that can disengage the mask to prevent aspiration or asphyxiation if the child vomits.

It is important for parents to establish a consistent bedtime routine that lasts about 30 minutes, Dr. Halbower explained. Such a routine includes soothing activities, and it always ends with the child putting on the CPAP mask, lying down, and going to sleep.

“Persistence and patience are key,” she said.

http://www.clinicalpsychiatrynews.com/article/PIIS027066440671654X/fulltext

I hope that you can get some useful information out of there.

Hi Shelee,

I was wondering how things were going for your little hose head?  Everything OK?  Anything we can do to help?



Susanne and her mini-hosehead Chris (283 nights on cpap and a lifetime to go.... )

I say build up the excitement of getting the mask.  Plan a mask party.  Let your child pick out the food, choose a nice dessert.  Even at the young age of four they can be a big part of the "party" planning.

Be cautious about how you feel.  They are experts at reading our feelings and will play off that.  Take some time for yourself to see how you feel.  If you look at this as a negative so then will your child.  

You might even take turns putting the mask on (it need not be connected to the machine at this point) and even playing with the air coming out of the tubing (without the mask on it)  All of these 'games' will lessen the fear.  Also encourage your child to put on the mask in the day without the machine just to get the feel of it.  Maybe you can make "mask" time special reading time or some other enjoyable activity that the child can relate the mask to a pleasant, quiet lovely time with Mom/Dad.  

If you have older siblings allow them to be part of the festivities also.  Please keep us posted and remember that we are always here for help and encouragement.


_________________
~ElleMarie~ One day at a time, ARE YOU KIDDING ME! Sometimes it's just a minute at a time.



AHI 100 -Diagnosis June 2007-

I'm not sure that we've made very much progress....  My son is willing to wear his mask and use the vpap while we read stories (and will often ask to read stories and wear his mask!!) but when he's ready for bed he doesn't want it anywhere near his face.  He did fall asleep with it on during nap time once, but woke up scared about an hour later and since then he hasn't been willing to try to sleep with it.  

Maybe it's a good thing that we haven't been successful in getting him to wear it yet.  He's scheduled for surgery in his mouth/throat (yet again) in a few weeks and he likely won't be allowed to wear it for several weeks afterward (2 weeks intense pain and 6-8 weeks total recovery time).  It's not something that I'm looking forward to...the last surgery that was similar was horrible..., but it's something that he does need and I trust his ENT.  (He's one of her special kids and she's really protective of him).  I am still going to encourage him to wear his mask and let me hook him up to the machine, but I won't try as hard to get him to wear it through the night until after he's fully recovered.

The main thing that I'm trying to do at this point is simply get him to get past his fear of the mask.  It's taken us nearly 4 months to get this far. Sam's been through so many surgeries and procedures already that he's pretty scared of anything that looks like it belongs to a doctor (including band-aids).  I can't say that I blame him....  Each time he goes to the hospital, he goes to sleep and wakes up with a new "owie".  The one that affected him the most was back in September of last year.  He had his velum repaired (300 stitches in his little mouth), a peg-tube placed, and his nose cauterized.  He has anaphylactic reactions to meds so his doctors try to team up and get as much done all at once as possible.  Instead of being able to eat normally (as we'd planned) after the feeding tube was placed, it was discovered that he had Eosinophilic Esophagitis (food allergy basically).  He's been NPO ever since.  It also didn't help that the discharge nurse neglected to read the chart notes from both surgeons and not only gave me a hard time for wanting more meds for Sam, but also didn't send us home with instructions for anything other than regular advil or tylenol.    Within 3 days, he'd developed a pretty good infection and what should have been a fairly routine recovery turned into a battle that lasted a couple of months.  

Ok....that was long.      Thanks for your advice.  I'll let you know how things go from time to time.  Hopefully we'll continue to make progress, even if it is slow.