My 11 y.o. son was diagnosed with OSA at the age of 6.  He has been on a full face mask cpap since then.  The problem is that we have not been able to find someone who will follow him and tell us what the treatment plan is (other than sleep with this mask on!).  It has been very frustrating.  What I would like to know is who follows your children, what time of physician?  How often is he/she seen for sleep study or other treatment?  What type of full face mask are they using (we can't seem to find one that is small enough-they no longer make the original one he has been using).  Where are your children seen.  I live in upstate NY.  Thanks in advance!    

Michelle :  )
Mommy to Alex (cleft lip/palate, asthma, OSA, TTD, mild hearing loss) and Ryan - 4/30/95
                Christopher (glaucoma, apraxia) - 11/22/01

Hi michelle:
Syracuse, eh?  That's up in the boonies!  If it weren't for Jim Boeheim and the Carrier Dome, it'd look like Rome! (NY)

Anyway, I guess that's probably some of the problem.  In looking for a guy, I might try, in the following order:

Board-Certified Sleep Specialist, Ph.D.
Pediatric Pulmonologist, Board-Certified in Sleep
Pulmonologist, Board-Certified in Sleep
ENT, Board-Certified in Sleep

If no luck there, then look for the same guys without the Boards.

Alternatively, call around the sleep labs and try to get an idea who's good.

In regards to additional sleep studies, with children, there are a couple of windows where OSA may improve, one being puberty (the airway becomes a little larger relative to the obstruction) so there may be an opportunity for at least some pressure reduction.  Course, put on some weight and add some bulk to the neck and you're looking at perhaps some worsening of the OSA.  I guess the best answer would be to keep a vigilant eye and get a repeat study if symptoms return or worsen, snoring occurs despite proper use of CPAP, there is sleepiness or hyperactivity during the day, and really, a lot of stuff happens in 5 years in a child, so I'd say you're due, especially if it were a severe case that got you here in the first place.

BTW, did he have a T&A, or was that not an option because of the other issues?
sleepydave

Thanks for the reply!  Sometimes I feel like I am in the Boonies with the lack of services for children with certain medical issues (we have to go to Boston for treatment for my son who was born with glaucoma!).  Anyways, he did have a T&A a long time ago.  His last sleep study was done in January and showed he needed an increase in pressure.  Of course, I had to request the study because no one is following us.  It was difficult to get the respiratory company that we have used do the settings for me because as you know this is not FDA approved.  When I have spoken with the 2 sleep labs we have gone to, no one has any recommendations of a peds. specialist.  I just recently found a Pediatric Pulmonologist, Board-Certified in Sleep who is in Rochester.  She said she would be willing to have a consultation with us.  I know every situation is different but just wondering how often children are usually seen, repeat sleep study.  Is there anyone else using a full face mask on their child and do tell what company you have found for this.   Thanks again~  Michelle :  )

Hi michelle:
A couple of weeks ago, ResMed announced FDA Approval of one of their machines for pediatric use:

Quote:

ResMed Corp. today announced an important milestone in helping patients with the upcoming launch of the first positive airway pressure (PAP) system cleared by FDA for pediatric use (7 years and older, or weighing more than 40 lbs) in the hospital and home. The Mirage Kidsta(tm) nasal mask and the VPAP® III ST-A is the first pediatric system cleared by FDA for treatment of obstructive sleep apnea and respiratory insufficiency in the hospital and home.

Excerpt from TAS.

The mask (yeah, unfortunately it's a nasal):

Kidsta

Sounds Polish to me.  I'll take some kapusta with that kidsta.

Maybe with some luck, some of the companies will enter the children's market, but unfortunately it's a profit-driven thing.

sleepydave

I did see that article and was so thrilled, especially for all those children who can use the nasal mask!!  Our turn will come!

Michelle :  )


_________________
Michelle : )
Mommy to Alex (cleft lip/palate, asthma, OSA, TTD, mild hearing loss) and Ryan - 4/30/95
Christopher (glaucoma, apraxia) - 11/22/01

sleepydave wrote:

The mask (yeah, unfortunately it's a nasal):

Kidsta

sleepydave

Hi SleepyDave

Any info on the sizing of this mask...just wondering if we can size it down enough for my little munchkin...doesn't seem like it would make her claustrophobic like other nasal masks and wouldn't put as much pressure on her nares as the SNAP small nasal pillows...so it's intriguing.


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Erin
Mom to 3 children 4 and under!! including a sweet 2 year old who has chronic kidney failure with severe cystic encephalomalacia, cortically blind, mixed cerebral palsy, severe global delays, Sleep Apnea, possible RLS, reflux, G tube

Hi erin:
Called up the rep, and it seems to be just the one size.

Also the availability won't be till the end of summer (and tell me about release dates!)
sleepydave