CPap for Kids after Cleft Palate Surgery?
CPap for Kids after Cleft Palate Surgery?
My 12-yr-old had her 3rd cleft palate surgery about one year ago that finally sealed the remaining fistula (tiny hole in hard palate that had pulled back open after previous surgery). We were hoping her snoring would improve, but it hasn't. She says she's often sleepy at school, and does show signs of ADHD/hyperactivity (which in kids can be a symptom of OSA).
She also had tonsils and adenoids removed at age 5, same time as her 2nd cleft surgery to repair that annoying fistula. (1st surgery had been at 16 months to repair a huge hole in soft and hard palate. The fistula that opened back up caused milk, ice cream, puddings to leak out of her nose as a toddler through age 5, and even after that surgery because the fistula reopened AGAIN, but leakage was less until finally fixed last year. Now no leaks.)
Important note: After that cleft surgery at age 5, her ENT said the cleft surgeon really did a number on her nasal passages, making them very narrow, which requires her to breathe through mouth.
So with this background info, can anyone venture a guess as to why she's still snoring (loudly, and disruptive enough to wake herself multiple times through night)? Do mouth breathers automatically snore?! I'm trying to decide if I should take her to see my Cpap doc (I've been doing cpap since July and am feeling much better, blood pressure came down, etc.) for a sleep study. They're expensive, though, so I'd like to see if any of you have tips for me first. Plus with the narrow nasal passages, would a cpap even help her?
Thanks!
She also had tonsils and adenoids removed at age 5, same time as her 2nd cleft surgery to repair that annoying fistula. (1st surgery had been at 16 months to repair a huge hole in soft and hard palate. The fistula that opened back up caused milk, ice cream, puddings to leak out of her nose as a toddler through age 5, and even after that surgery because the fistula reopened AGAIN, but leakage was less until finally fixed last year. Now no leaks.)
Important note: After that cleft surgery at age 5, her ENT said the cleft surgeon really did a number on her nasal passages, making them very narrow, which requires her to breathe through mouth.
So with this background info, can anyone venture a guess as to why she's still snoring (loudly, and disruptive enough to wake herself multiple times through night)? Do mouth breathers automatically snore?! I'm trying to decide if I should take her to see my Cpap doc (I've been doing cpap since July and am feeling much better, blood pressure came down, etc.) for a sleep study. They're expensive, though, so I'd like to see if any of you have tips for me first. Plus with the narrow nasal passages, would a cpap even help her?
Thanks!
Re: CPap for Kids after Cleft Palate Surgery?
One more thing...She has puffy, dark circles under her eyes--always has. Pediatrician said due to not breathing through nose which would clear out mucus. So it's the mucus that's always stuck in the nasal passages that's making her eyes puffy? Hmm. (Hoping cpap might help with that as well, because the poor kid always looks so exhausted. Dr. was afraid she wasn't getting enough (rested) sleep, but she sleeps 10-11 hours per night! And she's snoring all night, so she is apparently sleeping.)
- ChicagoGranny
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Re: CPap for Kids after Cleft Palate Surgery?
By all means get her a sleep study in a lab that is experienced with children. They will request that you sleep in the room (with your CPAP of course).
Did he proffer that there is any good way to improve the nasal airway?MomAndNewbieUser wrote:her ENT said the cleft surgeon really did a number on her nasal passages, making them very narrow, which requires her to breathe through mouth.
https://www.sleepfiles.com/OSCAR/
http://www.apneaboard.com/wiki/index.ph ... OSCAR_Help
http://www.apneaboard.com/wiki/index.ph ... ganization
For those not so good with technology: https://home.sleephq.com/
http://www.apneaboard.com/wiki/index.ph ... OSCAR_Help
http://www.apneaboard.com/wiki/index.ph ... ganization
For those not so good with technology: https://home.sleephq.com/
Re: CPap for Kids after Cleft Palate Surgery?
No, ENT doc just suggested occasional Neti-Pot or saline spray to clear out the nasal passages and then mouth wash/spray to help with her bad breath. (Since she mouth breathes, her mouth is always dry, so bacteria and doggie breath.) Nobody has ever suggested OSA for her and apparently snoring isn't unusual with cleft kids. Then again, the ENT and pediatrician aren't sleep/respiratory specialists, so maybe it wouldn't even occur to them?
I do think it's worth posing the question to my doc at my next visit. I"ll bring the kiddo along with me. Of course I need to do it before end of year for insurance to pay.
I've wondered since her surgery at 5 years old if, when she's grown, she might be able to have the nasal passages widened to restore clear nose breathing. The docs don't think it's a big deal and that mouth breathing is good enough, but I'd be miserable if it were me. It's all my daughter has ever known, though. When Dad tells her to chew with her mouth shut, she does complain that she can't breathe, and has to open her mouth to take a breath, then holds her breath while she chews. That can't be fun!
I do think it's worth posing the question to my doc at my next visit. I"ll bring the kiddo along with me. Of course I need to do it before end of year for insurance to pay.
I've wondered since her surgery at 5 years old if, when she's grown, she might be able to have the nasal passages widened to restore clear nose breathing. The docs don't think it's a big deal and that mouth breathing is good enough, but I'd be miserable if it were me. It's all my daughter has ever known, though. When Dad tells her to chew with her mouth shut, she does complain that she can't breathe, and has to open her mouth to take a breath, then holds her breath while she chews. That can't be fun!
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Re: CPap for Kids after Cleft Palate Surgery?
Hi - I understood that dark circles are often due to allergies, have you looked into that?
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- ChicagoGranny
- Posts: 14463
- Joined: Sun Jan 29, 2012 1:43 pm
- Location: USA
Re: CPap for Kids after Cleft Palate Surgery?
There is a lot of ignorance, incompetence and indifference in the medical profession. Witness this quote from MedScape,MomAndNewbieUser wrote:The docs don't think it's a big deal and that mouth breathing is good enough,
Here are some things that you may find valuable to read.Although cleft palate deformity was described hundreds of years ago, to this day, no agreed-upon management algorithm exists for patients with cleft palate.
Good information --> http://doctorstevenpark.com/attention-a ... -your-nose
http://doctorstevenpark.com/7-tips-to-b ... -your-nose (Your daughter is a special case and this may not help.)
Good advice on dealing with doctors --> http://doctorstevenpark.com/5-things-yo ... snt-listen
And yes, dark circles are a symptom of low quantity or low quality sleep.
May God bless and comfort you and your daughter.
https://www.sleepfiles.com/OSCAR/
http://www.apneaboard.com/wiki/index.ph ... OSCAR_Help
http://www.apneaboard.com/wiki/index.ph ... ganization
For those not so good with technology: https://home.sleephq.com/
http://www.apneaboard.com/wiki/index.ph ... OSCAR_Help
http://www.apneaboard.com/wiki/index.ph ... ganization
For those not so good with technology: https://home.sleephq.com/
Re: CPap for Kids after Cleft Palate Surgery?
Ask your daughter's primary care pediatrician for a referral to a sleep lab experienced in kids. The ENT sounds a bit arrogant.
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Taming the Mirage Quattro http://tinyurl.com/2ft3lh8
Swift FX Fitting Guide http://tinyurl.com/22ur9ts
Don't Pay that Upcharge! http://tinyurl.com/2ck48rm
Re: CPap for Kids after Cleft Palate Surgery?
Thanks all, for your suggestions and words of encouragement!
I've never considered allergy testing because she usually doesn't have coughing or runny nose, headaches, etc. unless experiencing a cold. She has always had the eye circles, though. Hmm.
I'll definitely look at those sites and will see what pediatrician (or maybe just my own CPAP doc) thinks about referring her for a sleep study. Certainly can't hurt.
Thanks again!
I've never considered allergy testing because she usually doesn't have coughing or runny nose, headaches, etc. unless experiencing a cold. She has always had the eye circles, though. Hmm.
I'll definitely look at those sites and will see what pediatrician (or maybe just my own CPAP doc) thinks about referring her for a sleep study. Certainly can't hurt.
Thanks again!