Obstructive Sleep Apnea? - Mothering Forums

Forum Jump: 
 
Thread Tools
#1 of 9 Old 12-03-2007, 11:16 PM - Thread Starter
 
2boyzmama's Avatar
 
Join Date: Jun 2007
Location: Dayton, Oh WPAFB
Posts: 5,911
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Has anyone here had experience with this?

Connor was just diagnosed with suspected obstructive sleep apnea. His adenoids are rather enlarged, and that coupled with his malformed lower jaw (micro/retrognathia), and airway (laryngo/tracheo/broncho malacia) is making for some scary nights for me. I lay half awake most of the night listening to his horrible breathing sounds and counting the seconds between his breaths when he "pauses" and "gasps". We are now on a two week trial of a nasal steroid to try to shrink the adenoids. Then comes a sleep study. We want to avoid an adenoidectomy because it would be potentially problematic with his airway instability.

Does anyone have experience with this? How was it treated? I'm researching now trying to figure out what our options are...

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
2boyzmama is offline  
Sponsored Links
Advertisement
 
#2 of 9 Old 12-03-2007, 11:24 PM
 
CarolynnMarilynn's Avatar
 
Join Date: Jun 2004
Posts: 2,206
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)
How scary. A friend is going through the same thing and her son is doing better on a nasal trumpet. Invasive but better than the other options.
CarolynnMarilynn is offline  
#3 of 9 Old 12-03-2007, 11:27 PM - Thread Starter
 
2boyzmama's Avatar
 
Join Date: Jun 2007
Location: Dayton, Oh WPAFB
Posts: 5,911
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Nasal Trumpet? And off to google I go...

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
2boyzmama is offline  
#4 of 9 Old 12-03-2007, 11:33 PM - Thread Starter
 
2boyzmama's Avatar
 
Join Date: Jun 2007
Location: Dayton, Oh WPAFB
Posts: 5,911
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Ooh...I just looked up a nasal trumpet. Hmm...not anything I would look forward to (interestingly, ironically--both my husband and myself are trained in inserting these already...him because he's an EMT, me because I use to teach the Self Aid and Buddy Care classes when I was active duty military and I taught how to insert a Nasal-Pharyngeal Airway which is the exact same thing)

How do you get the kid to leave it in?? I guess secure it somehow? A lot of tape? Does continued insertion and removal cause swelling which would make breathing worse??

Hmm...

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
2boyzmama is offline  
#5 of 9 Old 12-05-2007, 01:06 AM - Thread Starter
 
2boyzmama's Avatar
 
Join Date: Jun 2007
Location: Dayton, Oh WPAFB
Posts: 5,911
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Just wanted to bump this up to see if anyone has experienced this... He fell asleep early tonight without getting his nasal spray, darn it. I'm going to keep it by my bedside, he'll be awake soon enough and I'll give it to him then. But I read up on the steroids very thoroughly and am concerned that no research studies have been done in children under age 2...I'm worried about dosage being too high since he's so much smaller and less mature than a 2 yr old...

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
2boyzmama is offline  
#6 of 9 Old 12-05-2007, 10:10 AM
 
kittynurse's Avatar
 
Join Date: Jun 2005
Location: with the rabid monkeys
Posts: 1,206
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Just giving you a bump and to mark my place because I'm very interested in this. We have to take our guy (who has the same name as your guy coincidentally) for an xray this afternoon and his adenoids are one of the concerns.

I've gotta run and get him ready for a school field trip but I will be back later.

Martha
kittynurse is offline  
#7 of 9 Old 12-06-2007, 01:50 AM
 
cheriliko's Avatar
 
Join Date: Apr 2007
Posts: 11
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Hi ladies,

My dd had obstructive sleep apnea. She had a cleft palate as well and a small jaw (sometimes known as Pierre Robin Sequence). She also has a small nose, a smallish airway and a deviated septum. The OSA was complicated because of the cleft palate because, like your son, we weren't able to remove her adenoids. She did have her tonsils removed, which unfortunately, didn't seem to have an effect. The sleep study after her tonsils were removed was actually worse than her initial study. We also tried the nasal spray - we didn't have much success with it unfortunately. Thankfully, my dd's OSA wasn't bad enough that she was in dangerous territory - so they decided to not treat it and monitor her every 6 months a sleep study. Other options for treatment were to go ahead with removing her adenoids (and risk her speech), move her jaw forward, making her airway slightly bigger or CPAP. Because her sleep apnea was mild to moderate, the doctor felt the adenoid removal wasn't worth it as besides affecting her speech it likely wouldn't have proven very successful either since there were other things that were causing the sleep apnea as well....it wasn't just large adenoids, rather a combonation of things. The jaw surgery, again likely by itself wouldn't have proven to be worth it given that there were other things involved, plus it was way too invasive a procedure for mild-moderate SA. And because of her age (4 at the time) and the mildness of the SA CPAP would have proven way too difficult for her to tolerate and likely wouldn't have been successful. Thankfully, with time and growth she has gotten much better. She now is within normal ranges while sleeping and while she still snores (quite loudly at times) she isn't having the gasping for air and the stopping of breathing that she used to. So we've been lucky.

For you, if the nasal spray and adenoid removal aren't options and the sleep apnea is severe enough where your son is in a danger zone (for heart attack and/or stroke) or if his daily activities are limited because he's tired, then CPAP is an option. It's difficult for kids to tolerate but some kids certainly do it...it takes a while but it might be worth a shot.

Good luck - and if you have any questions ask away!

Cheri
cheriliko is offline  
#8 of 9 Old 12-06-2007, 09:01 AM - Thread Starter
 
2boyzmama's Avatar
 
Join Date: Jun 2007
Location: Dayton, Oh WPAFB
Posts: 5,911
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Oh, thank you cheriliko! My son also has Pierre Robin Sequence (although his cleft is sub-mucosal and is so far just suspected...no one has actually determined if it's there and to what extent...he sees the cleft clinic soon)

I don't think that he's in any danger from the OSA, it scares me, but his pauses have never been long enough to cause any damage (although we havn'et done a sleep study yet, so we're not positive that he's not desatting...pulmo wanted to give the nasal spray a chance to work first) But, his growth is awfully stunted, and he seems to be immunocompromised; both of which can happen from OSA (plus add in all his other medical issues) That's the bigger reason why the pulmo is considering doing anything at all, thinking that maybe if we can get him sleeping better, he'll be healthier and grow better (and I'LL be much more relaxed, I lay awake half the night listening to him breathe...)

Did your daughter have her cleft repaired? Was it submucosal?

I also won't allow the jaw extension surgery, his Pierre Robin is pretty mild. If his jaw does not grow on its own, he can have orthodontic work later to help things look and function better.

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
2boyzmama is offline  
#9 of 9 Old 12-06-2007, 03:41 PM
 
cheriliko's Avatar
 
Join Date: Apr 2007
Posts: 11
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
My dd's cleft wasn't submucous - it was a soft palate cleft that was fairly wide. It was repaired - and the sleep apnea started after that.

If his growth and immune system are compromised then I'd certainly see the reason for treatment - though with the cleft they aren't going to want to pull the adenoids since they are likely helping with his speech.

I'd wait to see what the sleep study shows before you decide anything of course. I was in denial I guess before our first sleep study and didn't think there was a problem - I was floored when they said it was a moderate sleep apnea (though on the mild end of moderate). But after the sleep study it was really hard for me to listen to her sleep. When she was stopping breathing quite a bit I would go in and move her around to try and help it - never seemed to help though.

Hopefully, the sleep study shows it isn't as bad as you think...though if his growth is being stunted I would guess that's it's an issue that needs to be addressed. Sounds like your best option might be to at least try the CPAP. I would suggest finding someone who's been through CPAP with their child.

I was once part of a group of sleep apnea parents and there were 2 kids on the board who were using CPAP....I just looked it up and it's a very quiet board but the board owner I believe is one of the people using CPAP...so you might get some help there...the address is...

http://health.groups.yahoo.com/group...eepy_Children/

Also, maybe try the PRS page...since PRS children are so prone to OSA there is likely to be someone there going through this as well...if you don't already know this site here's the address....

http://www.pierrerobin.org/

Good luck!

Cheri
cheriliko is offline  
Reply

Quick Reply
Message:
Drag and Drop File Upload
Drag files here to attach!
Upload Progress: 0
Options

Register Now

In order to be able to post messages on the Mothering Forums forums, you must first register.
Please enter your desired user name, your email address and other required details in the form below.
User Name:
If you do not want to register, fill this field only and the name will be used as user name for your post.
Password
Please enter a password for your user account. Note that passwords are case-sensitive.
Password:
Confirm Password:
Email Address
Please enter a valid email address for yourself.
Email Address:

Log-in

Human Verification

In order to verify that you are a human and not a spam bot, please enter the answer into the following box below based on the instructions contained in the graphic.



User Tag List

Thread Tools
Show Printable Version Show Printable Version
Email this Page Email this Page


Forum Jump: 

Posting Rules  
You may post new threads
You may post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off