3 yo daughter has sleep apnea

[candlegirl76]

So 5 1/2 months after my OSA diagnosis, my treatment is going great, I'm using my APAP machine every night. I am now almost able to quit taking my blood pressure meds completely. Almost off of the anti-depressants and feeling much, much, much better. I just had a hysterectomy, to help resolve severe symptoms of endometriosis, 3 1/2 weeks ago and haven't a stinking migraine since that day! Crazy! I was having almost daily migraines before starting on my APAP and then it was once every week or two. Good news for me!

Enough about me, however, my 3 yr old twins were showing signs of sleep apnea so I mentioned it to their pediatrician and she referred them immediately for sleep studies. My daughter has it, 1.8 AHI until she hits REM sleep then it's 6.5 AHI. So she was referred to an ENT and will be getting her tonsils and adenoids out in a month. Followed by another sleep study to see if it was successful in relieving her symptoms. My son (her twin) only had 1.5 AHI, is a very restless sleeper, snored all night long and almost fell off the bed 6x that night but no treatment is recommended for him at this time. A watch and see approach for him.

Back to my girl, do any of you have little ones who have OSA and have been treated for it in this manner? Did it work? Did they end up having to use a CPAP machine even after the surgery? This girl is so active and strong-willed that I can't imagine her having to use a CPAP. It was hard for me to adjust to using it, being "tied" to it all night long! I guess I'm looking for some kids with OSA stories to give me some perspective because I'm freaked out a little over here.

Thanks, Karen

[Julie]

Hi, so sorry to hear about your daughter. Glad things are going well with you. Now, I strongly suggest you get other opinions before having your daughter's tonsils out... see a pediatric neurologist and/or pulmonologist. There are many people who were told to have T&A's out and unfortunately not only did their apnea not improve, but occasionally surgery was counterproductive in that once your anatomy's changed Cpap can be more difficult to use if you need it afterwards. Millions of kids have their tonsils out all the time of course, though far fewer I think these days than in the past, but not to speak ill of the 'gods', surgeons tend to see every problem as something that needs surgery. There are other children (many younger than yours) with OSA and some are on Cpap (tiny masks, etc.) or receive other types of treatment. All I am saying is to get other opinions before going ahead - once something's taken out, it's out for good.

[kteague]

My now adult daughter was miserable as a small child with chronic sinus issues, strep throat, and excruciating earaches. She snored horribly, but back then I knew nothing about sleep apnea. Finally at the age of 9 I relented and allowed her to have her tonsils and adenoids out and they cauterized her turbinates so that scarring would help prevent them from swelling so much. My only regret was that I let her suffer for so long. It resolved all her issues except the seasonal allergies, but her misery during those seasons was much less. I always wondered if at some point the snoring would come back. All these years (30+) later it never has. No guarantee another person's results will be the same. There's always risk involved, which is why I delayed. But here's one story where surgery turned out to be a positive experience. I agree that a 2nd opinion wouldn't hurt, and could put your mind at ease. Good luck with everything.

[yaconsult]

Hi, candlegirl76! I remember when you first started posting. I am glad that your cpap therapy is going so well - it can be like a miracle!

Now, about your daughter... I would be be extremely reluctant to take a surgical approach. Unfortunately, I don't know if the fact that it is a child makes a significant different in the probable outcome. But in adults, these types of surgeries hardly ever eliminate the need for cpap and often make the problem worse or complicate it. You can find posts in this very forum of people relating their experiences with it.

cpap therapy is the gold standard for sleep apnea treatment. Why not try cpap therapy first, and see how it works for your daughter? She'll have a big advantage with you being a cpap-er too. If insurance or finances are an issue you might pick up a machine on craigslist or secondwindcpap.com instead. You will want to have a backup machine in the house anyway - if something were to go wrong with your machine it takes time to get fixed or replaced.

Surgeons want to do surgery. My ENT at my diagnosis was advocating a tracheotomy but luckily I insisted on trying cpap first. You can always stop using a cpap machine but you can't undo the changes made by surgery.

[Janknitz]

Tonsil and adenoid removal in kids is actually highly effective, not the same as adults (who have less success with their removal and more difficulty recovering). Most (not all!) kids don't need CPAP after having them removed.

[Worldwar2]

Now, about your daughter... I would be be extremely reluctant to take a surgical approach. Unfortunately, I don't know if the fact that it is a child makes a significant different in the probable outcome. But in adults, these types of surgeries hardly ever eliminate the need for cpap and often make the problem worse or complicate it. You can find posts in this very forum of people relating their experiences with it.

cpap therapy is the gold standard for sleep apnea treatment. Why not try cpap therapy first, and see how it works for your daughter? She'll have a big advantage with you being a cpap-er too. If insurance or finances are an issue you might pick up a machine on craigslist or secondwindcpap.com instead. You will want to have a backup machine in the house anyway - if something were to go wrong with your machine it takes time to get fixed or replaced.

Surgeons want to do surgery. My ENT at my diagnosis was advocating a tracheotomy but luckily I insisted on trying cpap first. You can always stop using a cpap machine but you can't undo the changes made by surgery.

yaconsult - thank you for taking the time to write all this, saved my typing fingers. Obviously, I agree with you completely and hope Karen gets a second opinion before she considers surgery for her daughter.

[pettyfan45]

I would also recommend not removing the tonsils, unless she has signs of tonsillitis then they should be removed. Tonsils are more useful to us while we are young than while we are adults unless they are being problematic it is probably better to leave them in there. Now I might get run out of town for suggesting
this on a CPAP forum , but you might look into an oral appliance for treating sleep apnea ( some people refer to it as a mouth guard) from a dentist. Now before the mob starts rushing I would like explain my reasoning here, first off kids are hard on everything (weather they mean to or not) and having to replace a CPAP machine can be EXPENSIVE, she might be to small for an adult CPAP and I have not seen CPAP machines for kids (I have since kids masks though so kids CPAP machines might exist), how young she is it could be that the muscles in the back of her throat are not quite full developed as they should be yet, but in a few months to years they could be where they might be and she would not need a CPAP machine or the oral appliance anymore and the oral appliance you could possibly just throw away while a CPAP machine you might be stuck with it, and lastly it could be vary difficult for someone that young to adjust to CPAP and they might not want to use it (though in your case that might be easier because you could go with "mommy uses one too" approach. So in short see about starting with oral appliance, if that works great, then keep using it and after a few months see about having another sleep study without it and see if her apnea has "gotten better" if so great she shouldn't the oral appliance anymore, if not then you might want to explore options for CPAP.

[palerider]

Tonsils are more useful to us while we are young than while we are adults unless they are being problematic it is probably better to leave them in there. Now I might get run out of town for suggesting
this on a CPAP forum ,

no, but I would ask for citations of what reference material you base this on.

[Chevie]

Finally at the age of 9 I relented and allowed her to have her tonsils and adenoids out and they cauterized her turbinates so that scarring would help prevent them from swelling so much. My only regret was that I let her suffer for so long. It resolved all her issues except the seasonal allergies, but her misery during those seasons was much less. I always wondered if at some point the snoring would come back. All these years (30+) later it never has.

Tonsil and adenoid removal in kids is actually highly effective, not the same as adults (who have less success with their removal and more difficulty recovering). Most (not all!) kids don't need CPAP after having them removed.

Thank both of you for posting this. There are some confused puppies hear making the anti-surgery posts.

(Of course, there is nothing wrong with getting a second opinion from a different and trusted ENT.)

Tonsils are more useful to us while we are young than while we are adults unless they are being problematic it is probably better to leave them in there. Now I might get run out of town for suggesting
this on a CPAP forum ,

no, but I would ask for citations of what reference material you base this on.

I would also like to see those citations.

There are many people who were told to have T&A's out and unfortunately not only did their apnea not improve, but occasionally surgery was counterproductive in that once your anatomy's changed Cpap can be more difficult to use if you need it afterwards.

Julie, You are badly confused. Again.

Sounds like you are thinking of UPPP.

[pettyfan45]

Tonsils are more useful to us while we are young than while we are adults unless they are being problematic it is probably better to leave them in there. Now I might get run out of town for suggesting
this on a CPAP forum ,

no, but I would ask for citations of what reference material you base this on.

Odd I can't seem to find it. I vaguely remember coming across an article about that about 7 years ago, I had really bad bronchitis and if antibiotics I was didn't help then my tonsils would have to come out and I did some looking on what tonsils were and if they were important at all (the antibiotics worked and they didn't need to take them). So, I either misread/ misremembered the article or the site that was hosting it has since taken offline. Eh, C'est la vie.

[Chevie]

I vaguely remember coming across an article about that about 7 years ago, I had really bad bronchitis and if antibiotics I was didn't help then my tonsils would have to come out and I did some looking on what tonsils were and if they were important at all (the antibiotics worked and they didn't need to take them). So, I either misread/ misremembered the article or the site that was hosting it has since taken offline.

And you sully the reputation of this forum by making such a flimsily backed claim to a lady who has a young child with a serious health problem? Jeez.

[Pugsy]

Pediatric OSA is often treated with T & A surgery...very common.
Google "pediatric OSA treatment"
Always good to get a second opinion but we can't go comparing adult responses to the surgery to pediatric responses.

http://www.entnet.org/content/pediatric ... leep-apnea

Enlarged tonsils and adenoids are a common cause for SDB. Surgical removal of the tonsils and adenoids (T&A) is generally considered the first line treatment for pediatric sleep disordered breathing if the symptoms are significant and the tonsils and adenoids are enlarged. Of the over 500,000 pediatric T&A procedures performed in the U.S. each year, the majority are currently being done to treat sleep disordered breathing. Many children with sleep apnea show both short and long- term improvement in their sleep and behavior after T & A.

http://www.sleepapnea.org/treat/childre ... apnea.html

Surgical removal of the adenoids and tonsils is the most common treatment for pediatric OSA. In uncomplicated cases, the operation results in complete elimination of OSA symptoms in 70 to 90 percent of the time

[Chevie]

Pediatric OSA is often treated ....

Pugsy, If you ever drop out of here, it will be a sad day with all the nonsense that is posted going unchallenged. Thank you.

[candlegirl76]

Thank you so much for all your responses! I appreciate having some more info to go on. All my research has pointed to doing the surgery and then approaching it from another angle if her apnea doesn't improve. This past winter we all had more sore throats, strep throat and this spring/summer have been rife with seasonal allergies. So having her tonsils removed could also help with that. This kid is a tiger and while it would be nice to not have to have surgery, the potential outcome is quite promising. Trying to get this kid to "do what Mama does" and wear a CPAP mask would be akin to putting a CPAP machine on a tornado or wild animal and expecting it to stay there. Ha ha! We may look into doing an oral device but again I can't see her keeping that in her mouth! She doesn't realize that she's exhausted and has sleep apnea. She's just worried about playing and eating!

Again, Thanks!! Karen

[Hang Fire]

All my research has pointed to doing the surgery

You are making a good choice. My prayers that this will totally resolve the sleep apnea and the infections.

a tornado or wild animal

Once the sleep apnea is resolved, you may see an improvement in behavior including an increase in the ability to concentrate and focus. Lots of child behavior and learning issues are rooted in untreated sleep apnea - https://www.google.com/webhp?sourceid=c ... 20behavior

I am always happy to see parents making it a priority to care of their children. Not all parents do.