Anyone have a child with sleep apnea? - Mothering Forums

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#1 of 23 Old 07-10-2007, 05:48 PM - Thread Starter
 
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I am posting this here because I feel like health and healing is mostly adult related threads. Hope that's ok.

I'm looking for semi urgent advice as we are considering surgery for severe sleep apnea in our 6yo. This is a last resort of course but it appears to be coming to this. We are getting a second opinion this week but the docs all seem surgery happy so we would rather hear from other parents who can share good or bad results. I can't seem to find any negative experiences online, only positive.

Does anyone have experience with sleep apnea in a child of similar age to mine (6) or with the surgery?
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#2 of 23 Old 07-10-2007, 06:18 PM
 
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I don't have a child with OSA, but I have worked in a pediatric sleep lab for 7 years, so I've seen A LOT.

I would never put my child through anything unnecessary, but if the tonsils and adenoids are enlarged and the child has severe OSA, I WOULD NOT hesitate. The consequenses of untreated sleep apnea are many, ranging from learning difficulties, high blood pressure, risk of other cardiovascular problems, the list goes on and on. OSA is not something to be taken lightly, as it can result in serious, long-term, sometimes even lifetime health issues for your child. And this isn't even to mention the effects OSA has on your childs quality of life (and the quality of life for the rest of your family by default).

Tonsilectomy/Adenoidectomy is often a very simple, outpatient surgery, with a very speedy recovery time for most children. Sleep apnea is not something children have to live with, and they shouldn't.

The number one most rewarding thing about my job is seeing all of the children who's lives are completely different after their OSA is resolved. They just blossom, and it's beautiful.
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#3 of 23 Old 07-10-2007, 08:09 PM - Thread Starter
 
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Thank you. All I can find online is positives stories like you describe with children blossoming after the surgery.

It's difficult because my son clearly does have pretty severe sleep apnea but is not behind in any way developmentally. His main (daytime) symptom is that he is very tired and after a bad night he will have a hard time staying awake during the day. He also has a very bad chronic night cough. Poor kid The sleep apnea has been going on for years but somehow he hasn't lagged behind or shown symptoms other than daytime sleepiness and lack of energy. He has cranky periods but I can't say for sure whether it's sleep related or just being 6 and spirited.

My husband actually had the surgery as a child and still has sleep apnea which further complicates our decision ...
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#4 of 23 Old 07-10-2007, 08:41 PM
 
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Well, daytime sleepiness is a serious issue as far as I am concerned. How can you possibly have a joyful life if it's spent in a sleepy fog? Just because your DS isn't behind developmentally, or academically doesn't mean that there aren't other issues occuring with his lack of sleep. Nor does it mean that if left untreated these issues won't arise. The lack of energy associated with pediatric OSA is often the first step toward future obesity, which in turn is a MAJOR cause of adult OSA.

There are tons of other factors that can lead to OSA, not all T&A issues. The surgery may not help your son, but it IS the leading treatment for pediatric OSA. Personally, it's a chance I would take with my children.

The fact that your DH had a tonsillectomy as a child and now has OSA again doens't mean that is what is going to happen in your son's case. There is a chance that OSA may be hereditary, but it's likely other factors occuring (deviated septum, atonia of the upper airway, dental issues, etc. Even being slightly overweight can lead to OSA, depending on where your excess adipose tissue lies).

How big are your son's tonsils/adenoids? If they are enlarged, it's extremely likely that their removal will remedy the problem. If that's not the issue, there are other, less invasive methods of treatment, such as the CPAP. However, it's highly unlikely that a 6 year old boy is going to want to sleep with a CPAP mask for the rest of his life, and if it were my child I wouldn't want them faced with that possibility if it weren't absolutely necessary.

I guess for me, seeing what I've seen, it's a no brainer. My children would have the surgery in a heart beat. I know that reading the testimonials isn't enough, they are skewed accounts of what happened. But, in my professional experience, I've never seen a negative outcome from a T&A surgery, and I've never seen a parent that regretted it as a first line of treatment.

Good luck with your decision, and let me know how things go. If I can be of any possible help to you PM me and we can talk further.
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#5 of 23 Old 07-10-2007, 09:16 PM - Thread Starter
 
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Originally Posted by twopinknoblue View Post
Well, daytime sleepiness is a serious issue as far as I am concerned. How can you possibly have a joyful life if it's spent in a sleepy fog? Just because your DS isn't behind developmentally, or academically doesn't mean that there aren't other issues occuring with his lack of sleep. Nor does it mean that if left untreated these issues won't arise. The lack of energy associated with pediatric OSA is often the first step toward future obesity, which in turn is a MAJOR cause of adult OSA.
You are right that sleepiness is no fun. He seems to fall asleep in the car but it isn't as though he can't stay awake on the couch or anything. He is not overweight but in fact he is my body type - very lanky and lean. I do know that he would feel better if he were getting proper oxygen at night - that is a no brainer.


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Originally Posted by twopinknoblue View Post
The fact that your DH had a tonsillectomy as a child and now has OSA again doens't mean that is what is going to happen in your son's case. There is a chance that OSA may be hereditary, but it's likely other factors occuring (deviated septum, atonia of the upper airway, dental issues, etc. Even being slightly overweight can lead to OSA, depending on where your excess adipose tissue lies).
My husband had the surgery twice as a child and has never not had sleep apnea in the 13 yrs since I have known him. He is too stubborn to demand assistance from his Dr though so it's untreated : It isn't as severe as our son's though - usually it's just extremely loud snoring and a bit of gasping here and there. It does run in his family - uncle and grandfather have diagnosed OSA. No dental issues known. I do think DS has enlarged tonsils but he also has a large tongue that seems to block his airway when he sleeps.

Thank you very much for all of the professional advice - I will update after our appt later in the week.
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#6 of 23 Old 07-10-2007, 10:04 PM
 
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Subbing to this, I would love to hear your decision/outcome, as I am just starting on the road to getting my 4yo son diagnosed. Has an appt. with a specialist this Thurs. and odds are a sleep study to follow.
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#7 of 23 Old 07-12-2007, 12:51 AM
 
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My now 11 year old had his tonsils and adenoids out at age 3 due to sleep apnea. Total change around in behavior, attitude, along with a corrected speech impediment caused by the adenoids being so large (effecting his hearing).

I can only say positive things, but I think most of the reason have alreayd been pointed out!
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#8 of 23 Old 07-12-2007, 12:54 AM
 
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My 10you DD had her tonsils/adenoids out earlier this year for sleep apnea. It has made a huge difference. After healing, she was so happy because she felt like she could finally breathe. She's always had a hard time breathing through her nose. Anyway, the surgery was simple, the first few days of recovery were hard but we would do it all over again if we had to.

: Mom to a wonderful teen girl, a happy little boy and a cute baby girl
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#9 of 23 Old 07-12-2007, 07:47 PM - Thread Starter
 
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Well we saw another ped ENT today and he recommends the surgery. He rated my son's tonsils a 4 out of 4. They are almost touching. He showed me and they do look very swollen. Our primary care ped had checked and said they looked fine a few months ago, our naturopath said they looked a little swollen and the last ent said they looked a bit enlarged. So it does appear that depending on the day, they are swelled less or more. That leads me to wonder whether we could address the issue with diet or something less drastic as surgery. I guess i'm still hoping that we don't have to remove body parts but I know we will probably have to.

Unfortunately, ds was in the room as the ENT described it to us (we had arranged for care outside in the waiting room so we could talk freely but it didn't happen) He was horrified by it and said he will NOT have the surgery. We have a lot of work to do with him. He is a very sensitive soul and will surely be traumatized by all of this.
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#10 of 23 Old 07-13-2007, 04:13 AM
 
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Ds1 had horrible sleep apnea, and because of it we had his tonsils and adenoids removed when he was about 4.5yo. My only regret is not doing it sooner. I agonized over the decision, and it was the best thing we ever did. He was able to sleep, his behavior improved, he hit a growth spurt (the lack of oxygen was actually stunting his growth), and he got his sense of smell back (his adenoids were so big he couldn't smell anything). Even though he never got ear infections or tonsillitis, he got sick much less after his tonsils were out. I think it's because the lack of sleep was affecting his immune system.

I am try to take a "natural" approach to almost all health issues, but we explored every avenue prior to having the surgery, and nothing helped. I'll never forget hearing how quietly he slept in the recovery room, or two days later when he commented on the smell of something. Dh and I looked at each other and almost cried.
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#11 of 23 Old 07-13-2007, 05:55 AM
 
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moving to health and healing

"Have faith in yourself and in the direction you have chosen." Ralph Marston

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#12 of 23 Old 07-13-2007, 10:31 PM
 
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DS 18mos has sleep apnea due to what we believe is enlarged adenoids though it hasn't been confirmed by x-ray yet. He has had a chronic runny nose since February and hasn't been able to breathe through his nose for months - he also calls me Ba-Ba instead of Mama b/c of his congestion and has difficulty breathing and eating at the same time. We've been to countless Dr's who keep prescribing antibiotics for ear infection (which I'm now questioning). We finally saw someone good who explained what is really going on. The prescribed Flonase to get us through until we can line up surgery. Has anyone used this????? It's not recommended for children under 4 but he said it was okay (he's a ped at Sick Kids Hospital in Toronto so I'm leaning towards trusting his judgement).
He's also sending us to an allergist b/c he feels this is what is actually causing the adenoids to swell in the first place.
Glad to read your posts!
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#13 of 23 Old 07-13-2007, 10:49 PM
 
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One thing to remember is that tonsillectomies are almost impossible to get once you're an adult -- it becomes too dangerous.
I would definitely look into root causes -- why the tonsils are enlarged in the first place because there may be something else, a food allergy or intolerance. I'm convinced that's what causes my sleep apnea. My brother has a CPAP and he hates it, but he does sleep better with it now.
My son seems to have it, but I'm just exploring it, because right now he still nurses to sleep and cosleeps, so I think a sleep study wouldn't work for him.
I think there may be homeopathic treatments for sleep apnea as well.

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#14 of 23 Old 12-13-2007, 01:10 PM
 
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Digging up this old thread, as my 4.5yo finally had a sleep study and I was shocked to learn he struggles to breath/stops breathing as many as 20 times per hour! Severe Obstructive Sleep Apnea per the Dr. though most of his episodes aren't a stop in breathing (apnea) but a struggle/gasping in breathing (forget the medical term, begins with an H). We are going ahead with the tonsil/adenoid removal in about a months time. Will post again post-op with how it went.
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#15 of 23 Old 12-13-2007, 04:52 PM - Thread Starter
 
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We don't have much of an update to share. Things improved and have now worsened again as the weather has gotten colder. This leads me to wonder if my son's night apnea/coughing is related to the winter dryness and heat sources. Who knows. So far we are glad to have decided against surgery. We're taking a wait and see attitude for now. We visited the first ENT again in September and she said that he will grow into his tonsils as will all children but it's a matter of what his quality of life is like *until* he grows into his tonsils.
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#16 of 23 Old 02-19-2008, 04:23 PM
 
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Originally Posted by Loki View Post
Subbing to this, I would love to hear your decision/outcome, as I am just starting on the road to getting my 4yo son diagnosed. Has an appt. with a specialist this Thurs. and odds are a sleep study to follow.
You say you were suprised by the results of the sleep study...what were his symptoms that caused you to be concerned that it was sleep apnea in the first place? I'm trying to figure out if my son has obstructive apnea or not.
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#17 of 23 Old 02-19-2008, 04:46 PM
 
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Good question - I guess I wasn't clear. I knew he had apnea just from listening to him (try to) breathe at night - very loud snores, snorting/gasping awake, very physically restless all night long, never well rested, frequently falling asleep for the night on the drive home from daycare (i.e. asleep at 5pm and not able to wake for dinner once home!)

What I was surprised by was just how often (the 20+ times per hour) that he was having disruptive episodes, either apneas or hypopneas (the word I was searching for in my prior post).

If you're wondering about your son, is there any way you can get a sleep study done? I wouldn't have wanted to have any procedures done without knowing for sure that apnea was the issue, as well as just how bad it was - our ENT guy said if it were mild, sometimes the kids can wait and see if they outgrow it w/out surgery.

I also see that I never posted an update: DS had his tonsils/adenoids out in mid-January, and he is a different boy. Sleeps so quietly and soundly, is SO energetic (though I never would have called him un-energetic before!), eats like a horse now, and just generally copes better with the ups and downs of life as a 4yo. He used to have major meltdowns over teeny tiny issues, those have evened out a lot, I think due to him having better emotional reserves now that he's well rested. For him, it was the right course, though I was nervous about the surgery.
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#18 of 23 Old 02-19-2008, 07:29 PM
 
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I just wanted to add my experience here too. My dd also had sleep apnea and I had no idea how much it effected her until we saw an ENT who suggested tonsillectomy and adnoidectomy. I was understandably nervous about my then 2 year old undergoing this surgery and started researching it; and also learned that sleep apnea can lead to many serious problems down the road. DD would snore so loudly and kind of choke in her sleep a lot and was SO restless in her sleeping (I know because we cosleep and it was hard on us all). Anyway, she was also underweight; which I didn't think was related until after the surgery because now not only does she sleep soundly, but she went from below the growth chart for her weight to the 50th percentile in only 2 months! The ENT said her tonsils were so big they overlaped, so I'm guessing it was difficult for her to swallow. She is also more active, social and more independent. Anyway, it's a lot easier looking back on the surgery than it was trying to decide if it was the right thing to do before we did it, but I'm SO glad we did it.

The surgery itself wasn't as bad as I thought it would be either. They kept her in the hospital overnight and dd complained more about the IV than anything else She also ate mac n cheese, peas and bread like 2 hours after surgery (and hasn't stopped eating since, LOL)
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#19 of 23 Old 07-18-2008, 09:37 AM - Thread Starter
 
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Yesterday we saw one of the original ENTs again. It has been a year. We cut out dairy several months ago and saw immediate results. The ENT looked at my son's tonsils and adenoid and said they are significantly smaller. :

He still has some coughing issues and excessive earwax buildup which we are working on but we are so grateful that we did not do the surgery.
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#20 of 23 Old 08-03-2013, 12:36 PM
 
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Jazzharmony how is your son now? are you still avoiding dairy?
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#21 of 23 Old 08-03-2013, 02:00 PM
 
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Quote:
Originally Posted by jazzharmony View Post

Yesterday we saw one of the original ENTs again. It has been a year. We cut out dairy several months ago and saw immediate results. The ENT looked at my son's tonsils and adenoid and said they are significantly smaller.
:


He still has some coughing issues and excessive earwax buildup which we are working on but we are so grateful that we did not do the surgery.

This is what worked for us!

Bring back the old MDC
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#22 of 23 Old 08-03-2013, 08:42 PM - Thread Starter
 
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It has been 6 years since my first post - wow! My son is still not eating dairy and his sleep apnea has not returned. smile.gif
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#23 of 23 Old 08-21-2013, 08:02 PM
 
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That is great news!!
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