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Original poster

Sleep apnoea, stopping breathing and big tonsils

31 replies

MiniMousse · 18/10/2013 11:40

Hello
My dd is 5 and i think she keeps stopping breathing at night, but not totally sure. she snores like a steam train, then goes silent, although her chest is moving up and down (really looks like she's straining to breathe) but whilst this is happening, no air comes in or out of her nose and mouth. She then does a snort after a few seconds and then breathes again, this happens over and over and over...

Seems to be worse in winter. Her tonsils are huge and she has history of tonsillitis, glue ear, burst eardrums etc etc. last yr she saw a consultant about sleep apnoea and poss tonsillectomy, but he said as she's really tall 99th centile, he didn't think it was affecting her. I can't help but think it is affecting her, her sleep is appalling, constant night waking etc etc.

Does anyone relate to this? And has anyone had a child with 'winter' apnoea, ad it seems so much worse this time of yr?

OP posts:
millymolls · 18/10/2013 12:31

Hi, i can totally relate to what you said. My DS was like this completely - everything you say rings true. In addition my DS also was a very poor eater and lacked appetitie and due to quality of sleep at night was exhausted during the day and at age 3 still needed to have a good 2-3 hour nap in the afternoon (and often require waking)
He was plagued with glue ear, ear infections (inc perforated ear drums) and it was just awful
2 years we struggled with this and it was a rotten time all round really. I'm not sure if it was worse in the winter, but definitely worse when he had a cold/snuffly nose which i guess probably was more frequent in winter (mind you he pretty much permanently had one)

That was 4 years ago. He is now coming up 7, had his tonsils and adennoids removed when he was 3, and for us it was the best thing ever! The change in him was instant, literally overnight. Since day 1 of operation he sleeps from 8pm till 7 without a peep, dropped his afternoon nap immediately, has not had an ear infection since (keeping fingers crossed i dont jinx this!) and has boundless energy levels. If i wasn;t talking about my own son I seriosuly would not have believed this possible.

From my own experience i would recommend this, but clearly it is a big operation, not without risks - but for us the option to do nothing was not an option and thankfully everything worked out well.

If her sleep is affected she must be tired during the day which will impact her energy levels and ability to concentrate at school?

Pobblewhohasnotoes · 18/10/2013 13:05

I think you need to get re-referred and get her tonsils out.

Whereisegg · 18/10/2013 13:40

My ds had his tonsils and adenoids removed last year (age 5) due to mouth breathing/heavy snoring/sleep apnea.

Just for fun he slept perfectly at his sleep study Wink

I had to make a bit more noise at the drs, but pleased I did.
Surgeon said they were the biggest adenoids he had seen, and change was instant.

OneToThree · 19/10/2013 07:27

This was my nephew too. My dsis recorded him sleeping and showed it to the doctors.

Since having his tonsils out he is sleeping better, eating more and is just generally happier.
My ds was apprehensive about the op but it has made such a difference.

CaptainPoop · 19/10/2013 07:38

Ds1 had his tonsils and adenoids out when he was 4. The difference to his breathing and behaviour was incredible. Tell the gp you suspect Obstructive Sleep Apnea (sp?) And ask for a referral. If left it can cause quite a strain on the heart as lack of oxygen reaching the brain causes it to beat much harder to compensate. Many behavioural problems in kids can be due to this too.

runnervt · 19/10/2013 07:41

I recorded the sound of my ds snoring and the quiet bits when he stopped breathing and I think it was good evidence for the doctor to decide to go for surgery so would recommend that. I agree that you should ask for a second opinion.

Chucklecheeks · 19/10/2013 12:57

I could have written this post seven weeks ago. DS then had his tonsils and adenoids out and it's solved the problem. I would get a second opinion x

Original poster
MiniMousse · 19/10/2013 13:03

Thanks for all your replies. Did having the tonsils out really really solve sleep problems? She is such a frequent waker and moves and thrashes about so much I can't believe tonsil removal could really change things...can it?! (Hopeful!)
Also do they make the decision to take adenoids out before surgery or do they wait and look when they're under general? And did your dcs have a weird rotten smell on their breath (my dd has this, ESP at night)

OP posts:
Whereisegg · 19/10/2013 13:27

Ds had the bad breath, very similar to when you have a cold, and can't breathe through your nose which of course, he couldn't.
For 5 years Hmm

Yes the op cleared up the sleeping/snoring immediately.
I presumed he would be better after healing, but the first night he slept silently.
I camped in his room for 3 nights to facilitate giving him meds/soothing and it was quite eerie how quiet he was.

Adenoids were always part of the plan for my ds, I would make lots of noise about it at appointments if it is a concern to you, and yy to filming her sleep to show the docs.

Whereisegg · 19/10/2013 13:28

Oh, if you think the breath is smelly now, wait until after the op.

Pobblewhohasnotoes · 19/10/2013 14:07

Tonsil removal will help if they're obstructing the airway, same with adenoids.

Original poster
MiniMousse · 21/10/2013 17:58

Thanks all. I've managed to capture the thing I think is apnoea on film. Have got a doctors appt this week so will go along and see if we can get re referred to the consultant. Her tonsils do look bigger than normal bu not infected, so I'm thinking if this is how things are when her tonsils are just doing ther normal 'fighting off bugs' work, how bad must her breathing be when she does actually have tonsillitis? Poor old thing. Feel quite bad I didn't push it more with the consultant last yr, but also v v worried about putting her thru an op....

OP posts:
Original poster
MiniMousse · 28/10/2013 15:46

Just a quick update. I took my dd to the doc, armed with footage of her sleeping and the suspected apnoea happening. He confirmed that's what it was, and says he is quite concerned about it. So we're being re-referred to a consultant to see what he says about tonsils. Sleep is still a rare commodity in my house so here's hoping!

OP posts:
mawbroon · 28/10/2013 16:04

Glad to hear your doc is taking this seriously.

A high palate and tongue tie can also contribute to sleep apnoea, have you considered these as a possibility too? As well as the tonsils.

DS1 suffered a bit, but probably not enough for a diagnosis IYSWIM. It stopped after his mouth grew rapidly to accommodate his big teeth and we had his tongue tie revised. He has a high palate because of his tongue tie.

You might want to have a look at Brian Palmer's website he did a lot of work on oral structure and sleep apnoea.

Original poster
MiniMousse · 30/12/2013 23:07

It has been a while, but I wanted to update in case this thread is useful to anyone else going thru similar. Dd had her appt with the consultant. He says her apnoea is severe, she is going to have her tonsils and adenoids out in next couple of weeks. I can't believe it's taken five yrs of pushing to get them to finally do something. The sleepless nights have taken a huge toll and its emotionally draining listening to your child stop breathing multiple times a night, not to mention having them wake you up every night. Am v worried about putting her through the op, but also v hopeful it will help. Fingers crossed.

OP posts:
LilyFlower2222 · 30/12/2013 23:22

Hi Minimouse, my daughter was a heavy snorer, bad breath and she couldn't sleep if she had a cold/cough, severe sleep apnea. Finally at 8 years old she had her op (tonsils and adenoids) and she's a different child now. The surgeon told us her tonsils were huge and couldn't have left it any longer. It was the best decision for our daughter - end of tiredness, dark circles and poor concentration etc. it was hard making the decision but overall the benefits outweighed the risks. As with everything there's no guarantee, you just have to be positive. Good luck with your daughter.

millymolls · 31/12/2013 14:22

Hi, good luck with the op. If it has anywhere near the same outcome as my DS you will not regret it! We are so glad he had his tonsils and adennoids removed - best thing we ever did, and have never looked back. Here's hoping you have the same result

shivs1974 · 31/12/2013 14:27

Good luck with the op. DD2 had her tonsils/adenoids out when 3 after struggling to eat, sleep apnoea and losing weight. Best decision we made. Hope these "success" stories help.

MrsCharlesBrandon · 31/12/2013 14:36

So glad to hear all these stories! DD2 had her consultant appt yesterday to have her tonsils and adenoids out. She's 8. She was originally booked in for the op when she was 4, then had a growth spurt so it was cancelled.

Thankfully her consultant said just to let them know if we changed our minds. I can relate to everything here, the snoring, bad breath, constantly bunged, sounds like she always has a cold, and hearing problems.

This last one only came about yesterday when she informed us she couldn't hear properly out of her right ear. The op can't come soon enough!

Pooka · 31/12/2013 14:48

DD had her tonsils removed at 8 for the same reason.

Stinky breath. Apnoea. Mouth breathing.

Best thing ever. She recovered easily. Put on weight and generally has been much more robust and healthy ever since. Even though she had only ever had tonsillitis twice before their removal. I had BUPA and so we saw consultant privately and he instantly said they'd need to come out, at least in part because of the risk to her airways should she get tonsillitis. We would have had a long NHS wait otherwise, including sleep surveys etc.

Interestingly, she has since had orthodontic work and the orthodontist said that she had the tooth/jaw alignment of a text book mouth breather - it can have an impact on other parts of health too.

She has slept brilliantly since. Really good deep sleep with zero snoring and tossing and turning.

She had adenoids examined under anaesthetic but not removed as they weren't considered problematic.

Recommendations for post=op care:

WE were prescribed codeine in case the nurofen and paracetamol didn't hit the spot. Generally during the day she was pain free. She had the codeine at night. I set my alarm for a week (slept in with her) and gave her at least 4 hourly doses regardless of whether it hurt or not because I wanted to avoid the panicky desperation of pain while waiting for meds to kick in. She only had that once, in hospital, in the night after the op (was at 6pm. Out by 6.30pm. Awake and eating tuna sandwich at 8.45pm. Woke in pain at 3am just as the nurse was on her way to give another dose).

I got a humidifier for her room to keep the air moist and help stop her mouth/throat getting dry.

Mix of rough food and soft. The idea is that the rougher food like toast or crisps helps slough the scab off and stops the scab enlarging and resulting in bad bleed.

Lots of fluids.

Lots of talking books and dvds.

Keeping on top of the pain meds meant that she was able to eat and drink without pain and that also helps recovery.

Pooka · 31/12/2013 14:54

Meant to say, generally dd is now much less prone to picking up bugs. Of course it could be due in part to her age and a more mature immune system. But I do wonder whether big rotten tonsils and mouth breathing provides a very pleasant breeding ground, like a magnet almost, for germs and bugs.

DD had them done in year 3, just before she was 8. She is now in year 6, so three years later. She has had one day off sick from school since she had the tonsils out, compared with about 6-7 days on average over the preceding school years.

Elibean · 31/12/2013 16:28

Very glad to hear you got the op, Minimouse....sorry I missed your original thread. The relief when it's done is immeasurable, or at least it was for us. dd2 was just 2 when she had adenotonsillectomy as was losing weight, had severe sleep apnoea and looked like a spider with bags under her eyes.

She thrived from then on, and is now 7 and very bouncy Smile

Good luck to all of you with LOs with ENT issues, and if you're not getting heard by the docs, keep shouting!

MrsCharlesBrandon · 31/12/2013 19:56

That's really interesting to read pooka - coincidentally also DD2's nickname!

Pooka · 31/12/2013 20:06

Spooky! :)

Fingers crossed you get a speedy date for op and all goes swimmingly. DD was much better than I was expecting - but then I was expecting the worst and had a few months earlier gone through a bad run of (ironically) tonsillitis so I think I was expecting her to feel like I did when I had raging bacterial tonsillitis.

Original poster
MiniMousse · 31/12/2013 21:42

Aw thanks for all the replies and also post op tips. I'm trying not to worry too much, but am finding it a bit nerve wracking. Having said that I also can't wait to see if she'll sleep normally after the op. her sleep always looks like a real struggle, if you see what I mean, tossing, turning, thrashing, kicking, shouting and snorting. I can't believe that she'll hav deep and peaceful sleep like some of you have described post op!

OP posts: