Anyone have experience of severe sleep apnoea due to huge tonsils (kids)?

[Elibean]

I've posted about dd's forthcoming op (January) in the Child section, but thought I'd add a thread here as am getting a bit panicky

dd2 is just 2, has laryngomalacia (floppy larynx) and just been told also has big tonsils that meet in the middle. She's booked in for tonsil and adenoid removal asap, ie mid January.

Problem is, she's now hardly eating (will chew and spit out a fair bit, and drink lots of milk) and although she's tired and cheerful during the day, the nights are totally horrible for her. She gasps and chokes all night long, gets sweaty from the effort of breathing, and now has a slight cold/cough to boot so extra blocked nose and cough to contend with.

We have a humidifier, her cot head is raised, pillow under mattress, we've tried Karvol, Snufflebabe, Medised (which does help to a degree, she relaxed and sleeps through the discomfort better) etc but basically the ENT consultant said there was nothing else we could do.

I pick her up when she cries, but she's almost better lying down than upright when asleep.

Sorry for the long post, I jsut feel so powerless - and worried she'll go downhill too much to cope with the op in 4 weeks' time.

Should add that she's been like this for a while, but its got significantly worse in the last week or so .

I'm taking her to the GP tomorrow, but doubt they'll be able to help much - just wondered if anyone had experience/tips/advice?

Elibean - my ds2 had sleep apnoea due to tonsils - but without the added complication of laryngomalacia. He hardly ate and didn't sleep properly at all - to say he was grumpy was an understatement he was so miserable. I don't have any advice other than what you're doing TBH - I think the humidifier probably helped the most. I hope the time passes quickly and you get the op done on time. It was the best thing ever for both my dsses.

Thank you, Saggars, that does help....I think living with the powerlessness is the hardest bit. I get my knickers in a godawful twist wishing I could do something to ease the gasping/choking/distress.

I agree about humidifiers, we've used it every night for nearly two years...tis a godsend.

Am so glad your dses benefitted from the op, have a feeling dd will too - helps a lot to hear that

Hi my ds recently had his tonsils and adenoids out, and grommets fitted - he's 4. The main reason was severe sleep apnoea. In fact he was seen by a consultant on the one afternoon and the op took place 10 days later.

All I can say is that he is now a different child - in terms of behaviour, speech, eating, everything. You're doing the right thing. I actually feel awful we didn't act on our concerns much sooner (fobbed off by GP and hearing clinic). Good luck, the op itself and recovery was fine!

Thanks, dreaming, am beginning to really look forward to op day....not for the op, but for the results! I'm glad it was so helpful for your LO

Any tips for the op/recovery??

Much worse for me and DH than for ds2! The only bit that was awful was taking him into theatre and watching him put under the GA, but it was over very quickly, and when the op was over he was distressed for about 1/2 and hour then fell asleep for about the next 2 hours. Home the same day after they'd made sure he'd had something to eat/drink.

He was groggy for a couple of days afterwards, but I think as long as you stay on top of the pain meds you'll be fine - keep a chart and make sure you give them on time ie before your dc complains of any pain. We were also told to encourage ds2 to eat lots of scratchy food, cornflakes and crisps etc (I think to scrape the scabs off the wound?).

I can honestly say he was back to himself within 2-3 days - I was amazed. You'll be fine!

Thanks so much, dreamingofa...I can't tell you how helpful that was to hear!

SittingBull, you are an angel - thank you so much for taking the time to tell me all that. Yes, its hugely helpful, and the timing is perfect - just spent afternoon at A&E with dd2 as her eating had got so bad we took her to be weighed: HV fast tracked to GP, fast tracked to A&E (who can't do anything, of course!).

We're still on track for 13th Jan, and I'll hold on to your words and tell DH too.

Wish we could get her home same day, but her admission time is 11am and she has to spend a night in HDU due to extra risks associated with larynx problems. Will take dvd player though!

my dd3 has huge tonsils and when they are infected (which was often last year..not quite so bad tis winter) she suffers from snoring, gasping for breath etc..was even hospitalised one night.
The simple thing we do is roll her on to her side...try it..it makes so much difference when they are not on their back.

best of luck with the op, my dd1 and dd2 both had it and dd2 was eating doritos on the way home the next day!!

dd2 has slept on her side since she was born, but you're right - its by far the best position. Front isn't too bad either, but back is awful.

Thanks for the reassurance re ops!

Thanks again! Ice lollies v good idea. And dd2 is still very fond of her bottle, so would hope she'd take both water or milk from that, for comfort and hydration...won't try and get rid of it till she's eating/drinking properly minus tonsils.

I've sat on wards before, but my LO was 4 weeks old and would reliably sleep then...how on earth do you manage to go for a pee when they're clinging on to you? Its the main logistic I'm having trouble figuring out atm

A friend has a supply of paediatric paracetamol and voltarol suppositories (diclofenac) so am reassured that even if dd won't take medicine orally, we will be able to stay on top of pain meds.

All this is helping a lot....much appreciated.

Glad to hear that everyones DC has benifitted from having their tonsils/adenoids out. The Dr did leave it upto us as Toms tonsils were not the largest she had seen and if it wasn't for his behavioural problems, it may not have been suggested.

Elibean, how long did it take for the op date to come through? We waited 5 weeks for the ENT date to come through and the appointment was 4 weeks after that.

Just to add that the op was fab for my son as well. He had both out. I don't have any suggestions past what you're doing now though, sorry. Well, maybe something to dry out her nose? An antihistimine even, like Piriton.

The best bit of advice I got (from mumsnet, natch) was that it's normal for kids to vomit up blood afterward. Knowing that really helped when he started. It's just that it can drain to their stomachs and they vomit it back up. Plus morphine makes my son sick a bit, so there was that as well. It wasn't fun but knowing that it was normal made it not so alarming.

All the other advice is excellent, too! Be ready for a much peppier toddler after this is all over..

Do you have to starve them for 24hrs prior to the op?

Bexie, we saw the ENT specialist (again, it wasn't the first time) two weeks ago, and he made the appointment for the op on the spot. Its four weeks away, but if he could have done it last week he would have - just had a full list for airway cases that day, and now he's off for Xmas.

But I think dd's is fairly urgent

We have to give nothing but water from 7.30am, and no water after 10.30am, for an 11am admission - I imagine her op is around 2pm. Certainly not 24 hours!

Thanks, JJ, good to know about the vomiting blood part in advance

I'm giving her medised at night, with all doctors' approval (if any anti-mediseders are reading ) so that helps dry her secretions, and sleep through the discomfort. Plus Otravine nose drops.

Was a bit nervous about mentioning it, but I found the prior warning so helpful I thought I'd pass it on.

Good luck and hope time passes very quickly.

No, it was helpful, really. I'd always much rather know in advance about things like that!

Thanks

Tom is having his tonsils/adenoids out on Jan 28th. Won't know what time till the letter comes through. We still don't know whether we are doing the right thing though.

Hello,
I've just been reading all your posts as my son has huge tonsils, snores heavily with neck craned upwards and most of all it's affecting his speech- very nasal. Seeing all your posts on here has been really helpful and interesting as when we saw an ENT specialist I found her so unhelpful and came away feeling very confused. Think I may go back to Gp as she was in agrrement with me about tonsils affecting his speech. He is nearly 5 and a half and I don't know what to do for the best. Do you think removing them will help his speech become less nasal? Any response is most appreciated. Also I don't think he has sleep apnoea but he is skinny and breathes mainly through his mouth. Im so confused! Don't want unnecessary surgey but also don't want to leave it in case speech gets worse.
Thanks

Charlie1000, my ds's tonsils and adenoids were taken out mainly due to sleep apnoea, but it wasn't until I saw the consultant that I realised this was what was happening - as far as I was aware he just snored so loudly he was waking himself up. His speech was also nasal.

We were initially fobbed off by audiology tests showing his hearing and speech as normal, but his school (special needs teacher) identified his speech as being affected so we got a second opinion. The ENT consultant we saw the second time said his tonsils and adenoids were HUGE and had to come out ASAP and they were done within 10 days. He also had a grommet put in one ear. The consultant said the audiology test they use on the NHS is useless and the result varies from day to day because the secretions in the ear can vary.

Get a second opinion. We also saw a private speech therapist for an initial report, and that helped persuade the GP that there was something amiss (cost us £170, but we could've gone NHS if we'd been prepared to wait). Can you get the school on board too? IME you have to get a professional to agree there's a problem (teacher, GP, someone) and then suddenly everyone seems to agree.

I actually regret allowing myself to be fobbed off for over a year on this - I cannot even begin to tell you how much EVERY aspect of DS2 changed for the better - no more shouting, his behaviour got better (he was at last getting a full night's sleep), he eats with his mouth shut and enjoys his food, and we can actually understand his speech. HTH.

Thank you greenlawn, that really does help. I have been going round in circles with it for the last 3/4 months or so and kind of hoping things would just improve with time but i'm thinking I definitely need to get a second opinion. Thanks a million for taking the time out to reply.
Charlie x

dd2's pre-op appointment is on Thursday, and although we had a few quieter nights (admittedly with Otravine and Medised to help, on paed's advice - in case any Medised police are reading ) she then caught a minor cold and we're back to gasping, coughing, choking nights of the worst kind.

This definitely needs to happen. I'm definitely nervous, but preparing as best I can.

And am not sure why I'm posting again other than that, really

Hi Charlie, glad you found this thread too (am rubbish at links or would have attempted!) and got some feedback. Let us know how it all goes