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.

Just sorting out what to take and had to come and check what you suggested. Tom doesn't use a pillow, but has about 20 cuddly toys in his cot, lol. Was your daughter in a bed or cot? More worried about there only being beds, as Toms never slept in a bed overnight, except when he was still breastfeeding!

If I take too much, I can leave some in the car until we need it. DP will be coming home and going back the next day to bring us home. The car park is free for 4 hours, but they've covered the pay machines, so will need to find out how you pay for over 4 hours, lol. I'll try and remember to ask tomorrow at the pre-op.

I better take changes of tops for me and DP. Was planning to take snacks, but will feel guilty eating them in front of Tom if he's not eating. Will take his juice/cups and his fav snacks. Did think about taking some yoghurts in a small coolbag, or would that be excessive?

Thanks for the advice btw.

Toms op went well. We were in overnight and got back home around midday today. He's not liking having to take medicine though, poor man. Just need to get him eating now as he needs to chew to get rid of the stuff in the back of his throat.

It's a shame he doesn't eat sweets as they said ones like fruit pastiles and starburst are ideal.

Hurrah, Bexie, glad it went well and is over

Recovery is no fun, poor Tom. dd couldn't cope with sugary foods too much, as the sugar seemed to sting her throat...but she did eat crisps, soft sausages, ice lollies etc. She still lost (more) weight the first ten days though, got very thin but is all back on already.

We asked for paracetamol suppositories, and Voltarol suppositories as dd wouldn't take any meds orally - apart from antibiotics, for the first 5 days (then refused!). They were a godsend, if it gets rough I would suggest asking your GP for some, urgently - staying on top of pain meds is really important.

Hope Tom continues to do well, it seems to go in phases (ear pain kicks in around day 5-9, or did for dd, along with cough which was probably her trying to clear the scabs) but by day 12 dd was off painkillers at last.

As long as he drinks, he'll be ok!

Toms eaten most of his breakfast. It's very traumatic having to pin him down to give him his meds.

His heraing is fine, so they didn't put grommits in. Just took out his tonsils and adenoids.

The antibiotics are for a week only and we weren't told to get more at the docs either. The other stuff is just paracetamol and nurofen.

Sounds good, Bexie - though sorry you hvae to pin him down etc, yes, horrid.

dd didn't have grommets either, her hearing is/was fine - but ear pain is part of tonsillectomy recovery (its throat pain, but people experience it as ear pain - starts when the scabs are healing, I think).

Not much longer till ABs are over! dd only took them for 5 days...

Tom was ok taking the rest of his meds, taking it straight from the spoon. He is back to his old untalkative, not eating alot self. I wasn't expecting him to suddenly start talkng or be better eating over night or anything. His temper is still the same, pinches, hits and throws things. I just need to push a salt referral now.

Elibean, hows you daughter?

Hi Bexie, I'm glad the rest of the meds was easier! dd is, tbh, a changed child: no sleep apnoea, good appetite, sleeping through (the past two nights, she was so hungry the first few weeks she was crying for milk at night like a newborn) and gaining weight very fast. Temperament-wise, she's much the same - she just has lots more energy.

The eating better took about three weeks post-op, I'd say - and the sleep a month. I would imagine if any of Tom's not talking was down to tonsils, that would take about that to make a difference too? But I think yo'ure right about pushing for the referral, I would at this point, I think.

Are you disappointed about the behaviour part? Is he sleeping well?

Hiya, he doesn't snore or sweat at night anymore. so that's good. Behsvioural wise is frustration due to lack of speech. It also didn't help being cooped up indoors for 2 weeks. He has been more vocal and chatty. When I say chatty, it's more like humming the syllables of words.

We were supposed to have had a salt referral at the same time we had the ENT, but reckon they wanted to rule out hearing as a problem. There was nothing recorded about seeing a salt on his hospital notes, but the Dr we saw at our GPs did make the referral. The HV is supposed to coming round to see us after the incident with his arm, but they haven't yet. Maybe i'll call them again and express my concerns about the lack of speech.

Its such a relief not having the snoring and sweating, isn't it? And the gasping

Yes, makes sense that the behaviour is all frustration based, absolutely. Good luck with the SALT referral, hope its fast!