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Huge tonsils and eating problems.

(65 Posts)
EarSlaps Sun 19-Jan-14 07:48:44

Ds1 (4 1/2) has huge tonsils and has always been a terrible snorer. He also struggles with eating- he is painfully slow to eat and really struggles with different textures. He has always only eaten soft foods and refuses anything chewy like meat.

I'd never connected the two, but it seems like they may be partially connected. I guess something large at the back of his throat would make it hard to eat and swallow.

Has anyone else had issues like this? How has it been resolved? I know they are reluctant to remove tonsils but can they be reduced?

We gave BUPA cover, so hopefully we should be able to get an ENT referral on that?

browneyesblue Mon 14-Apr-14 23:25:53

DS1 (just turned 4) had his op on the 31st. It went well, and they decided to take his adenoids out while he was under as they were also large.

They have play specialists at the hospital DS was at, and are great at explaining procedures, and distracting.

They used the 'magic cream', and he didn't notice the cannula going into his hand at all. Like others have said, one of the anaesthetists had DS in a little hug, with DS's arm around his back, while they found Wally together in a book. Weirdly, they gave DS gas after they put the cannula in, so that was what knocked him out.

He was very upset when he came round - crying hysterically sad I think it was a combination of being confused by the drugs, and overwhelmed by the situation. He ended up ripping the cannula out - not because it was especially painful, just because he didn't like it there. He's the same with plasters, etc. In the end, the iPad we brought with us calmed him down.

By the time he was wheeled back down to the ward he was calm. He saw the playroom was open, insisted on going in, and staggered around (drugs in his system) playing while DH and I tried to keep up/stop him bouncing into things. Within the next hour, he drank and ate 3 biscuits and a full lunch. He then ate 2 sandwiches and another couple of biscuits.

As he had sleep apnoea, he had to stay in overnight. It was a difficult night, mainly because he kept waking up and discovering he was attached to a monitor. He'd pull it off, the alarms would go off, repeat.

Now, 2 weeks later, he is almost completely recovered. He is so silent at night that it's a bit scary though!

DS still thinks that the hospital is great - he associates it with toys and fun, rather than pain or discomfort.

EarSlaps Mon 14-Apr-14 22:55:11

Yes, it was magic cream here too. DS was playing a new Lego game on the iPad and didn't even notice the cannula going in. Then they flushed in some saline then the anaesthetic. I think some hospitals can use gas, but not sure if they can for tonsils as they can't keep a mask on obviously.

Agree that you need pain relief. Not sure if you could try suppositories or if that would be worse? They are very strict on keeping up the regular pain relief.

bobkate Mon 14-Apr-14 21:42:00

friedfish I think we must have been quite lucky as our DD hasn't had lots of bouts of tonsillitis but I was pretty pushy with the GP to get a referral and when the consultant took a look and said it would be of benefit to her to have them removed it was such a relief. I would really push if you feel it would be of benefit to your DD.
earslaps ( yep Bobkate is a sort of blackadder reference...and hence why also bob is the name of our dog smile ) She's been very up and down today, veering between utterly distraught and beside herself with the pain to running around sword fighting with her sis 5 mins later. Still, we're on day 7 so hopefully we'll be on the way down again soon! Oh, and it's really weird the no snoring thing isn't it...keep checking her chest is moving she's so quiet at times!
whatadrama with my DD they put some 'magic' cream on the tops of her hands when we first got there. Then it was wiped off after 45mins. When it was our turn to go, we walked to the little room where they looked at her hands to see which had the clearer vein I guess.
She then sat on my lap with her arm behind me. I really cuddled her into me - so much so I didn't even see what was happening. One of the student nurses was great, really chatting away to DD to try to distract her. I really don't think she saw a needle, I certainly didn't. She obviously felt the cannula going in and started crying at that point, but the anaesthetic must have gone in pretty quickly after as the whole thing went by in a flash. The woman who gave the anaesthetic had come round to chat to us beforehand so I'm sure you could let them know about your DS's needle dislike and request it's not waved about in front of him.
We had a pre assessment appt where we could ask any questions...I would see if the same applies to you, then at least you can find out what their procedure is and if they can suggest ways to make it easier for your DS to process/cope with. I would also make sure you ask about how you can give pain relief after - there's no way my DD could have coped with the pain without regular pain relief - more so in these last couple of days - and so I think you'd really need to work that out before you go ahead. Good luck!

whatadrama Mon 14-Apr-14 14:09:21

Ds has been put on the list for surgery today so we now sit and wait for the date to come through.

He's another one who wakes constantly through the night, snores like a buffalo, constant tonsillitis and food refusal so we know its our only option to help him sad

Can i ask how they put them to sleep, will they put a needle near him whilst awake specifically a cannula?

Ds has a mod/severe language disorder and mild Cp so we wont be able to explain anything to him that he would be able to understand. He also hates hospitals and needles having had lots of negative experiences being treated for meningitis followed a couple of years later by glandular fever and pneumonia.

I'm scared we're going to freak him out especially because we also wont be able to give him pain meds after because he has massive oral sensory issues and wont allow anything past his mouth.

Any reassurance or words of advice will be welcome. He's 6 now so we could hold off and see if he grows out of it by 9/10 years old.

EarSlaps Mon 14-Apr-14 13:44:25

Poor DD bobkate (Blackadder reference?), we did find DS got worse around the week mark (scabs falling off I think), then improved a lot, so I'll keep my fingers crossed for you. The snoring stopping is great but it takes some getting used to.

Friedfish, I know a few children who have had their tonsils removed on the nhs without getting tonsillitis. Sleep apnoea should be reason enough. Our gp was happy to refer us to an NHS ENT, so you should push for referral. I did look into the self pay cost in case we couldn't get BUPA to pay, I think it was around £2200, so rather expensive.

FriedFishAndBread Mon 14-Apr-14 09:00:23

Your so lucky with your dh bupa.

My dd has massive tonsils, has always had problems eating, talking because they're that big she can't pronounce words properly and stops breathing in her sleep but as she doesn't get tonsillitis 5/6 times a year (usually once or twice) they won't take them out .

Or they would if I had a spare five grand.

bobkate Mon 14-Apr-14 08:53:24

Haha - serves me right! I was speaking too soon! Poor thing is really suffering at the mo. We had a bad night last night, very fretful. I'm glad I've been writing down her meds, otherwise I'd be getting really in a muddle. I actually think that she did too much playing yesterday, and looking back I'm sure that didn't help.
Earslaps glad your DS seems much better. I'm sure the eating will pick up slowly. My older DD is THE slowest eater it seems with no reason other than she's a slow coach. Although I remember being constantly nagged when I was little to hurry up a bit, so maybe it's a genetic thing!!
Anyway - I had been planning on coming back to the thread as I think I had made it sound like she wasn't struggling at all, which wasn't really the case, but it was ( at that point ) very manageable considering what she'd had done and I was thinking she was coping brilliantly.
So it seems for us, the whole day 5-7 thing being the worst, is how it is! Hopefully it'll ease back off again soon.
One wonderful result so far is that she's actually breathing easily at night for the most part, and apart from the odd snuffley noise, the snoring has pretty much stopped ..... YAY!!! So better quality of sleeps ( once the pain has gone ) to come!

EarSlaps Thu 10-Apr-14 13:17:12

Wow, glad it has been ok so far! Sounds like she's doing brilliantly, you must be very relieved.

DS seems much better now. Not too much improvement on the eating yet but definitely seems hungrier. Still struggling with eating slowly (hopefully that will pick up soon) and still a fussy eater. Seems less tired which is good and looks a lot less grey!

Fingers crossed your dd continues to recover well bobkate -smile.

bobkate Wed 09-Apr-14 22:31:16

Thought I'd update too grin. Well, madly touching wood, it seems that she may well be one who has got off quite lightly...well so far anyway. Like you earslaps the worst bit for me was when they put her to sleep. She sort of coughed and spluttered as though she was choking just as she went floppy and I had no idea if this was normal or not. Very disconcerting until the lovely nurse told me she was fine and it was normal. Anyway - after the lovely nurse had warned us that she may well be very distressed on waking, she came round shivering, looking confused and sleepy but not distressed.
Then she just coped fine with everything. She came round more, had a little to drink, a couple of mouthfuls of toast, went back to sleep for an hour, then was awake, more food and drink. We came home, all fine.
She didn't go to sleep until about 10pm but then she slept straight through without waking for pain relief. She's not been complaining of the pain very much at all - and we've been doing pain relief nearer every six hours, as opposed to 4. She's been eating and drinking fine. Played in the garden for a while today.
I think, unless we're going to hit a massive wall soon, we may have just been one of the lucky ones for which I'm so thankful.
Obviously I may well have to eat my words and wish I'd not spoken so soon but so far so good smile
earslaps hope your little one is continuing his good progress and back to tip top health x

bobkate Thu 03-Apr-14 17:46:04

Aha! Clever grin - see, I'd never have thought of that but what a fab idea. Hope he's had a good day back at school today and thanks again for coming back to help smile

EarSlaps Thu 03-Apr-14 14:56:12

I put a little bit onto a medicine spoon- makes it look more serious and like it might do something smile. Give as often as circumstances demand but all done with the same seriousness as giving medicine! You can also melt some honey into camomile tea and serve it at about blood temperature, that was how DS liked it.

He's back at school today, will go and get him in a moment and see how it went! Only in today and tomorrow and then 2 1/2 weeks of holiday.

bobkate Wed 02-Apr-14 22:39:45

Thanks for the pillow advice..I got some camomile tea today, no idea if she'll like it but I can try - how much manuka honey do you use and when you say you gave him a lot - in what format? Sorry for the probably silly questions!
Also thanks for the heads up on the 'what have we done' feeling. Tbh I've already got a bit of that but think it's just nerves.
Thanks SJ too - it's good to hear that your DD has shown such a positive result.

SJisontheway Tue 01-Apr-14 23:06:06

hi EarS. I posted early on this thread and just catching up with your updates. It sounds like he's doing well. Dd was a full 2 weeks before she got her appetite back, but since then she has been so much healthier and her eating, sleeping, general health have all improved so much. Good luck to your boy for the rest of his recovery.

EarSlaps Tue 01-Apr-14 22:41:33

All fine with the consultant today. Seems like we were unlucky really- we saw the boy who'd been in the next room to us and it seemed like he sailed through. He was up and about really quickly after, not too much pain and really perky.

Propping up with pillows helps a lot too with the pain. DS spent day times on the sofa with favourite DVDs and we tried to keep him upright at night when possible.

The sports bottle sounds like a brilliant idea. I also gave DS quite a lot of manuka honey- if he was crying for medicine and I couldn't give him any yet he had 'honey medicine'- soothing for the throat and made him feel he was having something. He's a big of a drama queen really.

Be prepared to feel a bit 'what have we done' at times if your dd struggles afterwards. It's really hard seeing your child struggling but I know it will be worth it in the end. He's got his hunger back a lot now. Still eating slowly but my friend said it took her dd a while to adjust. No snoring now either- it's really strange!

Good luck and let us know how you get on!

bobkate Tue 01-Apr-14 21:44:53

Thanks for updating earslaps - I meant to reply when I first read it but got waylaid. Glad to hear that he's more himself now. How did it go with the consultant today?
I'm getting nervous now! A week today and my little one will be hopefully home after her op but as for what to expect, I'm still not quite sure I'm fully prepared for what's to come.
I've been to get her tonsil fairy gift and I saw a new hello kitty sports bottle whilst out, which I know she'll love, so I'm hoping that'll be the encouragement she'll need to drink lots.
Okay so top tips if I can remember them all...
1) pain relief 5 mins earlier than due
2) lots of lollies, crisps, scratchy food & lots to drink if poss
3) plenty of bottles of pain relief in the cupboard
4) lots of different types of food
Have I missed anything obvious?

EarSlaps Sun 30-Mar-14 18:58:37

Another update for any watchers smile.

A week after the op was tough- he seemed quite poorly and more sore, we had a bit of dried blood around his mouth. I think it was the scabs falling off, as after that he has been much more himself. He's been perky and energetic (running around all afternoon), not waking up as much. Eating still a bit of a problem but getting there, I can imagine it'll be sore for a while. He's still having the painkillers but I don't notice a massive dip at the end of a dose any more.

We're seeing the consultant again on Tuesday, hopefully he'll be happy with the recovery.

EarSlaps Wed 26-Mar-14 11:05:05

Thanks Elibean. It must have been so hard with a 2 year old, at least DS understands what is happening.

Another bad night ("it really hurts"), he tried some pancakes this morning but struggled with that so more dry cereal and a huge bowl of crisps! Really trying to get him to drink, he's not a big drinker normally and only ever has water, milk or herbal tea so I can't even bribe him with juice. He's having quite a lot of camomile tea which is good and soothing.

He now says it's itchy, so I'm taking that as a sign it's healing. I know he'll be better before we know it, so I'm looking forward to that. No doubt he'll be ready to eat loads of chocolate for Easter grin.

Elibean Wed 26-Mar-14 10:22:40

Oh - and dd was given Voltarol suppositories (stronger than nurofen) and paracetamol suppositories, as her throat was too sore to swallow meds at all. Though easier with a 26 month old than older kids, as she barely noticed smile

Elibean Wed 26-Mar-14 10:21:26

Just wanted to wave and add some support for the ENT can be a very painful time for some (it was for my dd, and she was 2 at the time) though I remember lots of kids going through the op at the same time as dd seemed to bounce back with far lower pain levels.

My top tip: give pain relief (whatever it is) five or ten minutes before its due. So they are never without some. I used to set my alarm to give it in the night, before dd woke up. Also, keep it going for at least a week to ten days.

Also, really don't worry about eating for a couple of weeks afterwards...dd was like a spider to start with, all arms and legs and black eye circles, and got even thinner afterwards. But within a month (I look back at photos) she was eating better than ever before, and after three months was thriving as she never had.

It really, really is worth it flowers and you are all great to be supporting your kids through it.

EarSlaps Tue 25-Mar-14 20:06:24

Yes, tramadol came home from the hospital, I think we got about 20 tablets which we have to mix each in 10ml water and give 2ml. We're trying to use that one as little as possible (they told us to phase it out first). So we are using it at bedtime and only if he is really struggling in the day. He's had it twice today. It might be a private healthcare thing as my friend's daughter didn't get it after her nhs op.

Glad the throat spray has helped a bit. We're going with grazing mostly rather than meals, he has got through about half the box of chocolate cereal since we got home. He managed a whole pot of jelly too. I've read a lot of adult accounts of recovery which has made me very sympathetic.

It will be worth it in the end. I have explained to him why we did it and he seems to understand.

Loz1975 Tue 25-Mar-14 19:21:48

Hi , my DS nearly 6 had the same op 3 days before yours. Its been harder than I expected. He's the same, most meals end in tears with the pain. My GP gave me a anaesthetic throat spray which has helped when he finally agreed to let me spray.
I could have written your last post, up and down with pain levels. I asked if there was anything I could give that was stronger than paracetamol and nurofen and told no by my GP. Was your tramadol given by the hospital? Our day 6 peaked with pain again and he was quite upset as scabs were coming off. We are day 9 now, the nights are calmer now but more tears today trying to have lunch but been fine since. I also have to write down when pain meds given or I'd never remember.

Hope things are better for your DS, it'll be worth it when all recovered I keep telling myself.

EarSlaps Tue 25-Mar-14 18:09:34

Poor boy is still struggling quite a bit, he seems quite pained. He wants to eat but is really struggling and can only manage a few mouthfuls, he often ends a meal in tears sad. What he fancies seems to change all the time. Chocolate seems to be going down well, pancakes yesterday but not today, jelly sometimes and not others, icecream sometimes. Mostly he's eating dry chocolate cereal, at least it has added vitamins!

He had a lovely nap on the sofa this afternoon and seems a bit brighter now, but it can be up and down with painkiller levels. I can see he's getting a tiny bit better all the time though. It's only been a few days but to a 4yo that seems like forever.

EarSlaps Sat 22-Mar-14 07:31:09

The lady in the room next to us gave me the tonsil fairy idea smile.

We did tell him what was going to happen and gave him as much info as we realistically could. He's 4.8 though and I wanted him to trust us so I was as open as I could be. There are a few books about going into hospital, we borrowed an Usbourne book that talked about an operation on the ears. He had grommets too so it was quite relevant.

He's feeling pretty sorry for himself, last night was tough as we had lots of wake ups and mixing up tramadol at 4am. Ice lollies are great, they provide fluid and calm down swelling. He's just had one for breakfast, plus some warm camomile tea and a spoonful of manuka honey. We're struggling to get him to eat much else but it's early days.

Keeping up with regular pain relief is really important too- we're putting all the details of what he's had and when onto a whiteboard so we can make sure he's having enough and not too much.

bobkate Fri 21-Mar-14 15:43:08

Glad it all went well earslaps - we've got our date through - 8th April, so would love it if you could keep this thread updated with how your DS gets on with the recovery, etc. I too am dreading the anaesthetic.
Did you tell him much before hand? My DD knows her tonsils are going to go away ( I haven't said they're been taken out as such ) but wondered about getting a book to read to her....or to just wing it? Love the idea of a tonsil fairy - that's brill. I think I'm going to pinch that idea grin
I hope he continues to do well smile

EarSlaps Thu 20-Mar-14 19:39:33

Well, the operation was today.

I'm feeling quite emotional after the op! Watching him go under the anaesthetic was much harder than I could have thought. I was ok until then, then when his eyes rolled back and he slumped down I thought I would burst into tears. Then he woke up screaming about how much it hurt, and of course the screaming made it more sore. Still, they gave him some rather strong pain relief and he had a little nap (after puking all over himself). The tonsil fairy gave him a Lego stationery set and a hot wheels car, which perked him up a bit. He's there now with DH overnight , DS2 and I have come home and the stress has finally hit. I think we'll be in for a tricky few days but it will be worth it in the long run.

He was still snoring away when he was asleep, but that is apparently swelling from the op- they didn't forget the tonsils.

I really hope we get some improvement from this in his eating, but even if we don't hopefully the better sleep and hearing will be worth it.

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