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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?

EarSlaps Tue 28-Jan-14 13:37:26

Well, the consultant was pretty impressed with the size of DS 's tonsils! So he's recommended adenotonsillectomy, plus he noticed some glue ear so they're going to do a hearing test and potentially put grommets in one or both ears!

BUPA have now okayed it so it's just down to getting it booked in. Because he's so tiny (4yo but only 13kg/29lbs) he might have to stay in overnight. It will be in the private hospital- it's a big hospital so they have a dedicated pediatric care team.

Hypo- that sounds so scary. DS never really puts anything in his mouth he could potentially choke on- it's all soft food or tiny bites. The consultant said it's really common for children to eat better and gain weight after the operation.

Nervous, but relieved. This should really help, the better sleep and better hearing alone will improve his quality of life no end. Fingers crossed it helps the eating too.

mawbroon Tue 28-Jan-14 13:55:02

It is also worth investigating the possibility of tongue tie.

DS1's ties went undiagnosed until he was 5yo and had many of the problems you describe - snoring, chewing, eating a few mouthfuls then saying he was full (he was swallowing down air), refusing chewy food, ear trouble etc.

He also had gut issues and bouts of apnoea and a very high narrow palate which restricted his nostrils leading to mouth breathing.

We had the tongue revised and he is having orthodontic treatment to widen his palate. All is good now!

Procrastinating Tue 28-Jan-14 14:03:41

My son had exactly the same problem OP. Huge tonsils, poor eating (fear of food in fact), very thin, snoring and sleep apnoea (I filmed it and you can do a test if you ask your consultant), glue ear discovered later.
He had he tonsils and adenoids out at age 4 - an overnight stay and it was fine. The sleep apnoea stopped and he put on weight eating more of his usual foods.
He is 9 now and still won't eat normally. Not being able to swallow properly has left him with a psychological problem with food. I thought this would go away, but it hasn't - if I were you I would look into getting some therapy for your son too.

Best of luck.

millymolls Tue 28-Jan-14 14:14:27

Good luck. Hope it all goes well (mine DS had adenotonsilectomy and grommets in both ears)
What we hiave noticed is his appetite increased significantly and that made a huge difference to my own DS eating - i would say that like Procastinating, my son also does have other issues with food - textures really and an underlying 'fear' of trying new food - he HAS come a long way and from a size and health perspective is a very different boy to the one pre-op.
Hope you have lots of success with your own child

EarSlaps Tue 28-Jan-14 14:19:02

Interesting mawbroon, he had complete tongue tie which was snipped at three days old. I think he does have quite a high palate, certainly breastfeeding was difficult even after it was snipped. We'll just have to see what happens after the op.

Yes, he is scared of foods, gets very stressed about trying any new taste or texture (he knows he likes banana taste but will not try them at all even though he wants to). When we went to the dietician I remember saying a psychologist would probably be more appropriate for his eating issues. We did a snoring video too smile.

Elibean Tue 28-Jan-14 19:47:06

Yes, OP, dd2 was the same - at the age of 2 she almost stopped eating solids and looked like a starving spider with black bags under her eyes. She also had sleep apnoea.

I would hot foot it to ENT! dd's life, and ours, changed enormously after her tonsils and adenoids came out. Good luck, let us know how you get on.

EarSlaps Tue 28-Jan-14 20:40:41

Yes, huge bags under the eyes!

DH and I are both agreed that it's worth going ahead, so I'll ring tomorrow and try and book in for the op.

mawbroon Tue 28-Jan-14 22:19:25

Earslaps what you describe sounds like an anterior tongue tie, but it is possible to also have a posterior one and/or a restricted upper lip. Many significant ties are missed because often the tongue can look completely normal to the untrained eye.

It is very common for high palates to be caused by a posterior tongue tie. The palate is smoothed by the tongue whilst in the womb and beyond, and if the tongue movement is restricted, the palate does not smooth and flatten the way it should.

I will give you the benefit of my experience and tell you that the NHS are worse than useless with tongue tie related matters, except for the obvious anterior ones. Some do not even believe that posterior tongue exists <hits head off brick wall>

Where are you based? There are a couple of dentists who have trained with Dr Kotlow who is a leading expert on ties. Unfortunately, one is only dealing with under 1s and over 6s, but the other is doing all ages.

bobkate Tue 28-Jan-14 22:24:43

earslaps I was the one that didn't want to hijack! We've decided it's worth doing too. My DD also had a tongue tie and has had bouts of glue ear in the past. We won't hear anything for a few weeks I'm sure though, but I'm quite pleased there's a bit of a delay. I'm hoping that by the time we get to the top of the waiting list it'll be more spring like and less likely for colds and bugs to be about. Pleased also that it means it'll be done before she starts school full time. Will be keeping an eye out for any news on your DS's op.

EarSlaps Wed 29-Jan-14 07:08:27

Both my boys had anterior tongue tie snipped very early on. I think they both had lip ties too (only noticed when ds2 was about 1, then I inspected ds1 and it looked like the remains of one). I will mention it to the consultant and see what he says. Looking at symptoms of tongue tie, I think it's very likely both DH and I had some level of it but it wasn't really thought about in the late 70s. I'm in Bristol mawbroon.

Glad you're getting it sorted too bobkate. I wish we had known about it ages ago so we could have sorted it before he started school. I'm certainly going to keep an eye on ds2 for any symptoms of tonsil problems as his are big too.

mawbroon Wed 29-Jan-14 10:12:48

Be prepared that an ENT consultant will dismiss any link with tongue tie.

EarSlaps Wed 29-Jan-14 12:58:14

20th March!

bobkate Wed 29-Jan-14 14:36:29

Fab! Will be back to hound you for preparation/recovery tips as no doubt ours will be after you! smile

EarSlaps Tue 04-Feb-14 15:45:01

Well, the hearing loss is quite severe, so he's having grommets put in at the same time as his tonsils are taken out. Feel quite bad I never noticed really, but his teacher was surprised by it too as he doesn't seem to struggle in class. He does switch off a lot though and go into his own world, so I suspect he has to work quite hard to listen sometimes.

MissLivvy Fri 07-Feb-14 15:19:44

My DS had tonsils removed at 12 by NHS. Never really had many infections but years of difficulty swallowing food, ENT consultant recommended removal due to size and slight asymmetry. After op said they were biggest tonsils he'd ever seen! DS 16 now and haven't looked back, no problem with eating now.

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.

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 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.

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.

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 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.

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.

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

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.

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.

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