Huge tonsils and eating problems.

[EarSlaps]

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?

Simple answer, yes can be connected. Go to see ENT Cons and discuss the snoring, eating issues. Having them out can make huge difference, good luck.

Thank you.

I think I'm going to video his snoring tonight (we noticed last night that his breathing was very irregular but he hasn't complained of a sore throat at all so I don't think they are infected). DH noticed them last night when they were playing doctors with a torch, so it makes sense of the snoring.

He often says he's hungry but then can't eat more than a few mouthfuls at snail's pace, and his sleeping is pretty fitful so it all seems to make sense. Thank goodness for BUPA cover through dh's work, I suspect that will make getting a referral considerably easier.

Eating has been an issue ever since lumps were introduced at weaning stage and he has always been 0.4th centile for weight despite having taller than average parents. He weighs 29lbs/13kgs and the NHS BMI calculator has him as very underweight.

Oh, and we have been to the HV and GP about his weight- we even had a dietician referral so I haven't been ignoring it. We just try to focus on getting as many concentrated calories into him but he's so fussy about textures and really scared of food. It's a constant worry.

Goodness poor thing. Great idea to film sleeping/snoring that will be more evidence for ENT bod. Sleep apnoea can be related and where I live they often do a sleep study before the op to see if child is stopping breathing momentarily in their sleep. I'm fairly certain from what you say that your ds will see a marked improvement in his quality of life with regard to eating if he has his tonsils removed. Your gp could refer you to an ENT consultant if you ask but if they haven't already made the links when you've been for advice then . Do pursue it won't you. Good luck.

Sounds very similar to my son, who was referred to paediatrician for low wieght, and terrible eating and while at the hospital feeding clinic happened to be seen by an ENT consultant who started questioning is sleeping patterns and other issues. From there on in the focus became his tonsils and adennoids and these were removed (when DS was 3)

What i can say from that is i) sleeping improved literally overnight and he turned into the most energetic little boy ever. ii) he's not had an ear or throat infection since (4 years ago now, touch wood!) and iii) while he is still fussy and is reluctant to try things his eating has improved significantly and in particular his appetite really increased (again liter\lly overnight). He is 7 now and in aged 7-8 clothes, and while still quite skinny no longer looks ill, and is on 50th centile (having dropped to the 2nd) and eats a quite wide variety of food (there is still room for improvement with 'wet' food like cottage pie etc)

His eating will most definitely be impacted by his ENT issues and while i'm not a doctor, and not qualified therefore to make diagnosis i would suggest that you definitely need to be referred to ENT!

Good luck

oh and it used to take my DS ages to eat even just a slice of toast - he used to nibble it like a mouse, small small bites. Now he is quite happy to just 'shove everything in'!

Thank you both, that gives me a lot of hope.

Well he actually has a sore throat today for the first time so is off school watching Wallace & Gromit with a nice cup of camomile tea .

I never pushed the weight too much as DS always had plenty of energy and was never poorly. However, recently he is alway tired and looks a bit pale. I give him supplements but it makes no difference. He started school in September, so I put a lot of it down to that, but even in the holidays he was lethargic.

Got an appointment with the doctor later on so will push for a referral, then DH needs to get on to BUPA to authorise.

Yes, lots of tiny little mouse nibbles here too! And fifty bloody minutes to eat 3/4 of a bowl of pasta the other day.

Oh and I wanted to film him last night but he didn't snore, but there was a lot of stop/start breathing.

Sounds like my dd. She had tonsils out at 3, but as well as the feeding problems and terrible snoring, she also had recurring tonsilitis.
Since then her eating and sleeping have improved vastly and she is a much healthier child.
Regarding weight gain, in the mean time, you could ask to be prescribed a high calorie milk shake like fortini. Dd had this when younger and her weight gain really improved.

I think we never really thought of tonsils as he's never had tonsillitis or complained of a sore throat before. DH has huge tonsils and gets at least one bout a year still (though it was much better last time when he actually bloody listened to me and gargled salt water early on), and ds2's look pretty large too (though no eating issues there!).

Not sure how he'd go with a milkshake- I made him one at home with milk and banana which he said was delicious but he only managed a few sips of it! I might ask though just incase it works.

DS had his tonsils and adenoids out at 20 months due to recurrent infections, constant snoring and (the clincher) sleep apnoea. I thought he was generally pretty healthy before the operation, but afterwards he had a massive growth spurt and his sleep improved dramatically.

The stop/start breathing you mention really needs investigating, in my utterly non-medical opinion.

It's definitely worth considering, OP - I won't pretend it was easy taking him for the surgery but it was so worth it. He's 14 now and as far as I can see has had no negative consequences of the surgery at all, only positive.

Well the gp was happy to refer. We're getting the appointment through bupa but they say they won't cover surgery if it's a sleep apnea issue, but should do if it's eating related .

Gp said with nhs we'd get a referral but be very unlikely to get surgery. So not sure where that is supposed to leave us. Depending on cost we could probably find the money I guess but it seems harsh to those that can't.

GP isn't the consultant so he's no idea about whether your DS would be suitable for surgery! Listen to expert!

I took DS(3) to see the NHS ENT consultant last week. DS gets tonsillitis continually, although he rarely complains about pain, and he also snores and has sleep apnoea.

I have lost count of the number of times he has had tonsillitis, even just in the last year. I took him to see the GP about the sleep apnoea last year, as DS is always tired, and he dismissed it out of hand. I got an ENT referral from a different GP, who looked at the number of times she had seen him for tonsillitis.

The consultant immediately recommended taking his tonsils out. Not for the never-ending bouts of tonsillitis, as I would have thought, but because of the sleep apnoea. He said it wasn't normal for a 3-year-old to be so tired (I have to wake him most mornings, otherwise he'd sleep to 9am-ish), and that sleep apnoea was a serious condition that could have long-term health implications. The op will be within the next couple of months (NHS), and because it is sleep related they will keep him in overnight. I'm nervous as hell, but I think it is the right thing to do.

You can ask for a night oxygen saturation test. Bupa unlikely to do this but ent at hospital did. Some do as in patient - I was lucky mine let me take machine home and return next day. It is plaster with light that goes round big toe and records oxygen saturation levels. Doesn't hurt. Have a good look at his cheast - does it have a hollow indent in it - pectus excavatum - can indicate apnoea.

Apnoea is one of the reasons they do take them out now as it effects concentration and learning. Both my two had tonsils and adenoids out within a few months of each other at 4 yrs and 2ys . So glad I did. You may find hospital a much beter bet than Bupa referal in this case as I don't think they would do this type of surgery.

Your GP is talking bollocks by the way - hospital will recommend surgery if he needs it - you will not need to pay. My ward had 6 child tonsil surgeries on the list both times I was there so there are lots of children getting their tonsils out. It is less common than usual - which is prob what the GP means. ENT decide not the GP.

Thank you all. The consultant we're seeing is private and nhs, so he can advise whether we meet criteria.

My friend's daughter had hers out last year and they had to write a letter justifying it to the health authority before it could be approved.

We're off to ENT today for the same thing. 2.3yo DS has sleep apnoea, with night terrors, sleep walking is very hyper at times but always has bags under his eyes. He's had several bouts of tonsillitis and ear infections (aparently related) and is a faddy eater. His solid intake DS improve when they finally diagnosed severe anaemia at 10mo (despite many Gp visits, we had to insist on bloods being done and he wound up in hospital).

I hope to god they say they'll do the surgery. It's awful seeing him like this - every time his breathing stops he jerks awake terrified and screaming and we're now at the point of poor DH camping on his bedroom floor every night after the first waking because he's too scared to go back to sleep :(

Good luck with it EarSlaps hope you get it sorted

We saw the ENT consultant privately throught BUPA - however, once he had determined that it was recommended my DS have his tonsils and adennoids removed, he then referred us back to his ENT Clinic at the local NHS hospital (he does both private and NHS). He stated reason for this is that they do not like to do these sort of ops in private hospitals because as NHS have more specialised paediatric care in the operating theatre and faster access to blood should anything go wrong. That scared the sh*t out of me when he mentioned that but in a way reassured me that in the very unlikely situation of a problem my son would be in the best place.

Good luck!

Best of luck ipswich (are you actually in Ipswich? I was born in Heath Rd hospital).

Very useful info thank you milly. Does sound scary but good as it sounds like they have the child's best interests at heart rather than just money. The private hospital we're going to does do paediatric surgery but then we are near a very good children's hospital too.

I was born in that hospital too but live up north now - mum likes to give me regular updates on the state of Heath Rd though!

Saw ENT consultant and she said they'll take his tonsils out and that was before she even examined him! He's getting the surgery done at a different hospital so he'll be seen by the specialist paediatric team (said the same thing to me millymols) so just got to wait for that appointment now. Bloody Gp led me to believe they wouldn't take his tonsils out and they only did it unde exceptional circumstances, which he said DS isn't . If stopping breathing isn't a good enough reason I don't know what is!!

I have genuinely dithered about posting this but if you are worried about eating issues please push to get your DS's tonsils removed. A friend of mine came frighteningly close to loosing her DS when he was 4 after he choked on a piece of food and even Heimlich manoeuvre couldn't dislodge it as his tonsils were too large for the food to come back out.

I'm saying this not to scare you but maybe as an extra bit of ammunition to put to the consultant. The hospital where this happened (not in the UK) changed their tonsil removing policies after my friend's DS's accident.

millymolls we had a similar experience to you - we went through BUPA but the op was done in an NHS hospital for the same reasons - plenty of specialist paediatric facilities on hand if needed. DS had a bit of post-op bleeding which was scary but not actually dangerous, and the staff were fantastic.

He was in overnight (I stayed with him) and home the next day - if I remember correctly he had to have a drink, something to eat, and a wee before we could take him home

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.