Enlarged tonsils in DS 5/repeated vomiting/sleep disturbance. Wwyd?

[yesiwillhold]

I am losing my mind about my soon to be 5 yo DS who seems to be struggling with a range of symptoms and I’m unsure if related. The main issues are oversized tonsils and vomiting. I will apologise in advance for the essay but I am currently very upset and feeling lost with it all so any opinions would be massively appreciated.

Vomiting:
DS was a refluxy baby needing thickened formula. He was always on the smallest centiles (he is a twin so low birth weight anyway albeit full term) but tracked. I wouldn’t say he is small now though he is definitely slim. Still at nearly 5 years old he fairly regularly vomits, it’s been helped by limiting dairy but he’s still the type of child who will vomit if hysterically laughing/hurts himself/upset in the car etc. He can go weeks without vomiting but when he does start, it tends to go on and on (say ten days). I have previously worried it’s cyclical vomiting syndrome but there isn’t enough of a pattern I don’t think. He sleeps with a bowl next to him/we have bowls all
over the house. Sometimes vomiting is a one off but more often it isn’t. Sometimes also has fever, sometimes nothing else at all going on and he can throw up then carry on playing happy as Larry. I am unsure if this is food intolerance related/reflux he’s not grown out of/he’s “just a pukey kid” 🙄 or relevant to enlarged tonsils.

Tonsils:

DS has big tonsils. Doctors/dentists always comment on them. I will attach a photo of these large tonsils which we were told would get smaller as he got older (and maybe they still will) but they have not. He has only once ever been diagnosed with tonsillitis (as a baby) and never been on ABs for tonsillitis, though he does get coughs and sore throats. They’re often red but I’ve never seen them look pussy. He seems to gag on them and he really struggles with anything touching his neck (school shirt and tie have been a nightmare) and he really gags with certain food textures (has to spit food out as can’t swallow it) and when brushing his teeth etc. I’m not surprised at all given size of them. I don’t know if the vomiting detailed above is linked to how easily he gags because of the tonsil size. He gags just being near a bin for example. They also seem to affect his sleep - he always sounds so wet at night like he’s drowning/going to choke. Not sure if this is obstructive sleep apnoea but he does always seem much more tired than his brother and again this has been magnified since starting school. This really worries me.

I’ve always been concerned about everything I’ve mentioned but it feels more pressing having now started school and already needed time off. He also gets very anxious about being sick at school (and it’s likely he will!) and now I think we’re suffering from him saying he feels sick when actually he is nervous or just simply doesn’t want to go. He is otherwise very happy there but you know what kids are like if they think there’s telly and a blanket at home.

He has seen GPs over the years but probably less than we should have given pandemic and him otherwise doing well. General view previously has been “lots of bugs going around”, “one of those things” “he’ll grow out of it” and just watch his hydration if vomiting. We’ve been waiting since March to be seen by ENT for a more qualified view on his tonsils and I chased GP surgery today who confirmed the referral was never sent off and that the GP has now left the practice. GREAT! I am fuming as you can imagine. All this time I thought we were waiting to finally be seen at hospital.

So I now feel like we are at square one. I am tempted to go private for a consultation at least (would be self funded) and for someone more qualified to just at least look at his tonsils. Maybe they’re not that big in scheme of things? Similarly I don’t want to push him for a tonsillectomy if the vomiting is completely unrelated. I also have no idea how it works, would private consultant refer him back to NHS if surgery was advised?

The sleep and gagging just don’t seem “right” and I hate how upset he is. It’s breaking my heart.

If anyone has any experience of this sort of thing, what would you do? Would you start with trying to see an ENT or a more general
paediatrician at this stage? Do you think the vomiting is unrelated?

Sorry for brain dump. I was up all night with him (again!) and feel completely helpless.

thanks in advance

Hello.

I have just come across your post.
My son started to have the same symptoms as your child when he was 12months old and His throat looks exactly the same as your image, he is now 3.5 years old. We requested a ENT referral after numerous out of hours trips to the hospital and gp. As soon as the surgeon saw him at the appointment he said how big our sons tonsils were. He said it sounded as if he is snoring whilst he is awake and he is continuously breathing through his mouth where his airways are blocked. We never noticed how bad his breathing was as to us it’s been his ‘normal’.
We were put on the waiting list to have them removed in January and were told it would be 3years due to the covid backlog however, we have been given a surgery date this week so I highly recommend asking for the referral. Although I am terrified about the surgery I am so scared every night where he stops breathing and vomits, I can’t wait for him to get a peaceful night sleep.

I hope this is of some help. Good luck xx

Sorry I missed the part of your post where the referral had not happened.

Once we were told about the 3 year wait we paid for a private consultation. At the appointment the doctor actually did not recommend pursuing the private route. He said as our son was a child if there were to be any emergencies during the procedure it would be better to be in a NHS hospital as there would be more staff on hand not like the small private hospitals.

He sent us back to our gp and told us to ask for a referral to his Hospital the royal national ear nose and throat in London. We did this and we were seen for our first appointment within 2 months. It may be worth asking for this from your doctor especially if they never sent the referral in the first place they should rectify their error x

Thank you so much for replying and sorry to hear you’ve been going through similar. It’s so scary at night isn’t it!

We are in the North West and I’ve found an Alder Hey consultant that we could see privately for an opinion, but I agree I would not want surgery done privately I’d want full staff/ICU etc on hand for worst case scenarios. Apparently he could refer back to his NHS list himself, not sure if that’s correct.

I wonder if I spoke to the GP again if they’d now be able to expedite a new referral given we should have been on list for 7 months now. The interference with daily life is huge. And he just wants to be well! Of course it’s another two weeks just to see the GP 🥲

Good luck with the surgery. Would love to keep in touch x

My previous reflux baby aged 6 has just been prescribed gavisgon to use as and when, it made sense to me as reflux clearly doesn't just go away. Reflux could still be at play with him

I’d try the doctors again it’s an absolute referral to ENT. Of course you can also try the private too if you can afford. Some do work for both anyway,

Our ENT were quite good pre covid waiting lists .I would say that he is a prime candidate for them removed and our surgeons would want sleep apnoea testing and if that is proved to be of a risk they are then keen to remove asap. .

My daughter had issues with her tonsils (poor sleep and repeated tonsillitis), she was referred for a tonsillectomy for the poor sleep and I was told there was also the option of 'tonsil shaving' where they just reduce the size of the tonsils, perhaps that could be an option for your son as he doesn't get tonsilitis so complete removal might not be best?

I would go back to the doctors and ask once more for a referral and if that doesn't happen then go down the private route

Dies he snore at night. If he does get a video of him sleeping. he may well have sleep aponea. If he has, definitely get his tonsils out.

@Natsku a couple of our ENT consultants do that procedure. The recovery is easier. But personally I can't see the point of it and you might as well just get them out.

I can see the point if the issue is only size and not repeated tonsilitis, and especially with a younger child who might find the rougher recovery from an appendectomy quite tough

The younger ones bounce back really quickly. The older they get, the worse they are. Teenagers are the worst. They won't eat or drink, while the 2 years olds are chowing down.

Ah yeah good point, my friend's 4 year old recovered really quickly but my 10 year old really suffered for two weeks

In truth, children with enlarged tonsils and sleep problems recover without intervention.

Only 1 in 5 children who consult the GP with sleep apnoea (breathing difficulties) ever go on to have their tonsils removed. (Ref 1)

Although tonsillectomy is common, there is scant evidence that removing tonsils makes much difference in the long run, because no studies have investigated this. (Ref 2)

Tonsillectomy is not without hazards (Ref 3)

Ref 1: bjgp.org/content/69/678/e33.long

Ref 2: www.cochrane.org/CD011165/ENT_tonsillectomy-or-without-adenoidectomy-versus-no-surgery-obstructive-sleep-disordered-breathing

Ref 3: www.liverpoolecho.co.uk/news/liverpool-news/healthy-four-year-old-died-15001152

Really helpful info here, thanks all for sharing. I really appreciate it. I’ve taken some videos of his breathing at night/drooling/general snoring which will hopefully help when we are seen.

He has a private review on the 1st November and we can go from there 🤞

My DS was in hospital at 2 due to asthma but Dr walked.past and heard him snoring when he was asleep and referred for sleep apnoea test.
They then agreed to remove his adenoids but not tonsils despite me asking.
A different surgeon did the op and she called us from theatre asking for permission to.remove his "huge" tonsils as well.
He was a different boy afterwards, more awake, slept better -stopped the night terrors, his appetite increased 50% and so much more settled and happier.
I would pursue sleep apnoea testing as well.

The subject of tonsillectomy is a divisive subject, as can be seen from this chat, and within the medical world. It’s so hard to make an informed decision.

From reviewing the photo I can see that your son’s tonsils are very similar to my own son’s (age 6). He has grade 4 tonsils, the largest on scale.

He was a refluxy baby, but it was during weaning that the sickness really began. He would projectile vomit during most meals, usually after the last spoonful. We assumed he had developed a sensitive gag reflex. He was hungry but frustrated and dropped massively from a baby on 75th to the 2nd by his second birthday.

I knew there was something wrong when I could see his peers overtaking him growth wise but was fobbed off for six months or so.

It wasn’t until he was just over two that we discovered his tonsil size, and it all started to make sense. He’d been referred to a paediatrician because of failure to thrive.

We were also told that his tonsils would shrink with age, four years later they are no smaller.

He sleeps a good 10 hours per night but it’s not always restful. Even when it is, he still looks shattered and has really dark eyes. He snores and often mouth breathes. We’ve had two sleep studies conducted. One at 2.5 and one around 6 months ago. On both occasions his O2 levels were good and there was no evidence of sleep apnea 😅.

However, this left us with a tougher decision. If he’d had sleep apnea then decision making would have been easier. Do we try to ride it out? Are we just delaying the inevitable, having a tonsillectomy later on is much harder to recover from.

Whilst he may not have sleep apnea, something is causing poor sleep quality. Having enlarged tonsils can stop the necessary growth hormone from being released at night. My son isn’t a picky eater but definitely grazes better than when he’s faced with a meal. He often complains about food touching them.

He’s now at school, which takes a lot out of him. His behaviour has definitely deteriorated and he can be very emotional with anger outbursts. Something alien to us before now, although I accept could be part and parcel of development. However children are now pointing out that he’s the smallest in class, which as one of the oldest (and competitive by nature) is beginning to upset him.

I’ve read so many stories where children have thrived after enlarged tonsils have been removed. But I’m also terrified of the albeit very small risk of haemorrhaging.

We finally had a call from ENT today with an op date for next month 😱, however my sister is getting married around that time and my son is going to be a page boy. I couldn’t believe it. However they are going to call ‘sooner rather than later’ with another date. I’m bricking it! But will keep you posted.

We went to a private ENT for DD. She didn’t have the vomiting issue but was very tired in the afternoons and had awful coughs and chest infections ever winter (I believe because the mucus all went down into her chest rather than out of her nose/mouth).

He didn’t need a sleep study. He recommended surgery based on a) a sound clip of her breathing at night which showed pauses in breathing and b) a camera up the nose which showed the airway was very pinched between tonsils and adenoids. Both were removed and she is a changed child.

He used a new-ish process for tonsil removal where the “foot” of the tonsil is left (ie the last few millimetres of tissue where the tonsil joins the throat) rather than the entire tonsil being removed. This has an easier recovery and I believe is also less risky.

Hope this helps. Ours was covered by insurance so I don’t know what it would have cost if we’d paid, the consultation would have been about £250 but the op would have cost £££ I imagine. But it might be possible for them to refer you back to the NHS for the op.

@yesiwillhold @JadeElle4 @Vcmann86

Can I ask a really random question, when your children had poor appetites and didn't want to eat much, did they have a preference for salty foods? My DD's appetite has went to pot recently she used to be a really great eater. She too has tonsil adenoid problems and seems to have taken a likening for salt (even trying to lick the salt shaker when we're not looking).

I was wondering if the other tastes have been suppressed and this is the one she has most sensation from. I believe it is supposed to affect your olfactory system in a similar way to covid.

Any updates on your surgeries would be great too

@minipie did the Co ablation tonsilotomy help? I'm interested to know, as we have children having this done on my ward and I've always wondered if it's as effective as taking the whole tonsil out.

Absolutely. She was a different child after the op. No more snoring, no more endless winter coughs and inhalers, no more wanting to spend all afternoon lying down. She is my duracell bunny. I can’t compare to the full tonsil out, of course, but can’t imagine how it could have been more effective.

Just had another night time vomit 😭 third this week. I can hear her on the monitor, she almost snatches a breath, starts a coughing fit and then vomits all over herself. This is utterly exhausting to deal with and then to see her do distressed is heartbreaking.

Have a look at this page link and listen to the sound clip. Then listen next time your DD is asleep. Is there a build up and a pause just before when she snatches a breath?

@ENTnightmare I'm sorry for your poor DD. My son's symptoms were exactly the same as the OP's. He had a sleep study when he was 2 and they agreed that the tonsils were causing sleep apnoea. He was vomiting so much that he'd caused a tear in his stomach and he was regularly vomiting blood.

He had his tonsils and adenoids removed last April, just before he turned 3, and he's a completely different child. No more vomiting in his sleep, no gagging on food, no blood, his speech has improved, his appetite has improved. I'm so thankful our GP referred him quickly and that they were happy to operate quite quickly too. It's helped him tremendously.

2 of mine had tonsils out at a private hospital at a very young age due to recurrent tonsillitis causing sleep apnea and eating problems (including vomiting). Surgeon was experienced paeds specialist and said he did hundreds of these operations a year and there was very very rarely any complications. Sleep apnea, vomiting, problems swallowing food and recurring tonsillitis blighted our lives for longer than it should have and the operations changed both the children's lives and ours.

I wouldn't pass up the chance of them having a tonsillectomy at a large private hospital.

Thank you. It's the gagging and inability to breathe in her sleep that is putting the fear of God into me. I know her body kicks in eventually and she takes a breath but it's so hard to watch her go through this.

Did you find your eating problems come on all of a sudden? My DD used to have a great appetite but recently only wants, toast, banana, cereal, beans sausages and other fairly soft foods. Even fruit like strawberry and grapes that she used she love she doesn't take much now. I don't know if it is the acidic taste of this that she maybe doesn't like now.