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

I think it's the texture against their enlarged tonsils and one bad gagging episode which dies or doesn't lead to vomiting can just put them off of that particular food. It took DD a long time to eat normally again even after tonsillectomy, she was worse than DS and used to have to wash any food down with gallons of water. It's 6 years post op and she'll try new things now but it's been a long battle.

DS woke up from the op and immediately ate a turkey sandwich without gagging or needing water. It was like a miracle.

7 days after the op they have a shocking day with the pain but other than that both recovered pretty quickly.

That's really interesting.

My wee girl could honestly go a day on one slice of toast, half a banana and a waffle. She never seems hungry either whether her hunger is suppressed or if she has a fear of eating incase she vomits.

Funnily enough she has never ate chicken or meat, apparently the chewy texture can put them off with their tonsils.

Interesting. DD used to be not keen on meat either. Now (post op) she loves it. I hadn’t made the connection.

My son is still on waiting list for tonsillectomy (well I hope he’s on the waiting list, zero faith at present 🥲) but yes, he’s always liked salt! I have to stop him pouring salt on food. And when he feels his worst his “safest” food to choose would be salt and vinegar kettle chips. He’s always preferred very well toasted (burnt, even!) toast as well - I can only assume these crunchy textures are just much easier to swallow. He couldn’t eat things like mashed potato.

We had a huge amount of vomit Saturday night after eating too much. Then Wednesday morning I went into his bedroom and the bowl he sleeps next to was full of sick too. Felt so sorry for him, he hadn’t even come in to wake me! Just sat up, puked in the bowl with zero mess, went back to sleep. No five year old should be so experienced with vomiting 😔 That episode had been triggered by coughing I think as had heard him coughing a lot before I went to bed myself even completely propped up. He’s had a snotty nose so imagine it’s a bit of nasal drip combined with tonsil size.

It’s exhausting.

Oh and meant to add that he won’t eat meat either!!

They're used to chewing stuff so much to get it down but chewing meat lots actually makes it really dry and difficult to swallow. DD lives Quorn even now over meat.

Honestly when they have the op it's so shocking how much you put up with in terms of eating and sleeping. DD used to sound like a drunken obese man the way she snored!

It really is crazy how much it affects everything.

My daughter gets really poor sleeps, yet when it comes to bed time she gets a second lease of life and takes ages to go down. It's like she is that exhausted she is hyper. The days feel like years with me at the moment.

Sorry I'm using this as a support thread, those who have been through it will know how exhausting a slog it is. My daughter sleeps 12-14 hours at night with very bad sleep apnea (not a very restful sleep with frequent awakenings).

She is tired during the day yawning constantly but it presents more in a hyper overtired toddler way than a sleepy one. Then when bedtime cones she doesn't go straight to sleep, she plays and messes around in her room. Is it like a fear to go to sleep due to the apnea? Is it overtiredness?

Any one else experience?

Any old posters still around?

Going through this with my lo. On the list for tonsil removal. Have had a lot of vomiting during sleep recently 😓

How did symptoms improve? Anyone an idea of areas and rough wait times?

I have good news actually! My son is doing so much better. He turned six in October and is generally much taller/bigger. Not sure if he’s just “grown into them” but right now if his surgery date came through (we are still on waiting list) I wouldn’t want him to have the op as it just doesn’t affect us day to day anything like it used to. Aware this may just be very lucky but I am so glad.

He’s still a gaggy child who doesn’t want his top button and tie on for school but the vomiting and sleep disturbances is so SO much better.

I am in North West and it was November 2022 we were referred for the surgery.

Hope things improve for you soon be that via surgery or time x