ENT referral for tonsillectomy (18 month old). How long did you wait or did you go private?

[Beeloux]

Hi all,

I made a thread last week regarding my son getting recurring tonsilitis since May. He has had it 5 times since the end of May and 4 doses of oral antibiotics, alongside 1 dose of IV antibiotics.

He was in A&E with it last weekend alongside a fast spreading non blanching rash (which he gets most times he has it meaning we get sent to A&E for blood tests). The paediatrician advised as he also snores and has sleep apnea (he still wakes up 5-6 times a night and also gags and spits out solid foods), that I was to go to the GP for a referral to ENT to get them removed.

We had the appointment and the GP referred him but couldn’t give a timeline on how long the waiting times are roughly. She just said it was ‘too long’ when I asked.

I was just wondering if anyone has been through this recently and how long did you wait from the referal from the GP to the actual tonsillectomy? Also, do they actually do anything if they’re under 2?

Money is tight but I’m really debating whether to get them removed privately. The GP said that it will probably get worse over autumn due to all the bugs going around (my elder son will be starting reception so no doubt bring these back home with him.

Any advice greatly appreciated!

You can check waiting times for your area on the My Planned Care website.

I hope your son doesn't have to wait too long.

Thanks @kab89 ! I just had a look it says 13 weeks. However I checked for gynaecology (which I was referred to in Febuary and still awaiting an appointment) and it says 11weeks so I’m not getting my hopes up. 😫Fingers crossed it won’t be too long xx

Yes, I agree it isn't always accurate but does give an indication. Could you ask your GP to refer to another hospital which may have a shorter waiting time. Where I am gynae is over a year to wait for an appointment. For your gynae appointment could you check whether there are any private hospitals offering NHS appointments where you might get seen quicker. I am a medical secretary in a GP surgery and where I work we do have some private hospitals offering appointments and they are usually considerably quicker than the NHS hospitals.

it could be 13 week to get the referral appointment but then the wait for the op could be a lot longer than that. You could go private but they don’t really like doing ops and kids this young unless completely necessary my nephew did have them out when he was 2 but that was because he had enlarged tonsils and when he got tonsillitis it could restrict his airways due to swelling so was seen as a needs must situation. I would get a private appointment and see if they are willing to do it with a kid his age.

@Beelouxmy daughter had very similar symptoms at that age; I can’t remember how long it took (it was 7 years ago, pre-Covid so wouldn’t really help you even if I could remember) but just to say that removal of her tonsils and adenoids made a HUGE difference, to everything, but most noticeably her ability to eat solid food was life changing.

I read that statistically if T&As are removed under 2 years old they are more likely to grow back - you might like to research that because for the sake of a few months it might be worth waiting. My daughter had hers removed (nhs) one week after her second birthday.

Also I had a friend who went private for the op for their 4 year old about 2 years ago and there was still a few months wait, even for private 😱 which was a bit of a shock. So no harm in exploring that option whilst you also wait for the nhs appointment.

Our 3.5 year old daughter is on the waiting list to remove her tonsils in the Midlands and the wait is 60 weeks so more than a year.

Private seems to be £2,850 for the intervention but I am about to get PMI through my limited company so that might be my option. No idea of the waiting list

My daughter has been referred to ENT. She was having issues with gagging and vomiting with solid foods so was seen my the gastro team but they couldn’t find any issues. Then speech and language team noticed she was mouth breathing and asked the GP to refer her to ENT. Unhelpfully they did nothing until I took her to the doctors a month after and the wait is 30 weeks from referral for an initial appointment! The GP did say her tonsils were large. In the meantime her snoring seems to be getting worse. These are her tonsils, do they seem large? She’s been having issues ever since weaning but we’ve been dismissed many times saying it’s normal to cough/gag vomit from food getting stuck. It’s so frustrating.

I hope the appointment comes sooner for you than feared.

Thanks all for your replies :)
@Ttcsecond my sons look just like that! I received a text today saying he has been referred and when I rang the wait is 25 weeks 😖

2 weeks ago I took ds to the GP who sent him straight to A&E (he had another petechial rash which he always gets with it) and they confirmed tonsilitis again. 2 days later he wouldnt drink anything and was sucking in under his ribs so I took him back and he was admitted with low oxygen (87). Needed nebulisers and oxygen.

The next time he gets tonsillitis I’m going to push for an urgent referal. If not I’ll have to get him seen privately. As he always gets a petechial rash with it he has to go to A&E for it rather than just the GP.

I really hope your daughter doesn’t have to wait too long! They keep brushing his gagging off too. He will only eat mashed food and still on a bottle. If he drinks out a sippy cup which he pretty much refuses to do he gags and coughs it up. Such a nightmare! X

Thanks for your reply @Beeloux

Gosh your poor son has been through it hasn’t he. I hope he gets the treatment he need soon. The amount of times I have been to the doctors and felt like a neurotic parent that I have been put off going! But you saying your son’s look the same has made me determined to go back to the GP. Even if they can’t speed up the referral at least it will a record of how big they are. She’s started with a bad cough today so praying they don’t swell more and cause more issues. Nobody has really looked at her tonsils when she’s been ill, I feel like I’ve let her down and she’s been suffering. X

My 5 year old had his very large (like yours there) tonsils out a month or so ago, after a year wait from going on the list. He was ok with food but mouth breathing and drooling all the time, snoring etc. No tonsillitis luckily. But now ds 18months is also snoring so I know we're in for it again at some point! He has apnea, especially when he gets ill so thinking of escalating to see if it can be sorted - if it took a year again then by the time he would be due he would be 2 and a half, so maybe they take that into account??

I also thought it worth mentioning for some of you especially OP whose kid is really struggling there is 'right to choose', if anyone doesn't know about that it's worth looking at. You can go to your gp with an issue and claim right to choose, if you've done your homework, saying for example 'I need my kid to have this tonsillectomy, I need referral for this op with such and such a hospital please' and ideally name a private hospital (that does cover NHS stuff) . The work will still be covered by NHS but often with much shorter wait times (just don't choose a clinic that's known for long wait times lol)

I may not have all the details straight there but your gp will be able to help I think. It saves being passed from pillar to post if you are confident with your case. This is often something used for asd diagnoses but actually applies to all sorts of issues you might need support with. I had a client who had used this to get a foot pain problem sorted, through a private hospital (bupa i think she requested) with a 2 month wait after being shunted around for years.

I would say go back and push for an urgent referral. My son was 2 when I took him to the drs for suspected adenoid issues. Really focus on the sleep apnea meaning lack of oxygen overnight, restlessness at night time and daytime tiredness if this is what he experiences. Also speak to health visitor about any concerns relating to speech.

I think, personally, combining these got us seen quite quickly by ENT who then quickly realised that poor DS had HUGE adenoids and glue ear causing moderate hearing loss. He had one op aged 2 but his adenoids were so big they couldn’t get enough of them. They waited for a bit to see if things improved with what they’d taken out but he had his second op a few weeks ago to clear the rest of them and put grommets in.

From first drs appointment to first operation was 9 months but there were a few appointments once we’d seen ENT - hearing tests, appt with surgeons etc.

Good luck, OP, it’s a bit of a battle but honestly life changing for them.

Thanks all so much for the replies and apologies for the late update!

Ds saw the ENT again last month. He currently had tonsillitis when he had his appointment and she’s referred him for tonsillectomy (he’s mostly getting viral tonsillitis now rather than bacterial but it’s happening almost every 2 weeks). She said the waiting list is only a couple of months currently which was a positive surprise!

He has a paediatrician appointment in 2 weeks and she said the tonsillectomy will depend on if they want to do further testing so it will be delayed if so. I’m hoping it goes ahead. Xx