How do I get my 2 year old's tonsils removed?

[JessJR23]

Hi all I am looking for some advice. My 2 1/2 year old son had massive tonsils which means he snores really badly, barely eats anything solid (he lives on milk, yogurts and I still have to puree his food) and he has had tonsillitis 4 times in the past 3 months (this is 3rd lot in 1 month). I think he has had it times before whwn i didnt recognise what it was. I also think it is affecting his speech somehow. Eveytime i have brought it up with health visitor they have said they are reluctant to take them out anymore. Last time I went to the doctor she said she would refer us to the hospital but 2 weeks on we haven't heard anything and the infection has returned. I am taking him back this evening for another appointment, what can I say to make them agree to take them out?? It is really starting to get me down seeing how poorly he is all of the time.

[minipie]

You need a referral from your GP to a paediatric ENT specialist. From what you say it sounds like this may be already in process but is taking a while. I would suggest you call the GP surgery to double check if your son's referral letter has been sent to the hospital already. If so then call the hospital, give the details and ask when you are likely to hear about an appointment and how long is the wait for an appointment. Beyond that I don't think you can speed it up unfortunately.

The hospital doesn't need to see him while he has the infection. They will make the decision according to the full history - so try to write down all the times he has had tonsillitis, how long it lasts/how severe (painkillers needed?), keep a food diary to make the point about his food, maybe get a recording of him snoring etc. Does he have any signs of sleep apnoea, for example is he very tired in the day even though he's supposedly slept 12 hours? Look up sleep apnoea and see if you think he has symptoms.

Your HV is right that taking out tonsils is less common than it used to be, however it is still done sometimes. The problem is that tonsils are part of the body's defence system so there are downsides to taking them out - it's for the ENT specialist to weigh up the pros and cons in each case.

Good luck.

[JessJR23]

Thanks so much for the advice minipie. Yes I have looked up sleep apnoea as he often holds his breathe while sleeping and he is very tired during the day, sometimes he will sleep for 3 hours if not woken up. He can look pale with bags and yawning a lot even when he has had at least an hour's nap. At nursery he usually falls asleep trying to eat his lunch! Good idea about food diary and snore recording. I am getting his nursery to write up their observations too.

[minipie]

Ok holding breath while sleeping IS sleep apnoea as far as I am aware so definitely mention that and, if you possibly can, get a video of him doing it.

[JessJR23]

I spoke to go and she said referal will take a minimum of 18 weeks for initial appointment! She said I could think about doing it privately but I've not been able to get an idea of cost. Anyone gone down that route?

[minipie]

I can tell you that a private appointment with a consultant would usually be about £200-300 but that would just be for the initial consultation and would not include any tests and obviously not any operations. The operation would cost a lot privately I expect since it involves general anaesthetic (I think?). Don't suppose you have health insurance?

[FenellaFerranti]

DS had his tonsils out for obstructive sleep apnea earlier this year. It has transformed his life. 18 weeks is the target the NHS is set from referral to op, you should be someen sooner. As pp suggested, check with the GP whether the letter has been sent then call and chase. We had to push push push and chase every step of the way, it was very hard emotionally but it was very worth it. Going private is not a quick fix option - hardly any private ent consultants will see children or operate on them, we tried desperately and got nowhere. I'm sorry you're going through this, all I can say is that by pursuing it you're doing the right thing for your child and when the op is done you will hopefully see fantastic results. In my experience ent consultants are happy to remove tonsils for sleep apnea, even if they are scaling back on ops for recurrent tonsillitis. If you can get a video/audio recording of his breathing stopping for your ent appointment it should help.

[JessJR23]

That is good to hear. My gp made out it was a minimum of 18 weeks until I even heard from.them.to arrange our first appointment! She even said 18 weeks was only a target! I asked her to check whether the gp we saw before had sent the referal and she said she would make a note, that doesn't really tell.me if it was sent. Would the receptionists know if I called them at the gp? Sorry so many questions!

[JessJR23]

And thanks for idea on cost minipie. No no private health care. Hmm will try chasing up!

[minipie]

Yes the receptionist team should know if it's been sent or not (if they keep decent records). Actually they would know better than a different GP would.

Good luck

[DameDiazepamTheDramaQueen]

Nephew had it done very young so it is done still they're just not routinely whipped out like they used to be.

Keep pushing. It's not acceptable to be fobbed off with ' go private.'

Keeping a diary as suggested up thread is a good idea.

[WalkerBait]

ENT agreed to remove my sons tonsils on 13th January. He is having them out in the 19th August. It took a long time for them too agree though. Sleep studies ect. He has grade 3 tonsils (take up 75% of his throat space). They are doing his adenoids as well.

Good luck.

[JessJR23]

Grr just took advice and phoned up. Referal hasn't been made although there is a note on the system. Feeling really angry as been sitting here for 2 weeks expecting something to happen. I am also 6 weeks pregnant and highly emotional so struggling not to cry right now. Doctor going to call tomorrow to explain. I will have to remember to keep a civil tongue in my head...

[Queenelsarules]

My daughter had adenoids and tonsils removed when she was nearly 4. She has glue ear, but also snored really loudly and had recurrent tonsillitis.They were only going to do adenoids, but as soon as the consultant saw her tonsils he agreed they were enlarged and said he was happy to take them out. Also told us that once children over about 2, adenoids and tonsils pretty redundant as immune system is mature enough to take over their function.

Keep pushing, it has been a long road for us but has been totally worth it, think before her op we were keeping tissue manufacturers in business, there wasn't a day for about 3 years when she didn't have a runny nose.

Good luck, I know how horrid it is to see them under the weather all the time.

[FenellaFerranti]

Oh that's frustrating! All I can suggest is making an absolute pain in the arse of yourself. I wasn't rude but I felt like the reception team and practice admin lady (plus a few of the GPs!) at our health centre hated me by the time the op came round as I hassled and called etc. I found it very uncomfortable and hard to do but it did seem to make a difference. In the end DS choked during a nap and actually started to go blue while at nursery. It was awful but it meant I went totally bonkers and basically lost my last shred of dignity and jumped on everyone non-stop. I was pregnant/had a newborn during the whole thing too so I do feel your pain, it's intolerable to we your child suffer and to feel the system doesn't care about them. I hope you get some decent results from speaking to the GP.

[Nowthereistwo]

My dd is nearly 3 and has obstructive sleep apnea caused by her massive tonsils (grade 3 like pp) and adenoids.

She was also sent for a hearing test as they diagnosed glue ear. Test showed she had hearing loss in both ears so will have grommets fitted.

It's taken nearly a year from referral to op date (should be sept). Seen 3 consultants 2 pro op and the middle one more conservative so sent for sleep study and allergy test.

We have a lot of hope resting on the results from op as she is always knackered, her speech is a bit delayed (can't hear) and always snotty as the adenoids are blocking her sinuses.

Keep chasing and good luck.

[DameDiazepamTheDramaQueen]

Yes, be very persistent, not rude but if you make yourself known they'll know something needs doing. Go off the radar and it's a case of out of sight out of mind. Good luck. Personally I would really push the sleep aponea side of things.

[minipie]

Oh how annoying! Polite but persistent as pp have said.

Suggest when the GP phones that you mention the sleep apnoea - you need to get this mentioned in the referral letter - may just help with speeding things up.

[MotheringShites]

Echo pp to keep being persistent. My DS had his tonsils and adenoids out at age 5. We went private after a diagnosis of OSA. His life transformed dramatically after the op, he was a different child, huge appetite and I'm sure he grew a foot in a few months. The trouble was though, his constant lethargy and inability to focus for the previous few years had left considerable gaps in his learning. He is just starting to catch up with his peers at nearly 8. Good luck!

[JessJR23]

Thanks guys, good to hear. Yes I will be firm but polite tomorrow. Sleep apnea seems to be the thing that gets them moving but am also getting his nursery to comment on his eating, speech and absences due to tonsillitis. Do you think I should be angry that the doctor didn't put the referal in 3 weeks ago like she said she would? I feel it is totally unprofessional to tell people something in an appointment and not go through with it. Do I have grounds for a complaint or am I just over reacting because I am hormonal?

[cestlavielife]

Keep calling and let them know you will take a short notice cancellation appt.

[redhat]

where in the country are you OP? PM me if you'd prefer this to remain anonymous

[redhat]

Asking because I can give you a recommendation for a leading paed specialist in this area.

[minipie]

I am not sure I would make a complaint just yet (don't want to piss them off until you've got everything you need from them!) but when you're chasing the referral I would definitely mention it - ie "There's already been a long delay because GP appears to have forgotten to make the referral, it's only moving now because I checked after X weeks, please can you make sure there are no further delays".

[minipie]

I do think it's crap but it's just one slip up - if they don't apologise and fix it asap, or if it happens again - then I'd complain. I tend to give people one error but no more iyswim...

[Abraiid1]

We only got my son's removed when he was 17 and had already suffered a serious bout of tonsillitis during his AS levels, with serious consequences for his university application. The NHS finally agreed to do it within a seven-nth period, which would have taken us to his A2s. So we paid to go privately and had them out within three weeks.