AIBU to be considering a tonsillectomy for my 5 year old?

[Bearhead1867]

Backstory-
my son has a very rare laryngeal cleft so has been under ENT from birth, he has a severe speech disorder and suffered with repeated tonsillitis for years to the point his consultant was going to take his tonsils out, then it suddenly stopped so we decided on a watch and wait approach.

Fast forward to now, apart from his speech the cleft hasn’t caused any issues and we were discharged from ENT, his consultant was absolutely amazing.

due to his repeated tonsils his tonsils are huge and full of crypts, they get full of tonsil stones and his breath absolutely stinks 😭 so on top of his speech disorder when he does actually talk the smell is unbelievable, he can smell it too and it’s breaking my heart.

Last week I was at an appointment for myself at a private hospital and out walked his consultant, she immediately came over asking how my son was and I told her, she said I should ask my gp to refer him back to her or I can see her privately to discuss options. Thing is my gp can’t refer me back to her because she’s at a main children’s hospital and they can only refer local. Due to his cleft I would only want her because she’s an expert in the particular location of his cleft. I would absolutely take him privately for this.

am I mad for even considering the tonsillectomy? His confidence is already in the ground anyway with his speech and now the breath issue on top is too much for him. It’s not his teeth etc it’s absolutely the tonsil stones…

not sure what to do! Help

Get it done! Its so unffaur to leave him like that.

Get it done, if to can afford it you will not regret it.

My DS has just had his tonsils and adenoids out due to reoccurring tonsillitis honestly it has changed his life.

He sleeps better,speaks more clearly and no more debilitating tonsillitis.

I will warn you though, the op recovery is quite tough.

Your GP absolutely can refer you to a tertiary centre- particularly if you are known to a consultant there. Don’t take no for an answer. They just need to send the letter there. I doubt an ENT surgeon at a local centre would be keen to take your child on if he was previously under the care of the tertiary centre where all his notes will be.

I’m a Tertiary centre doctor. I
wish him all the best with his treatment

I would definitely get them taken out. All 3 of mine had their's taken out at that age. They recovered so quickly. They were sitting up in bed eating that evening. I've watched a few teenagers and adults in my extended family get theirs taken out and the recovery was horrendous . Given his issues I would definitely get it done. Good luck whatever you decide.

Definitely do it.
My daughter suffers terribly with tonsil stones and they won’t pull them out. Her breath is terrible and every couple of weeks, she’s coughing up these horrendous things which absolutely stink.

My daughter desperately wants them out. I’m seriously thinking of starting to save so she can have them out privately.

I've never known anyone having complications from this surgery - I'd get it done!

As a sufferer of tonsil stones, I would have it done just for them if I could.

I would do everything I can to help my kids if I had the money.

Do it and good luck with it all x

Do it!

I was so poorly as a child with reoccurring tonsillitis and I had them removed at 11. Now 45, I have had strep throat once in my life in my early 30s and never had another sore throat again (except tlwhen I've had a cold so completely normal!).

Get it done, but only in a children's hospital, with a HDU bed booked in case it’s needed.

Recurrent tonsilitis can lead to other problems later in life. I had pytiriasis - horrible rash all over my body - at the age of 19 for almost two years, until they found that I had a chronic and hidden tonsil infection. Then I had the tonsils removed and bam, all my skin problems and throat problems disappeared. Honestly have them out as sooner than later - it's painful when it's done as an adult.

pubmed.ncbi.nlm.nih.gov/19882027/

Absolutely 1 million percent get it done for him it will make a massive difference to him and it’s so much easier to get them removed while they are young vs when they are older and more at risk of haemorrhaging.

ps: sorry I meant "guttate psoriasis" and I sent the wrong paper, this is what I meant: dermnetnz.org/topics/guttate-psoriasis

I would do it. Like PP I had guttate psoriasis in my twenties from reoccurring strep throat and tonsillitis. I would have tonsillitis virtually every six weeks at one point. I eventually had my tonsils out at 28 and was told by the consultant that it’s much more straightforward for small children to have them out then it is for adults where it’s considered major surgery and more dangerous. It’s painful as an adult too.

Do it! Tonsillitis on its own is miserable, I suffered dreadfully, mine were take out at 12, not soon enough.

My ds2 had tonsils and adenoids out at 3 and he was a changed child after. Grew like a weed, was much stronger and healthier and it made me realise how debilitating they were, mainly because they caused him terrible sleep apnoea but also because their size made it difficult for him to swallow and also the repeated infections just caused him to be run down. He never looked back. I would do it.

My son has a kind of rare thing, similar location to a cleft palate and his first consultant treats what my son has and cleft palate, as do the SALT team. He has some slight sound issues when talking, repeated tonsillitis, tonsils are so big they are affecting his sleep (snoring, not breathing for up to 11 seconds). He is getting his out next month. I've really changed my mind about it alot, but I think his sleep, breath, less time off school, etc will be beneficial for him. I also got my tonsils out a year a go. Tonsils stones and the bad breath had really affected my confidence so since it has been a relief. However recovery for me was awful, and everyone has told me it is way easier for a child. Every doctor I've spoken to has said this, so by getting them out now will hopefully help him moving forward and recovery will be easier. Then he will be having further treatment on his lip.
So hard making the decision but two weeks and an operation outweighs the positive parts of the op. I know how you feel though. With my son, this will be his third op this year, and after this he is likely to have 3 more on his top lip. So long road but better than being ill constantly. Wishing you and your child luck.

You can get something called a tonsillotomy, where they dissolve most of the tissue with something like acid, which is a much safer recovery. It leaves a tiny bit of tonsil tissue, which also boosts the immune system.

You could ask if this would suffice to remove the stones? My DS had it done privately at the same time as an adenoidectomy.

My son had tonsils and adenoids out age 4, and it was absolutely fine in terms of recovery. He had dreadful sleep apnoea (they were massive). It may be that they are also affecting your dc’s quality of sleep, so it may improve more than the tonsil stones for them if they have them removed.

I would suggest get an appointment sorted with the consultant. You can discuss the risks and benefits and then make a decision based on what they tell you.

Nobody here has examined your child or knows their medical history well enough to be able to advise you on something this important.

Honestly shocked that your poor son is not getting this on NHS with the problems he has had. For a child it’s much less of a recovery than an adult and if it’s affecting him so adversely maybe you can push for it to be done a ASAP.

Do it! Mine had their tonsils out aged 2 and it was life changing for him.

My daughter had hers out when she was just finishing primary 1. I had her at the doctors every month throughout both years at council for repeat tonsillitis she was constantly off sick, miserable and in so much pain due to this I was told by a doctor at one point they wouldn’t consider taking them out unless she had them 15 times in 1 year which she wasn’t far off. She then went for pre school checks of some sort and it happened to be a ENT consultant I mentioned the constant tonsillitis and my concern for her starting school and continuing to be off so frequently and mentioned the doctor telling me 15 times in 1 year and he told me no 5 times in the one year once he heard she was closer to the 15 times a year he referred her we had a 18 month wait roughly. I was absolutely terrified the whole experience was terrifying the whole 5 year old being put under GA I questioned my decision and can honestly say 2 years down the line it was the best decision I ever made. She is never sick, eats soooooooo much better than she did, no smelly breath, her immune system and her within herself has never been better. Obviously every child is different in terms of circumstances but for my daughter it was without a doubt the best decision.

I gurgle salty water and flouride mouthwash when i have itchy tonsils. My little brother had the tonsillectomy procedure. It doesnt cause problems.

Hi everyone thanks for your reply’s. I spoke to the gp this morning and she’s done a direct referral back to my sons consultant at the children’s hospital. Thank you all x