To have cancelled DC tonsillectomy because of my anxiety.

[TonsilTwister]

Of course I'm being unreasonable. But I'm also terrified.

It's feels like an unnecessary operation, he's not had tonsillitis this winter season so far, but has had swollen glands a few times.

Doctor advised to wait a year to see if he grew out of it. Family are saying to have them whipped out so he doesn't suffer in future.

So as not to drip feed, we've had a lot of loss in the past few years, it's affected me hugely, grief and anxiety with medical settings, and I'm scared to death of losing only DC. I usually manage well, being offered an appointment had set me off on a spiral.

What would you do?

Thank you to everyone who had replied. I appreciate it. I'm going to get in touch with the ENT consultant and have a conversation before we're offered another date. Hopefully that will clear it up either way.

My anxiety is mostly manageable. I work, sleep ok, eat etc generally. Just medical choices which are, for want of a better word, particularly triggering.
Things like jabs etc are fine, doctors appointments in general I can grit my teeth through. It's the fear that something will go wrong and something will happen to him. It sets me off.

I've had mine out, still get tonsilitis although not as bad as previously.

My sister ended up with permanently damaged kidneys after a massive infection caused by untreated tonsillitis. Which would you rather your child had, a relatively straightforward operation or a lifetime of anxiety about if your kidneys would eventually pack up ?

Please get them removed.
I used to suffer with tonsillitis every 2 months from 3 years old until I was pregnant at 21, it was at a time that the nhs were very anti tonsil removal, I still remember the absolute agony and pain. Even now, at nearly 60, when my throat is looked at by anyone medical, they remark on how huge and wonky my tonsils are.
Tonsillitis is so very, very painful.

His tonsillitis has always been treated with antibiotics. The reason he was put on the waiting list/referred to ENT was because he'd had three courses of antibiotics virtually back to back and there was concern he'd end up immune to them. So not quite the same thing as your poor sister perhaps.

I wish I had tonsillectomy as a child. I nearly suffocated once when I was ill, I remember waking up choking and all I could do was kick the wall trying to wake up my mum or sister. It was horrifying, I was maybe 6 or 7. I had the operation finally when I was 19 when I was living on my own and tbh would have been much easier getting that sorted when I was a kid.

Wow, considering OP has said she suffers from anxiety, it is amazing to watch so many people e projecting their resentment and negative experiences at her.

Just because someone else's child had to wait a long time, or because someone was left with recurring tonsilitis their entire childhood, or because somone left a child untreated. It seems her story is none of these things.

OP - sounds like you've made a good, reasonable plan there about talking to ENT again, and I'm sure that they will give you the appropriate advice.

My DD used to have tonsillitis all the time when she was younger, she did grow out of it. I believe removing tonsils makes you more likely to have chest infections, so unless the doctor recommends it, I say give her time to grow out of it first

This actually makes sense, my tonsils outgrew me so had to get rid and a few years later almost died of pneumonia (sepsis type thing, crp near 500)

@TonsilTwister having had a tonsillectomy in my 30’s because my parents refused to let me have one as I child I would say you’re being very selfish. The waiting list is extremely long and that’s after you’ve jumped through the arduous hoops of being eligible... you’ve done the Garda yards, let him have the procedure.

Children recover quickly and don’t remember it as much. It’s widely acknowledged that this procedure is less painful and complicated as a child so you’re potentially increasing his risk later down the line by not allowing it now.

I suffered from tonsillitis badly as a child and was told I’d grow out of it. I did for a few years and then it came back with a vengeance at University. My tonsils ended up being pitted quite badly and then I suffered from
Tonsil stones. It’s a terrible condition to have.

Just let him get them out!

*hard yards

Hey OP! We were on the list too, before the pandemic (DS was 7/8) and as a result of recurrent bouts of tonsillitis annually. Once on the list, did we see a white spot on a tonsil since?

Never!

I called the hospital and got an appt with the consultant in order to discuss the 18months of no tonsillitis, and the consultant said there was no way on Earth he would choose to remove them anymore, and he packed us off with a grin and a wink.

Trust your instincts here: call ENT and explain. ☺️

Yanbu to be anxious, not when you’ve gone through so much, and I’m so so sorry for your losses. They were not your failings though sweetheart, they really were not. Please don’t blame yourself

have another conversation with the ENT and explain, I do think given what you’ve said, that Ds will be better after he’s had the op, it will be easier at 6 than much older. Could DS dad manage this for you both?

I was terrified of hospitals before I had my son, having him helped, but it was still stressful. Then he had an accident and was in hospital for 2 weeks and I was with him the whole time. That sorted me out

this op is for your ds.

So I’ll say it. It’s not about you OP, it’s about your son. You need to deal with your issues so that you can put his well being first. It’s miserable as a kid with rotten tonsils. Sick all the time… Low level infections…picking up every bug because your immune system is worn down… antibiotic resistance… all of it.

If he’s been flagged for getting them out, get them out. Your job as a mother is to make informed rational decisions on his behalf. That is not what you are doing right now you are making the decision based on your fears.

I don’t discount what brought you to this point. But you need to figure it out for his well-being.

I get manky tonsil stones as an adult, and I used to wish that I was from a generation that had childhood tonsillectomy at the drop of a hat, because while stones are annoying, there's no way that getting rid of them would be worth going through the pain and expense and potential complications of adult private tonsillectomy. I thought it would be lovely to just have a nice non-manky throat thanks to some brief, barely-remembered childhood discomfort.

Then I read the big 2018 Danish study on childhood tonsillectomy and adenoidectomy, and longer-term adult health. Although it had limitations like being one of the first studies to look at this area, and the ages of the people being studied topping out in their thirties, and several more, it had some really concerning-looking numbers for increased disease risk after tonsillectomy etc., like doubling and tripling of rates of things like asthma and pneumonia and COPD. Who knows how it'll all shake out when more research is done, especially following people further into life, but that study affected how I think about the whole thing, and about how much we really know about all the potential downsides of removing them.

Obviously if kids need it doing it should be done, and I know it can be life-changing and prevent a lot of suffering, but I'm not so envious now of people who had theirs whipped out as little kids for minor reasons, and I think it's totally reasonable to be wary of getting it done if it doesn't seem necessary any more.

You were advised to wait a year, so nothing wrong with that.

As long as your child is not picking up on your anxiety, it’s all good.

The NHS website says only have it
www.nhs.uk/conditions/tonsillitis/
Its say
Surgery to remove your tonsils
It's very rare that someone needs to have their tonsils taken out.
This is usually only the case if you have severe tonsillitis that keeps coming back.

Your doctor said to see if he grows out of it and it seems he has grown out of it?

I forgot to say, on the anxiety front, maladaptive anxiety, anxiety disorders, and overanxiousness in general can be exhausting and life-ruining and gruelling and terrifying and agonising and turn your world into a tiny, restricted, tedious little place, and can be just generally awful. Ask me how I know…

But that's at least in part a dysfunctional misfiring of a system which is exquisitely adapted to serve the most important of purposes — to keep us and our families alive and safe and well. It's supposed to kick in when you perceive or predict that something might pose a risk to you or your child. The ruminating is the result of your brain making sure it's checked every angle, and the on edge feeling is because you're aware there may be a "threat" of sorts and are diverting resources to being ready for it.

The medical advice you've been given would suggest that your child might not get as much benefit from the surgery as he would if he were still getting bad tonsils regularly, and you'll have been told that there are risks (however small) involved in surgery, and this is exactly the kind of situation where your brain wants to give you the tools to get through what it sees as a potentially risky situation in whatever way leads to the best outcome for him.

If you have an existing overactive anxiety tendency or if the situation has aspects that are related to terrible past losses, there's a possibility the anxiety response is going to kick in too hard and become dysfunctional and disordered, which is a problem, but some concern and desire to think through all the possible info in a situation like this is perfectly natural IMO, and a sign something's right with you, rather than wrong with you.

Does he snore? Does he mouth breathe? Is he tired in the day? Along with the infections?

I can only tell you our experience - our GP encouraged us to get it done. For a number of reasons - mouth breathing affects dentition, which can affect jaw development and facial attractiveness as they get older.

Snoring and sleep apnea mean they don't get enough rest, which affects learning, concentration and behaviour at school and at home.

Repeated doses of antibiotics as a child stuffs up your gut bacteria and can lead to a long list of health problems in the future.

My DH had to have the op as an adult, which is more dangerous.

I was very anxious but we went ahead and it was great. Not much pain, child was pretty much her normal self straight afterwards.

The surgeon said it was a difficult operation because there was a lot of scarring already from repeated infections , and if we had left it longer there would have been even more scarring. So I was very happy with our decision and have noticed positive benefits in DC.

Follow medical advice.

Try to get to grips with the anxiety you feel. It will affect your child.

I wonder if you have considered medication for your anxiety. It makes it very difficult to make these sorts of decisions.

You need to let the operation go ahead.

Your child is at the top of the list. 'Only a couple of infections' is still note than most children suffer. Dont downplay this. He wasn't put on the list lightly.

Please don't make your child go back to the end of the list again. Tonsil problems are completely curable and they make children miserable and affect sleep if they're recurring.

Get help for your anxiety or just gut this one out.

I'm really sorry @TonsilTwister I feel very bad about telling you this, as it could influence you, if only a little bit, and my commonsense tells me to not pass my - probably ‐ very silly fears on to someone else, but here goes (of course you can decide to just not read this, which would - probably again - be the most sensible thing to do):

Many years ago, my now adult, heathy, son, suffered from recurring tonsillitis, he would have been about 9 or 10 years old at the time. So after a referral to a paediatric surgeon, he was put on the waiting list to have his tonsils out. Of course, quite normally I am sure, I was very concerned about him having an operation, especially as it was not an absolutely necessary operation for him to have, but I initially agreed to it.

Then suddenly I started reading articles about operations where the anaesthetic either hadn't worked, or the patient had died suddenly on the operating table because a particular anaesthetic had had a bad side effect - this was in the time before home computers were a thing, and way before mobile phones and the internet - so I hadn't gone searching for anything to do with any medical issues, I just read my normal newspaper, and normal magazines, and those articles were there. I then had an absolutely awful nightmare, where my son died under the anaesthetic during his tonsillectomy.

Now the most likely reason for my nightmare was that I had already been really worried about the operation, and then I read those articles, so it would probably have been surprising if it hadn't given me any nightmares. Anyway, that was the last straw for me (and the poor camel), so I cancelled the operation, and explained to my son's GP why.

About a week later, I got a letter from the Consultant Surgeon, he told me that it was a very straightforward operation, and that he had never lost a patient yet, and that it would be much better for my son to have the operation. But I felt so certain that he should not have that operation that I never changed my mind about it.

My son never had another bout of tonsillitis.

He did, however have to have his appendix out a few years later, and the only thing I was worried about then, was the possibility of his appendix bursting, and killing him before he could have the emergency operation! He had the operation, it went very well, and he recovered from it quickly.

So the only thing that I can advice you about OP, - and as I said before, it might be bad advice - is that you try to tune into your own gut, into your own instinct. In the meantime, I wish you so much luck - and the Guidance of a Brilliant Guardian Angel - in making the right decision for your son. xxx

I presumed that you'd actually cancelled a planned operation. But looks like the Dr has said wait a year. So he's not actually been listed for surgery. In that case, if the doctor said wait, then wait. Unless it's actually for sleep apnoea. Then I wouldn't wait.

They use a gag to hold your mouth open. Our cleft palate babies can get terrible sores at the corners of their mouths post op.