Tonsils and adenoids - Feedback

[Wavesand26]

Hello all
I used Mumsnet a lot when I was researching the benefits of having my son's tonsils and adenoids removed and since he had his operation a couple of months ago now I thought it might be helpful to come back and write about our experience in case it helps others.

Our son is nearly three and we went to our initial consultation with the ENT consultant due to noticing that our son would pause breathing when sleeping (diagnosed in the consultation as obstructive sleep apnoea). He had also snored since being a tiny baby which we'd always found endearing until we found out that it really isn't healthy for a child to be snoring to such an extent. I will list the other general concerns we had about our son:

• recurrent tonsillitis, colds, sore throats. It started to seem like antibiotics weren't having an effect anymore. Everyone would tell us "oh it's normal to pick up constant bugs at nursery", but this was literally non stop, it felt like he was never free from a cold.
• constant runny nose - never had a break from it
• always tired, low energy, grumbly
• pale complexion and tired looking
• delayed speech and nasal sounding speech
• Poor behaviour; hitting, scratching

During our first appointment with the ENT consultant and surgeon we were advised to have our son's adenoids and tonsils removed and were told that there would be no benefit to waiting and seeing if things just improved for him naturally. We were nervous but we went ahead and booked him in for his surgery two months later.
At this point I should mention that we did have to go down the private route. The NHS route would have taken months/years and it might still not have been approved anyway due to their strict criteria. For anyone who is interested to know, the whole procedure cost us £3500 and they offer payment plans. We know that we are extremely fortunate to be able to go this route, but I would strongly advise anyone to look into it if they are concerned about their child because the payment plans are really flexible and, honestly, this decision has been LIFE CHANGING for our son.

We had read from other parents' experience that their child was totally different (for the better) post surgery. We hoped that this would be the case for our son and that he'd feel noticeably better but we didn't want to get our hopes up. But wow, the difference is incredible. This is why I have written this post.

I'll list the things we have noticed in our son:

• No longer snores AT ALL
• Has no runny nose at all
• Has tons more energy
• Is generally much happier and the low-level grumbling has just completely stopped, presumably because he feels better in himself!
• His speech has exploded!!! His pronunciation has drastically improved and he is picking up new words and phrases all the time
• Behaviour has improved. He is no longer lashing out all the time, he still does it occasionally but much less

Sorry for the long post, but having seen what an amazing difference this operation has made to my son's life, I feel so passionately about making other people aware who might not realise how much of an impact these horrible tonsils and enlarged adenoids can have on our children. I am so relieved and grateful that we went through with it, because he is 100% a happier child because of it, and it makes me feel so sad to think about how uncomfortable he must have been before he had it done.

I am more than happy to answer any questions here or privately.

Thank you for reading.

Thank you!
my DD is having her tonsils out in a few weeks after jumping onto urgent list after a spell in a&e a
month ago. she’s had recurrent tonsillitis for the last 12
months, I feel I’ve spent a year battling the gp to do something other than prescribe Penicillin as she’s missed
so much school, we’ve not been able
to get away as each time we’ve booked something she’s been poorly and we’ve had to cancel, etc. but now
i know they’re being taken out I’m freaking out which is silly I know.
i think a lot
of my worry stems from knowing a family friend who went in for a routine tonsillectomy and didn’t wake up from the anaesthesia ☹️☹️☹️Obviously very rare and hospital were found at fault but I’m having horrible dreams about it ☹️
i know it needs to happen as the poor kid is Poorly monthly with a cold
or sore throat or strep but I’m just….scared ☹️
any tips
would be so so welcome.
one specific question: I am out of annual leave for the year apart from 2 days I will take
on the day of the surgery and day after. Dr said she may get one as a day case
but prepare for staying overnight. Is it plausible I can work from home for her recovery 1-2 weeks as she’ll be lying low or is that very naive and it will be round the clock care? In Which case do you have any experience in asking for carer leave
from work? I’m a
single mum and very much on my
own so no one to step in to help care for
her, thank you and I’m so glad
to hear how positive it’s been for you ⭐️

I'm really sorry to hear about your family member. That is a tragic thing to happen and like you said extremely rare. It is understandable to be nervous about the anaesthetic but what made me feel better is to remember that anaesthetists do this day in day out and are incredibly highly trained in what they do. They have one of the most important jobs of anybody in the medical profession. I've dealt with three anaesthetists over the last few years and each one of them has been incredibly reassuring and professional and I trusted them all completely.

You've got to focus on the bigger picture, your DD is miserable and unwell every month; that is no quality of life! What you're doing for her is giving her the chance to feel better and be happy. And I promise, from what I've experience with my son it will be life changing for her.

On the day of the op your daughter will have to fast a few hours before the op. My son couldn't eat after 7:30am and his op was at 230. This was the part I dreaded the most because he loves his food. So I got us both up early, went to Macdonalds that opens at 6:30 and we ordered and ate everything possible on the breakfast menu until he had to stop at 730. He did so well and didn't complain for food right up until going into theatre.

Once my son had been taken into theatre my husband and I went for a walk and a cup of tea and after half an hour he was out of the operation. The first hour after the operation it was tough because the anaesthetic made him go a bit doolally (they all do apparently). But then just like a sudden lightbulb switching on, he was all of a sudden his normal happy self and he was wolfing macaroni cheese and pizza just 90 minutes after the operation!! We left the hospital at 7pm that night.

Recovery wise he just wanted to watch TV but he wasn't upset or anything. He was eating pretty normally as long as we kept up his pain medication. I think it would have been plausible to work from home but it depends what you do - if you can take breaks from work to get her food and drinks and give her pain meds then you should be fine. Just remember you will be up once or twice in the night to give pain meds as you don't want to let it get out of her system (it was just paracetemol and ibuprofen). The only other thing too is that after the first week my son was climbing the walls so we ventured out to outdoor places for the second half of his 'quarantine' (he had to stay away from people for two weeks to avoid catching any viruses).
If you need to request leave from work I'm afraid I can't help there as I'm self employed. But maybe the GP could help with that? I'm not sure.

I hope my reply has helped!

Thank you so so much, this is beyond helpful and reassuring.
really appreciate the heads up about her being a bit odd after anaesthesia- I had a scare with her last year when she was very poorly with a bad infection and while we were in a&e being assessed she suddenly became confused and couldn’t remember names or her school and it was utterly terrifying. she recovered but it’s left me bruised As it reminded me of my mum when she had a stroke and got her words muddled up and forgot the right terms for things ☹️So had you not warned me it’s normal I think I’d have lost my Cool completely if she woke up seeming odd. thank you so so much xx

OP, I agree 1000%! My DS 3 1/2 just had his adenoids out and grommets put in due to constant repeat double ear infections, hearing loss, major speech delay, weight loss from being constantly unwell, snoring, and sleep apnea.
The change in him is just amazing! He's gained over 1kg in weight post surgery already from eating so much food as he can finally taste it, smell it and is trying new foods, no more snoring or sleep apnea, his full hearing has returned and he's picking up new words everyday. He's full of energy and not tired anymore. Also lashing out a lot less as he can hear things properly and communicate. His complexion is so much more healthy. Before he was pale and dark circles round his eyes but he looks healthy and filled out now.

Honestly anyone thinking of helping your child please persevere with it. It was a long 18 month slog and we ended up having to go private in the end as the NHS just kept saying none of his issues were ENT related. 🤦‍♀️ The private consultant told me his ears were awful and full of fluid and his adenoids were massive and needed to come out ASAP.

The relief its done and I've got my little boy back is the best. My best advice is don't let anyone fob you off and keep asking and question everything to get your kids the help they need.

@Wavesand26 @abbs1 brilliant to read these updates! My 3 year old is for this surgery in a couple of weeks. Hoping it solves A LOT of problems 🙏

Sorry I haven't replied to the thread in a while!
I'm so pleased that my post helped. @Tangofantastic @abbs1 how are your children doing now?
My son's speech is continuing to improve. He may need a little speech therapy to iron out some of his pronunciation issues but that's ok.

@Starlight19 I hope it solves the problems for you, I'm sure it will! What issues is your child having if you don't mind me asking?
xx

@Wavesand26

Severe sleep apnea, frequent sickness, LOTS of mucus every morning she is caked in it. She has a little but of developmental delay and has difficulty with her speech. She is also very small due to having a poor appetite.

Hello! Happy to report so well! Op went well, she had to go back in for an infection after it with a bleed which was scary but they had it under control within 3 days and we’ve not looked back. She’s put on weight and sleeps better and her constant low grade fever has gone! Thank you for checking back in 💞☀️💞

Oh this is fantastic news! Weight gain would be a good start for us! Had you any issues with speech?

Joining the chorus of people with a DC that really benefitted from this surgery! Luckily we managed to get it on the NHS, but seeing how much better DS1 is now I would have worked out how to pay for it privately. I always thought he was pretty lazy, and the biggest difference post surgery has been to his energy levels.

My daughter always wants to be carried upstairs to bed, we joked because she was lazy but she could be physically so tired.

Your ds sounds like mine and he's due to have adenoids removed in 2 weeks. What was the recovery like for him?

Hi all, I hope you don't mind me jumping on.

My son is 3 and on his third bout of tonsillitis this year . We recently saw a different dr at an emergency appointment and she told us that he has huge tonsils and adenoids and this is the first time anyone's told us this.

I was wondering how you all went from recurring tonsillitis to getting it looked into more seriously?

My son's snores and has done since he was tiny. He's often got a snotty nose and I've noticed more recently a pale complexion and he has huge food aversions.

It's so hard to get a GP appointment but I would like to push for his tonsils to be looked into .

Any advice would be so welcome

Thanks

Does he have sleep apnea?

Push for a sleep study! That’s what got us the surgery

Thank you for this, it’s very helpful.
My 5 year old has just got her date for tonsils, adenoids and grommets only 10 weeks after the consultant appointment… we were told at least 9 months so I’m totally unprepared!
I recognise the pale complexion and dark circles, she never lacks in energy though so I’m hoping the operation will calm her down and make her less hyper. We’ve had hearing aids for the last 15 months which has made a massive difference to all of us. She was like a different child after 2 weeks in terms of speech and understanding, so I’m hoping for the same again this time.
we have severe glue ear with moderate hearing loss then grade 4 tonsils and sleep apnea.
can I ask if it’s usually day surgery or do they sometimes keep you overnight for some reason?

@AlwaysConfused198 I went through the health visitor as I was worried about her hearing. Had an appointment with audiology within 3 weeks and then they referred me to ENT. She did have moderate hearing loss due to glue ear though and she sounds like darth Vader on a good day! We’ve just got a date for her triple op and the total time was 16 months from referrals. We were originally told 3 years

Thank you all! I will push for a sleep study I'm going to give me Dr a call today and see if I can discuss with them.

My DD had hers out at 10, due to sleep issues officially but she also frequently suffered throat infections. Did result in improved sleep, not waking up all the time but she still gets sore throats all the time but not as severe.

I had seen the GP because I was worried about asthma (coughing a lot at night, low energy). I was told he didn't have asthma but he had very large tonsils. GP advised against the surgery because they grow out of it but said I could get put on a waiting list (12 months at the time) so see a consultant. I actually posted about it on MN at the time! We were put on the waiting list since there seemed to be no downside, but after chasing it was probably 16 months before we were seen. The consultant was the one that had pioneered the procedure in the UK and as soon as he heard that DS1 snored really badly and his breathing hitched in his sleep he said we should get the surgery, we didn't need a sleep study. Then it was really quick because of a cancellation, a few weeks later. It's definitely the sleep they care about, my main concern was how long DS1 held on to a cough, but the consultant said that the surgery would help with that but it was just a nice side effect rather than a reason to have surgery.

The surgery was quick. It was a bit freaky seeing DS1 come out from under the anesthetic, he was wild and lashing out, although we were warned that was normal and he wouldn't remember it. We were in hospital a few hours after the surgery, initially DS1 just wanted to be held, but by the end he was building a Lego kit we'd brought him. We kept it low key for a few days after but honestly he seemed pretty immediately fine. We kept him dosed up with pain killers as recommended.

My son had snored since birth, I had no idea this was such a bad thing until we saw the consultant. Looking back on photos he always had his mouth open during the day, presumably because he couldn’t breathe through his nose properly!
We went private as the GP made it clear that he would have to have several more episodes of tonsillitis before they’d consider him for surgery - he’d already had tonsillitis so many times and we weren’t prepared to keep letting him go through it!
We took him to spire and the consultant decided within less than 2 minutes of seeing him that he needed to have his adenoids and tonsils removed. He checked his chest for a little indent which occurs when they’re not breathing as they should. He had the indent which was enough evidence in itself that he needed the op.

From our first and only appointment with the consultant at spire my sons surgery date was 6 weeks later.

Best decision we’ve ever made.

As I’ve mentioned before there are payment plans available so please don’t presume you can’t afford to go private! Also I have a lot of trust in GPs and the NHS but with regards to tonsils and adenoids issues there’s a real issue. I’m not sure if it’s funding or what. But our son would have been suffering so much still had we not gone private and got them out. We asked the surgeon if there was any benefit to waiting it out to see if they got better themselves and he said absolutely not.

Apparently the type of surgery they do now is quite new (I think within the last six years or so?) and there's fewer consequences/ side effects so more reason to get it done. They don't recommend staying off from school or nursery for example. I do wonder if some GPs haven't realised there's been a change in approach and that's why they're hesitant? My mum is a retired GP and was against DS1 getting it done, although now completely agrees it was the right decision.

My DD was off school for two weeks after hers, the first week she was in so much pain she definitely would not have handled school, the second week she probably could have gone back but the surgeon said not to so she did distance learning (as it was covid times)

Was that tonsils too or just adenoids?

It was both. The surgeon said they showed signs of chronic infection, poor girl. So the two weeks off school was still probably less than the amount she usually missed due to all the infections.

Hi all. I appreciate this wasn't my post originally but you all gave me great advice. We saw the ENT consultant today and he said he recommends removal of both tonsils and adenoids. I'm now feeling so nervous but he thinks we will see huge improvement .

He has a space in two weeks so I am just going to get approval from insurance and I think we will book in.

Just seems terrifying that my 3.5 year old will be having surgery