To have my childs tonsils and adenoids removed?

[boong121]

Hello all, my child just about to turn 3 and has been seen by an ENT- she is on the ASD pathway,non verbal, has super bad sleep with sleep apnoea, she breathes very heavily during the day I hear her from another room, she cant run more than 5metres she gets out of breath very quickly, struggles with breathing on hot days etc.

But getting them removed is such a major decision, if there is anyone with an experience or knows anyone who has had them removed as a child were they happy with that choice or did they regret it?

My son had adenoids out and grommets in around 4 months ago. Best decision I ever made! I was a nervous anxious wreck but the difference in is quality of life is night and day. He's like a different child and thriving!

My son has sleep apnea and has been waiting tonsil removal for 5 years on nhs.
I wouldn't hesitate getting them removed. Sleep apnea impacts him so badly - hyperactive and overtired constantly

Watching thread with interest as we're also trying to decide whether to get my 4yo's tonsils removed. He has minor sleep apnoea/awful snoring and is generally quite nasal, but it doesn't seem to bother him. He's booked in for a sleep study in a few months to measure level of oxygen making it to his brain during the night. If it's not affected we'll probably leave it, if it is we'll get it done.

I had my tonsils out at 14 (no idea about adenoids). They took them out because I was off school such a lot with repeated tonsillitis that my attendance was only a bit over 60%.

The op itself was fine, I don't recall it being particularly painful or anything and it was a relief not to be ill such a lot of the time.

I was in hospital for a few days, but I daresay they don't keep you in as long these days as they did in 1969!

If the NHS is prepared to do it, that means your DC needs it done.

It's horrible having a childhood of tonsillitis, early adulthood of tonsillitis, twenties of tonsillitis with the odd quinsy thrown in for good measure, not being able to breathe, eat, speak or sleep properly throughout the year, never mind in winter - and then have to go through a far harder operation due to infection spreading into your tissues and have to function as a parent post operatively in your thirties. And your DC has a far harder time than that to already have episodes of mini suffocating/choking throughout the night and not being able to play.

DS2 was 2 1/2 when he had tonsils out, adenoids trimmed and grommets put in both ears. He was like your DS, I knew he had rolled over in his bed because his breathing would change, and I was downstairs!

He was like a changed child overnight and the recovery was so, so fast. On the ward they did the operations in age order from youngest and he was second. Originally he was due to stay overnight (his and my bags were packed and with us) but the recovery was so good he went home 5ish.

The only child with a painful recovery was a teenager.

I myself had my tonsils out in my early 20s. It was hell in earth. If they need them out, better to have them out early.

My daughter had a tonsillectomy 4 weeks ago as she constantly had almost tonsillitis. She is 6 years old. I was very worried about managing her pain afterwards but she was mostly fine. We just kept up with the pain relief as advised by the hospital. Already we see a massive difference in her sleep and appetite so no regrets.

My DS had the whole works at 4 grommets, adenoids and tonsils.
The school have commented he is a different child. He was sleeping so badly and constantly a wreck as so tired.
not going to lie him waking up from surgery and the first night I thought, what have I done.
He was absolutely fine after a couple of days and he doesn’t even remember he had it done.

It was reading about this ADHD - sleep apnoea link that blueey mentions that helped me make the decision to go ahead with the surgery for my son who is suspected ND when he was 3. We’d had massive sleep problems since he was born but things did improve noticeably with his sleep after the operation (and a bit with his restricted eating) once his hypertrophic tonsils were removed. The better sleep also seemed to help with his daytime behaviour (though how much it was to do with sleep v just getting older and hitting new developmental milestones is hard to tell)

Obviously a tonsillectomy can’t change a kids neurotype - but reducing breathing/swallowing troubles and having better quality sleep seemed to have a noticeable effect on how relaxed he was. Probably because he wasn’t starting the day already tired and uncomfortable - it’s no wonder really when you think about it that everything seemed more overwhelming to him when basic stuff like eating/breathing and sleeping was hard!

I would recommend if you do go for it seeing if the hospital has a play therapist - we had a brilliant one come round the ward beforehand with a spare anaesthetic mask that she talked to him about he could play with/put on a dolly/on his toy animals/eventually try on himself before we went down. This meant it wasn’t so frightening when they took him down to theatre and had to breathe the gas in.

Also it’s a long day in hospital with a lot of waiting around in bed before surgery - so brainstorm all the toys that they enjoy that you can play with on a hospital bed-table to keep them busy and calm… we played a lot of duplo, playdoh and had a new dinosaur sticker book…also if they are getting restless ask the nurses if it’s ok to go for a wander between sets of observations and whether there’s a playroom etc you can use.

My daughter (now 6, was 5.5) had her tonsils and adenoids removed earlier this year via coblation. It was straightforward, non-traumatic (for her! I blubbed when they put her under!), and she hardly suffered with the pain. She used to get recurrent tonsillitis and snored loudly, but both problems disappeared instantly. She had one week off school, and was itching to get back by day 4.

We were In the hugely fortunate position of having private health insurance that covered it in its entirety, and would recommend our surgeon a thousand times over for his care, attention and compassion, not to mention his incredible skills.

In your shoes, I would get it done in a heartbeat while she’s still young. I had both mine out at seven years old and all I remember of it is having to count backwards after the anaesthesia went in, having to eat toast to prove I was well enough to go home and absolutely loving having my Mum all to myself in the time I was off school recovering! So no recollection of pain or trauma at all. My daughter just laughs about how she used to have ‘meatballs’ in her throat and treasures the cuddly bear they gave her at discharge; she has never said anything negative about it.

I had tonsils & adenoids out aged 6 due to recurrent infection. That was in the 80s when it was a very common operation. I had no negative side effects and I've been very healthy for the last 40years. Interestingly, my mum says that before the operation I had a really deep voice that was often commented upon because I was a petite girl with blonde bunches and the voice of an adult man (or so she says!!! Bit of exaggeration probably) after the op I had the normal voice of a 6yr old child.

OP my DS had his adenoids out when he had grommets fitted (consultant said no point in grommets without also removing adenoids) but it was delayed until he was 5 (DS, not the consultant 😁) due to risk of excessive bleeding from adenoids surgery at a younger age. Consultant was also a father with simular aged child, who we happened to know in passing through school, and when he said he would delay until 5+ for his own child, and we had no reason to distrust his advice.

But that was 20 years ago, so maybe the advice has changed for under 5s? Ultimately it's worth doing, so take the best up to date Info and go from there, OP

My son had his out at 4 due to the same problems, he's also autistic & was non-verbal at the time. He'd also had several hearing tests showing reduced hearing.
It was the best thing we did, it resolved a lot of issues & his hearing & speech began improving a few months later. It also reduced stress for us as we we're able to relax at night & actually sleep, & it allowed us to focus on his other needs more.

Had DD’s adenoids out at 3 after persistent ear and sinus infections and snoring. Coming around after surgery was awful, she was hysterical but she recovered quickly and has been in good health, bags under eyes gone, no more infections or water on her ears,don’t regret it for a second.

My DC had her tonsils and adenoids out just before she was 2. She had sleep apnea and was constantly ill in hospital. She was very underweight and looked ill all of the time. It was more risky becuase she was so small but we weighed up the risks and it was absolutely life changing for her. The difference within days was obvious and she grew loads in height over the ext few months.

Surely you take the advice of the ENT medics?

if they think her problems are related and she will benefit, they will recommend removal.

listen to them as they will make sure you have all the info on the risks to make an informed decision, but generally I would do it if advised to.

it’s not something you should be deciding without medical input, or based on mumsnet opinion.

fwiw I had mine out as a child, my parents were told I needed it doing, and urgently. So not really a choice for them.

Do it! My friend’s DD suffered for years because the nhs were too stingy to pay for a tonsillectomy. Since the operation her quality of life is infinitely better.

My nephew has just had this done. It's made a huge difference to him. Silent sleeping now, better quality sleep, increased appetite.

My son had his adenoids and tonsils out six weeks prior to a major spinal operation (OSA was caused by low muscle tone really but they did everything they could to relieve it). We haven't thought about it since it happened, it's no biggie.

If she's got severe sleep apnoea, they will have to come out.

I don’t know why you wouldn’t. Most places do them as day cases now, even for sleep apnoea in some cases.

It made a huge difference to my DC’s sleep. Not only that but it stops them being tired in the day which then has a knock on effect at school. If they’ve offered it, take it.

Just stock up on calpol and nurofen beforehand.

I'm late 50's and had both tonsils and adenoids out when I was about 5, which was routine back then. Don't remember it and absolutely no repercussions.

One of my DD's suffers terribly from tonsillitis and Dr refuses to refer her for surgery which I struggle to understand

I WISH I’d had mine out as a kid but my GP surgery refused to refer me despite recurrent tonsillitis almost every month from age 3-18; I had so many antibiotics that my gut health is probably forever ruined as a result. I finally had my tonsils out at 18 when we moved and switched GPs and I sat sobbing in the new GP’s room with black blisters on my tonsils. The recovery was absolutely horrific as an adult, as I had such bulky tonsils with extensive scar tissue from hundreds of previous infections. Barely had a sore throat in the past 12 years!

DS had both out and grommets fitted 4 months ago, due to sleep apnea, he was 4, we went via Spire as NHS list was 18months and we wanted it done before he started reception, recovery wasn't too bad and the difference is amazing, sleeps so much better, no longer as tired, increased appetite. Pre-School commented how much more engaged he was after returning its worth it if DC suffering as is, I've heard from those that had it done at an older age the recovery was a bit rougher

My child had them removed 6 months ago. He was 3 at the time. He had severe sleep apnoea where he would stop breathing up to 150 times a night. He snored so loud he sounded like darf Vader and when he spoke it was very nasally with him not being able to pronounce certain words.

Since having them out he is a completely different child. He sleeps so much better, no snoring at all and will sleep throughout the night. He no longer takes hours to settle to sleep because he's not scared of waking up choking anymore. His speech has improved so much, he talks all the time now and is more confident when talking. At nursery the staff say he is a lot happier and confident now.

He recovered very quickly from the surgery and only needed to spend one night in hospital after it.