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Experiences please of tonsillectomy in young children...should we go for it?(56 Posts)
DS 4 has suffered for the past 2 winters with reccuring tonsilitis. When he isn't having an attack his tonsils are very enlarged and he snores terribly.
Last spring we were referred to ENT, we saw the consultant in May who basically took one look and told us he can go on the waiting list immediately. We asked him the probability of DS growing out of it and he said 50/50. We asked to be deferred until after the summer to see how he was. He had one mild attack over the summer but was generally quite well even though they remained enlarged. We saw the consultant again in October and when we asked if we could again defer and see how the winter went he discharged us but told us to be re-referred at any time and he would 'have them out'.
Anyway, DS has just had another terrible attack and as always happens his eating becomes awful for several weeks after, watching him chew and swallow is, for want of another word, painful!!! He has lost weight. We see this pattern after every bout. The snoring is just as bad, if not worse. We are seeing the gp next week to discuss a re-referral but if we do see ENT again we cant waste their time and will be put on the waiting list. We have had so much conflicting advice; some saying its the best thing they did for their children, others saying we should hold tight and wait and I'm worried about putting him through an operation/under anaesthetic/recovery unless its absolutely necessary, equally I dont want these bouts that floor him to affect his schooling when he starts rec next year. Any advice/experiences appreciated.Thankyou
I had mine put when I was 4. Sorry can't really provide more useful advice. But the icecream and jelly was good!
It is a very simple and straight forward operation - if you did it they may also remove the adenoids which also may be enlarged if tonsils are - enlarged adenoids will also be cause of snoring .
If he does have OP then be aware that the post op advice is to be off school / pre school for 2 weeks - so that they can fully recover.
I would seriously consider getting it sorted before he goes to school . Your GP may , if asked nicely, refer you privately to initially see the ENT consultant - then when you see him ask to go on his NHS list.
We did this with our DS as he was diagonised with glue ear 5 months before he was due to start school . He has since had two lots of grommets and on the second occasion they whipped his adenoids out - he also has enlarged tonsils but they have never given him a problem so they remain in.
Tricky one but two experiences for you.
My just 4 yo had his tonsils and adenoids out a few months ago. He was referred due to severe snoring and sleep apnoea. We only had to wait 6 weeks. The results have been great. No more snoring or associated sleep apnoea (thank god!), he eats much better (apparently DC with enlarged tonsils often do not have a good appetite) and has grown loads due to more food and better quality sleep. He was small for his age - 9th centile - in both height and weight but is now 50th centile for both. Oh, and his voice became a lot higher and squeakier .
I wish we'd had it done sooner to be honest. I spent a long time convincing myself and my DH that tonsillectomies are no longer carried out routinely on young DC and that, chances were, he'd outgrow the problem. But the GP referred us with no arguments and we'd only been in the Consultant's office 2 mins before he said that that was his recommended course of action.
I compare my DS's experience with mine almost 30 years ago when, as an 8 yo, I had the same operation plus grommets. Like your DS, my problems were caused by repeated tonsillitis (and ear infections). I had several bouts a year for 5 years, and still remember the pain. It presumably also affected my school attendance. I should have had the operation done earlier but my name was "lost" from the waiting list. The extra years of illness I suffered as a result still upsets my DM even now.
My DS's recovery was fine really. He had to stay overnight, which wasn't much fun (I stayed with him) - he was in pain and couldn't sleep - and then had to spend the next 2 weeks at home. He had bouts of pain that made him cry for the first few days but calpol and nurofen sorted it out and he was soon eating normally and chafing about not being able to go out. I felt sorry for him but was really glad he'd had the op before he started school.
Thanks so much, particularly Sariska, it's good to hear 'real' experiences. Ds has never been a great eater but there is a definite correlation with whats going on tonsil wise and how he is eating. Plus his voice sounds quite nasally. Also despite sleeping 12 hours he often looks very tired and we have often wondered if that is because his sleep quality is poor due to the ridiculous snoring! Anyway, food for thought. Thanks for taking the time to post.
My experience was very similar to Sariska. DS was 2.5 yrs old when he had the op and almost immediate improvement in his growth/appetite. He had snoring/sleep apnoea/no appetite (but no infection/tonsillitis). Operation was done very quickly and it was such a huge relief and improved things massively.
My 12 yo ds had his out when he was 5 as he had tonsillitis every 4 weeks and it was affecting every aspect of his life (and ours). We haven't looked back and he has barely had a day Ill since. It's a simple op.
I have just managed to get my dd (5) referred to ENT with a view to getting her tonsils out. She had recurrent throat infections/tonsillitis, has lost weight, to be honest is a shadow of the child she was maybe 18 months ago. She has had blood tests etc to rule out anything else. Her voice is hoarse, she is tired, grumpy. We are now slipping into a routine where every few weeks is a GP appt, I think her throat is constantly sore and she's just got used to it
She started P1 in September and I'm not going to let this run on into another school year. I know its only anacedotal but I've been speaking to a few parents waiting at school gates whose children have had it done and all their experiences have been positive.
Please do it now- your child has to all intents and purposes a chronic illness. Don't wait till he is older when it will be harder to recover (I had mine out as an adult and it was terrible)
My uncle died at aged 8 from a tonsillectomy operation. Maybe he was the 1/1000 but having had chronic tonsilitus as a young child and seen my own DD seriously ill with it, I personally would need a lot of convincing to have the operation.
My 4 year old DD had her tonsils removed a couple of months ago as she suffered for 18m with severe sleep apnoea due to enlarged tonsils. She also had enlarged adenoids and glue ear so had grommets in and her adenoids taken out at the same time. When i was first told that her tonsils were enlarged i had no idea as there was no indication that this was the case and the Dr said that they may well shrink but actually they got worse. She also used to eat very slowly! The op for her went very well and she was like a different child immediately and during her recovery period she never once complained. I actually wonder now whether her tonsils were always sore but she never said anything because she didn't know anything different so that's why she didn't complain post operatively - poor love. Her voice also went squeakier, it's really cute .
Of course, it is always worth remembering that all surgery carries risks but there are also huge benefits and from the sounds of it, your DS's quality of life is suffering from his recurrent bouts of tonsillitis and an op would really help him. Don't also forget that tonsillectomies are routine operations and your surgeon will, most likely, be very experienced in them and would not recommend something like this if he/she didn't think it necessary. SimLondon, while i'm extremely sorry to read what happened to your uncle, i don't really think your post has added anything to the discussion other than potentially terrifying the OP.
I suffered as a child and ended up having the out aged 26 after specialist said I could carry on getting tonsillitis into mid40s.
Recovery for me was 3 weeks. Child of colleague had them out same time and virtually up & running next day.
Definitely have them out while young if recommended.
My son had sleep apnoea due to enlarged tonsils and had his tonsils & adenoids out aged 5.
I couldn't decide whether to go ahead due to worries about the op and risk of bleeding. I also knew someone whose DD nearly died following post tonsillectomy complications but in the end decided the risks were low.
It has transformed my son - as above, he is no longer tired all the time, is able to eat better and has grown loads. I'm glad he had it done and wish I had taken him for investigations earlier.
Following the op he recovered really quickly and didn't really complain of pain at all. Was eating pasta etc the next day. He was upset at first because when he ate or drank some fluids kept coming down his nose but it cleared up. It's just reminded me that he was also really confused - everyone had told him he would get medicine to put him to sleep during the op so he thought it was overnight and couldn't understand being awake again during the day!
I had mine out aged 20 after years of suffering 'low grade' tonsillitis - transpired that they were totally rotten underneath. Anyhow, there was a 4/5 year old in the room next to me who also had them out and he was skipping about the place the next day while I was in severe pain.
Children recover very quickly from the op. And for me the repeated bouts of tonsillitis weren't something that went away as I grew up, it progressed into them being accompanied by bronchitis. Once I had them out I was hardly ever sick - made a huge difference!
Another supporter here! My DS sounded exactly like yours - recurrent tonsilitis, snoring loudly, visibly huge tonsils, generally tired, whingy and run down a lot. He had his tonsils and adenoids removed when he was just turned 4 and it transformed him - all problems gone! He recovered really well, had minimal pain after the first few hours and has never looked back.
Letting your child have an operation is scary and obviously there are always risks but it seems from the experiences above that the end result is worth the tiny risk.
Hope everything goes well for you!
And another supporter here! I've posted about this before. DS2 was 4 when he had his removed, he's 10 now and I don't regret it at all
His recovery was so speedy and his improvement in eating so immediate. He had never had tonsillitis, but they were removed as they were ginormous, the biggest the ENT had ever seen.
His sleep had been disturbed by snoring and apnoea, and he couldn't really eat very well so he was very skinny. These were the reasons they didn't hesitate to remove them.
He ate and slept so much more comfortably.
My very small ds2 is having his out in 3 weeks he has just turned 3 but is only 12kg he can't sleep struggles eating and sounds like he is snoring even when awake. I'm nervous about the op but have been told the difference it will make is worth it.
He has been in and out of hospital and on permanent antibiotics as it has made him so unwell
I'd do it, my DS2 had his out, as well as his adenoids and then had grommets put in. His throat used to be so bad, bless him and he really suffered.
I was exactly the same as a child, but they never removed them. I didn't grow out of the problem and instead nearly died from a very bad infection 3 years ago. They then removed my tonsils and i wish i'd had it done as a child, because my recovery was much longer/harder than his ( he was back to ' normal' the same day !!!!! It took me 2 1/2 weeks !)
Wow. Thank you all do much for taking the time to reply. I'm terribly sorry to hear about your uncle Sim and it is terrifying to hear but I am aware of the risks that accompanies any op/anaesthetic. Ultimately we know that his quality of life is being affected and with no guarantee of him growing it out of it and all the positive stories here we are now being re referred and will be on the waiting list fairly soon I hope. Once again thanks.
My 6yr old DS is also on the waiting list to remove tonsils & adenoids. He's never had infections but they're very enlarged & cause him to snore & sleep apnea - it's painful hearing him almost struggle to breathe at night. He's very pale & always looks like he's not had any sleep and is a very poor slow eater which they've told me should hopefully get better after the op. the oxygen saturation levels in his blood were measured & are slightly below what they should be due to his poor breathing. I am dying for him to get the op! The dr said in his case there was not much point in waiting the 3 years to see if they get smaller themselves as they may get smaller but they may not & that's another 3 years of him suffering. I totally understand your apprehension about him having an operation but I was assured that its a very straightforward common procedure albeit they only do it now when necessary and nowhere near as much as 20 or 30 yrs ago. Good luck!
Hi - my daughter had her tonsils/adenoids out when she was 3 for v similar reasons as listed above. I would highly recommend a book called Goodbye Tonsils. We had to adjust the story slightly as the main character had recurrent tonsilitius - rather than finding it hard to swallow as your tonsils are too big - but my dd2 found it really helpful. I got it from Amazon
dd2 had her tonsils and adenoids out aged barely 2. She had terrible sleep apnoea, and was eating less and less - she looked like a half starved spider with black shadows under her eyes, and the noises she made at night were awful: we videoed her asleep to show consultant on first visit and she was offered an operation two weeks later!
She was unlucky in the sense that she had a lot of pain for a few days after the op, which meant constant pain meds a few minutes before the allotted time to stay on top of it. BUT she recovered fast after that, and within a few weeks was a different child - thriving, putting on weight, energetic, gaining milestones, sleeping well. I would not hesitate for a moment, tbh
dd also has two friends who had their tonsils out aged 4-5, and both sets of parents would say the same thing. No more endless infections, pain and missed school, much happier children.
If you do decide to go for op, OP, do post and we'll all share tips with you - its not as bad as you imagine, honestly!
LubyLu I feel for you while you wait - hang in there, its worth it xx
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