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Experiences please of tonsillectomy in young children...should we go for it?

(56 Posts)
bootus Thu 17-Jan-13 15:31:36

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

mrsMeeple Thu 17-Jan-13 15:47:27

I had mine put when I was 4. Sorry can't really provide more useful advice. But the icecream and jelly was good!

mrsMeeple Thu 17-Jan-13 15:47:55

Put =out, obviously.

ShakeWellBeforeOpening Thu 17-Jan-13 16:09:04

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.

Sariska Thu 17-Jan-13 16:11:49

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 grin.

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.

bootus Thu 17-Jan-13 18:09:58

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.

cruxible Thu 17-Jan-13 18:17:07

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.

TheSecondComing Thu 17-Jan-13 18:21:29

Message withdrawn at poster's request.

Slipsliding Thu 17-Jan-13 20:08:11

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.

wigglesrock Thu 17-Jan-13 22:35:22

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 sad

She started P1 in September and I'm not going to let this run on into another school year. I know its only anacedotal grin 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.

homebythesea Tue 22-Jan-13 08:49:22

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)

SimLondon Tue 22-Jan-13 23:22:35

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.

Missymoomum Wed 23-Jan-13 06:05:26

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 smile .
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!

galwaygirl Wed 23-Jan-13 06:45:38

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!

Harumff Wed 23-Jan-13 11:33:48

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.

alibobins Wed 23-Jan-13 12:33:40

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 hmm

DuchessFanny Wed 23-Jan-13 12:40:34

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 !)

bootus Wed 23-Jan-13 12:51:53

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.

LubyLu2000 Wed 23-Jan-13 12:58:36

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!

shivs1974 Wed 23-Jan-13 13:38:08

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

Elibean Wed 23-Jan-13 14:50:13

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 smile

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!

Elibean Wed 23-Jan-13 14:50:52

LubyLu I feel for you while you wait - hang in there, its worth it xx

bootus Wed 23-Jan-13 21:22:19

Thanks so much elibean, really appreciated and great to have somewhere to ask for advice/tips. The consultant wanted to put us on the waiting list last time so I don't think it'll be too long once the initial appt comes through. I feel pleased not to be dithering anymore and to have heard such positive experiences.

alibobins Fri 01-Feb-13 16:33:25

Had my ds2 pre op yesterday and the nurse has now terrified me hmm she said ds will be in lots of pain and it will be a rough recovery. He also had to have an ECG, Xray and blood tests.

Missymoomum Tue 05-Feb-13 13:09:19

That's not a very helpful comment by the nurse alibobins and not something that the posters on here including myself have experienced with their children post op, so hopefully he will be fine. Yes it's good to warn you that they will be in discomfort and obviously not everyone's recovery is the same but it's not helpful to scare you. All being well your DS will be fine. When is his op?

alibobins Thu 07-Feb-13 21:19:08

Ds2 op is on Tuesday sad
Part of me can't wait as ds really struggles to breathe and eat and is constantly gagging but the other half of me feels sick and terrified sad I'm really hoping he will recover well.

NeverKnowinglyUnderstood Thu 07-Feb-13 21:40:57

For us it was amazing change in DS
he had it done the week after his 3rd birthday
he was supposed to be in overnight, we were given a chart for medication (give * at 11am * at 2pm * at 4pm etc) told to give it as per the chart for 2 weeks without waiting to see if he needed it.
he wanted to see them put the canula in (I DID NOT!!) and he wanted to see them inject the white liquid in. and within seconds he was totally asleep and we left the room.
40 minutes later we were called to say we could come in and he was screaming. it really frightened me but he had gone to sleep in one room with me and woken in another with lovely but strange nurses round him.

we cuddled for 10 ish mins and then he said he was hungry.
the nurses said we SHOULD wait a bit but an hour after the operation he had 2 mini packets of cornflakes and some fruit juice.
after that he was jumping on the bed, walking up and down the corridors chatting to the nurses.
The consultant came round to check things and said that as we were doing so well that after 8 hours we could go home so we did.. we stuck to the medication chart and after 2 weeks we missed a dose to see what happened and he was fine.
it has been amazing. eating, sleeping, energy levels. like a different little boy

sorry for the essay but it really was the right decision for us.

alibobins Thu 07-Feb-13 22:10:42

Never that has made me feel so much better thank you.
Dh has booked the week off to juggle school runs and look after me and ds smile

alibobins i can give you another perspective, don't know if it will help or not.
I work in theatres and look after adults and children post op, with around 10-15 tonsillectomies a day.
In my experience, the worse bit for the parents is watching their child go off to sleep, and the waiting.
The children are always given plenty of pain medication before they are woke up so very rarely have any pain in recovery, and are always prescribed plenty for the ward.
Sometimes the morphine gives children a really itchy nose and they are a bit snotty (with a bit of blood stained snot), but generally children ping awake and are back to 'normal' really quickly.
A lot of parents (and the adult patients) are so relieved when it is done, as the experience of surgery is so much easier than repeated bouts of tonsillitis.
Obviously all surgeries have risks but everyone in theatres where I work are complete professionals and have years of experience and training behind them.
Hope all goes well on Tuesday x

alibobins Fri 08-Feb-13 07:48:30

Thankyou smile I am dreading the anaesthetic ds1 has had plenty but is so used to them ds2 is a little more of a sensitive little sole and clingy so I know I will cry. He's so used to not being well he's been on antibiotics for 8 weeks now we have to stop them Monday x

MrsRoss26 Fri 08-Feb-13 07:57:31

I know this isn't what was asked, but for the flip side my DH had his tonsils removed 5 years ago and this was amazing. He had suffered recurrent (i.e. never ending) tonsilitis since early puberty and had several horrid health problems related to this. It took ma-y doctor referrals and an MP's interference to get the approval to have them out.

Since that time he has had no health issues and is strong as an ox grin If you have the option to have them out, go for it and prevent the potentially horrendous adult issues which can be debilitating.

MrsRoss26 Fri 08-Feb-13 08:00:21

Oh, and a fun side.note. The surgeon told my DH that his were the largest tonsils he'd ever removed and he did a lot of those surgeries!

alibobins Tue 12-Feb-13 07:58:30

Well today is tonsil day sad not sure if his adinoids are coming out too the surgeon will decide in theatre.
I will update later.

poachedeggs Tue 12-Feb-13 08:12:32

DS had an adenotonsillectomy shortly before his 4th birthday. It was terrifying, and the first week afterwards was really tough if I'm honest, but it made a big difference to him. He had sleep apnoea so was always tired, which really affected his behaviour and attention span, and he was always very emotional. He started sleeping through regularly as soon as the pain resolved, which he'd never done, and turned into a normal happy boy.

All surgery has risks. Follow the advice and instructions of the staff. The biggest risk is bleeding afterwards, but the doctors will explain it to you. I don't regret it. In fact I suspect DD is now going the same way.

alibobins Tue 12-Feb-13 08:50:46

Thanks poached.

Elibean Tue 12-Feb-13 10:57:14

Good luck ali smile

We've never looked back either (dd2 had hers out at 2, and is now a thriving 6 year old). Biggest tip: make sure you stay on top of pain meds afterwards, give them a few minutes before they are due and don't miss any doses even if he seems fine.

And don't be surprised if crisps go down surprisingly well - rough foods better than smooth or sticky. Let us know how it goes!

NeverKnowinglyUnderstood Tue 12-Feb-13 18:31:53

how did you get on?? been thinkif og you

alibobins Tue 12-Feb-13 19:59:49

Ds2 is doing really well he even managed to eat some sausage and beans smile he had had nurofen morphine and paracetamol so is comfortable.
He went to theatre at 1.30 and was back on the ward an hour later he slept for another 4 hours. The nurses did say the pain usually kicks in when they are at home x x

NeverKnowinglyUnderstood Tue 12-Feb-13 20:40:12

please keep up with pain med schedule..
so pleased things went well. I am sure the difference will make it all worth it smile

alibobins Wed 13-Feb-13 03:12:24

Poor ds is in a lot of pain hmm the nurses are giving him pain relief but he is struggling to take it confused

poachedeggs Wed 13-Feb-13 06:22:51

Unfortunately it does seem to get worse before it gets better sad

In a few days this will all be a memory. I did have to force DS to take his pain relief on a couple of occasions which was awful, but it works to ease things very quickly. Hope this passes soon.

alibobins Wed 13-Feb-13 08:09:27

Any tips on getting him to eat and drink the hospital won't discharge us until he has and he won't let anything near his mouth hmm

poachedeggs Wed 13-Feb-13 18:41:01

Ice lollies or yogurt? Milkshake? DS had a choice of Kelloggs cereals which he enjoyed once the milk had softened them.

bootus Wed 13-Feb-13 20:50:02

Hi alibobins, hope your ds has eaten and been discharged. Thinking of you. We are still waiting for referral appointment, ds is struggling again with his tonsils. It's awful seeing him so pale and skinny!

alibobins Thu 14-Feb-13 09:44:20

We are still here poor ds is now on IV fluids and morphine hmm the nurses did say that children usually bounce back really quick. The doctors have been round and said looks like we are staying in again tonight.

bootus Thu 14-Feb-13 09:52:31

Your poor boy. Really sorry to hear that. Hopefully the pain relief and iv will do the trick and he will be right as rain soon. Quite scary to hear how poorly they can be after.

123rd Thu 14-Feb-13 10:21:03

When my ds had grommets in and tonsils and adenoids out a few years ago he did have to have paracetamol suppositories for two doses. He did stay in over night but was right as rain the next morning. Asking to eat crisps when we got home!!!

alibobins Thu 14-Feb-13 10:27:09

On the plus side the snoring gasping and gagging have stopped his sats were stable so in terms of his breathing I can see the plus side already.

itsallinmyhead Thu 14-Feb-13 10:40:15

My DD, now 14, had her tonsils removed at age 3.

I expected it to be a really teary, painful recovery, especially as she was so small. I couldn't have been more wrong!

She was up and about and eating within hours of the procedure.

It was a massive success; DD's snoring stopped, she was better rested due to better sleep & she has rarely been poorly with colds, viral infections etc.

HTH

Missymoomum Thu 14-Feb-13 15:13:24

Sorry to hear your ds is struggling post op. I feel really bad now being one of the ones telling you that he would be fine! I'm sure once they've got on top of his pain relief he'll come on leaps and bounds. Make sure he gets his meds on time if you're still in hospital, on a busy ward that's not always achieved (i should know as I'm a nurse!) so nag if you have to wink. Also this is a perfect time to let him have as much ice cream etc as he wants this should hopefully encourage him to move on to other foods. I explained to my dd that she would have to have quite soft foods at first and reassured her they would be ok and that helped, although don't do as I did and about 10 days post op I gave her some orange juice which she had actually had had from day 1 post op without me thinking and she must have had a raw spot in her throat and when she drank it the poor girl was crying with pain because it was stinging so much shock. Hope u get him home soon and try not to worry about stating another night we stayed 2 nights with dd.

alibobins Thu 14-Feb-13 22:30:44

Sorry about the hmm faces it was meant to be sad
Ds2 is still in hopefully home tomorrow.

alibobins Sat 16-Feb-13 13:43:06

We are home and the difference in him is amazing he is eating well and playing smile
We are staying on top of pain medicine but think the worse is over.

Suzannesee Sat 16-Feb-13 14:41:37

The longer you wait the worse this operation is for them.

My brother developed terrible bouts of tonsillitis over two winters in the early eighties. He was a bright boy but missed lots of schooling as a consequence.

'Not enough' was the opinion of the NHS consultant to whom he was referred. The sympathetic GP then sighed and told my parents; "You won't get anywhere with this problem on the NHS these days." She suggested they go private. They did and the consultant prefaced his examination by warning my parents that even he wouldn't take tonsils out unless really necessary - he had better more life-threatening ailments which required his skills.

He then took one look at my brother and immediately said; "This boy needs his tonsils out right away!"

And so he did. My brother, who was twelve, had a tough time post op. He haemorrhaged a week later and for a second time a week after that and needed a blood transfusion. It was scary, but he recovered, never looked back, and grew big and strong, healthy guy he is today.

The good thing is you are being offered the operation on the NHS. Go for it!

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