Advice on child's huge tonsils needed!!!

[charlie1000]

Hello, I'm in need of some advice. My eldest son is 5 and has always had huge tonsils. They are quite lumpy and almost touch in the middle, therefore his speech sounds very nasal and he breathes through his mouth a lot. I went to see my GP about this and she was lovely and casually assessed him while he chatted with his younger brother. She agreed with me that his speech was very nasal and that his tonsils are indeed huge. He was then referred to see an ENT specialist who I found pretty unhelpful and I actually came away feeling more confused than ever. She made me feel as though I was wasting her time as my son was not ill from his tonsils (although he has had several bouts of tonsilitis since he was born). She didn't even listen to him speak and then went on to tell me all the complications that can arise from a tonsillectomy, including the fact that he could bleed excessively and may need a further to correct this (all said in front of my son, who was petrified). Obviously I don't want my son to have unnecessary surgery but at the same time I don't know whether his speech will improve in time or could it get worse? Several people have commented on his speech including a friend of mine who is a school nurse and it's now bothering me as I don't know what to do next! Has anyone here had any experience of enlarged tonsils affecting speech? Also, he sleeps with his neck craned upwards and snores heavily but I don't think he has sleep apnoea as far as I can tell.
Thanks Charlie

hi charlie1000 i have been taking my 7 yr old son for the last 4 yrs to the docs,to be told he has never had tonsilitus,but his tonsils are so large that he gags at lots of foods cant bear to swallow,and is often sick he also has problems breathing while asleep because he so nasaly if his mouth is closed he froths at the corners of his mouth bless him,anyway to cut a long story short my doc referred him to a specialist at the local hosp, the consultant said he will reffer him on for a tonsilectomy and removal of adenoids, he has appt to be seen for a further check on them on 11th feb'09.i had my tonsils removed when i was 5 in london and have had no problems although that was a whopping 31 yrs ago lol ,my appetite increased and my mum had never ever seen me have an appetite and eat so much lol,i will let you know hat happens best wishes lucky4some x x

Hi Charlie, sorry you had such an unhelpful (and insensitive ) ENT consult. My dd2 has tonsils that touch in the middle, almost, and she's just 2 - is having them out next week, on the grounds of bad sleep apnoea and inability to eat much when she has a cold.

I think speech is a very good reason to get a second opinion from someone more helpful - it may be that your ds will grow out of the tonsil issue (apparently they are at their biggest, in proportion to the rest of our windpipes etc, from 3-6yrs) or it may be that someone else advises surgery. Either way, you and your ds deserve to be seen by someone you both trust and feel heard/seen by, who doens't have an anti-surgery axe to grind!

FWIW, my dd's consultant didn't bat an eyelid about referring her for surgery, and she has complications in the form of a floppy larynx - which means a night in HDU. I think if he was concerned about her safety, he wouldn't have - she's not an extreme case, though more than mild, for sure.

Would your nice GP, if you went back and told her how unhelpful the ENT woman was, send you somewhere else for a second opinion, maybe?

ps she's never had tonsilitis either, thank god, because if she did she'd have to be intubated with tonsils that size. Its definitely NOT the only criteria for removal.

Thank you so much lucky4some and Elibean, that is very helpful and reading your replies does make a lot of sense that yes I should go back for a second referral. I have been discussing the issue a lot with my DH over the last few days and having both been at home with DS over Xmas it has made us realise that his speech certainly hasn't got any better over the past 6months, if anything I think it may have deteriorated slightly.

lucky4some I know where you're coming from with your son and frothing at the mouth- my son also does this and strangely enough I have just been observing my son do exactly the same thing tonight whils sleeping and it made me feel sad that he's craning his neck up so high just to breathe properly. I would love to hear more from you and how your DS gets on with his appointment at the hospital. I wish you all the best with this and hope you get the answers you need.

Elibean you are so right that having tonsilitis should certainly not be the only criteria for this kind of referral. I think that really struck a chord when I read that comment and it's definitely given me the incentive to make another appointment with my GP. I'm absolutely sure she will refer me on to another consultant. Since asking around, I have heard from several people that the first consultant I saw is not liked by many!

Thank you so much for your comments. It's a great comfort to speak to people who genuinely understand!
Charlie

ps- Elibean, I hope all goes well for your daughter next week and she has a speedy recovery. Let me know how it goes x

Thanks, Charlie, I will. Good luck getting another referral, I'm sure a GP who listens the way yours seems to will respond!

Has he had his hearing tested?
My ds had a lack of speech (about 6 words age 2.5yrs) and also gagged on food, sleep apnoea, really loud snoring, and dribbled constantly. The speech problem was partly due to his enlarge adenoids blocking the tubes to his ears which meant he had chronic glue ear.
If your son has glue ear then it would be another reason for having his tonsils/adenoids removed. It made a tremendous difference to my ds (he wasn't eating, sleeping, talking or breathing well, and then overnight he was jabbering away and sleeping all night).

Hi Millarkie, Thank you for taking time out to post on here. As far as I can tell, DS has no hearing probs. Obviously I would like this confirmed by specialist but I don't think this is the problem. He doesn't so much have a problem with the amount of vocabulary but more the sound which is very nasal. However I do think I need to get something done as the last few nights I have been checking on him more while asleep and he certainly snores loudly (more so than I would expect from a child) and seems to stir much more when he's lying on his back. He doesn't wake up fully but it's not a restful sounding sleep either. Very noisy breathing and some gasping, then he rolls over and changes sleeping position. In your opinion is this some form of sleep apnoea (even though he doesn't really wake up?) I'm planning to get an appointment this week after school one day so hopefully will be referred to a more understanding consultant!
Must fly, got to do school pick up.
Thanks again

Yes, sounds like sleep apnoea - but if you are uncertain ask if the doctors can arrange a sleep study (they didn't bother with ds since he was so obviously affected). Our ENT consultant just said 'does he sound like this when he sleeps?' and then did the snore, snort, gasp. And we said 'Yes!'

Hi Charlie1000, i took my son to the local hosp yesterday,i saw the registrar, he asked questions and gave my son a good look over, he says his tonsils are definitley too big and he thinks it will be beneficial what with his eating and breathing to remove his tonsils...he said while hes under anaesthetic they will see about removing his adenoids too, the waiting list is anything up to 4half months time,i asked for him to be brought in within 48 hours notice if there is a cancellation too he said thats fine !!! Yes there are risk factors he gave me a leaflet for op's on adenoid and tonsil removal its only a 2% chance of a major bleed requiring more surgery, he will have to have 2 weeks off school which my son was qute chuffed about bless him lol, i hope you have had some luck with your child getting seen to ? i'll update u and let you know how everything goes !!

hiya

My little boy had both his tonsils and adenoids out in october 07 when he was just over 2 1/2 years old. We battled with ent consultants for about a year because he constantly sounded like he had a cold,snored for england and what speech he did have was very nasal.Even when he was a baby he couldn't have his milk and breathe at the same time cause his adenoids were so enlarged. They basically said that yes they probably did need taking out but was not necessary at that time but to come back in a few years and they'd review the situation. Luckily hubby has medical insurance through work so we bite the bullet so to speak and saw a private ent consultant (crazy that you have to do that to get some decent advice!) who saw DS and said within seconds of us walking into the room "well I can tell why you're here without even reading his notes-he needs his tonsils/adenoids out". 2 months later he had the operation and despite being very grumpy coming round from the aneasthetic he was a absolute little star. He was running round the ward eating crisps (which they told him to do btw!) about 1 hour after the operation. I honestly can't believe the difference it has made to all our lives (which sounds dramatic but true lol!)...his speech just came on leaps and bounds and now we can't shut him up and it sounds "normal" rather than like he's got a cold all the time. He's got so much more energy and when I mentioned this to the dr he said it was probably because he wasn't getting enough oxygen in at night and wasn't sleeping well enough.
What I am trying to say is please don't get fobbed on by any doctors...yes it is an operation but in the grand scheme of things its relatively straightforward and it can make so so much difference. Any questions just shout!

hi charlie1000, my son is having his tonsils and possibly adenoids out next week(23rd april) they have booked a bed incase an over night stay is required,because he may have sleep apnoea, will let uu know how it all went after take care x x

Hi Charlie, just to let you know operation went really well,my son didnt need to stay in overnight,he's had earache and obviously very sore throat , but hes doing well never complaining bless him he's having the 2 weeks off school and no visits to supermarkets or shopping centres till after 14 days but well worth staying in if it means he doesn't catch anything ! hope you get ure child sorted soon, i'll keep looking on here for updates, take care x x

My son, who is almost 5, has enormous tonsils. He doesn't get a lot of tonsillitis though. In fact the one time he did have tonsillitis his tonsils didn't hurt. Very odd. When we were in America they took one look at them and said 'take them out', but doctors in this country are a little more cautious. He does snore at night, and always has (very funny in a tiny baby) and he does have difficulty breathing through his nose, which causes him to dribble quite a lot. I don't know if this might be more due to his adenoids rather than his tonsils or not. I don't want him to go through an operation if he doesn't need to, but I don't want him to be teased at school for dribbling either. Any advice?

Hello Charlie 1000, I know this is an old thread but you are describing my 4 yr old exactly! All the same symptoms, do you end up having the surgery? Or did you skip it and how is he now?

Hi expat interested to know what happened here? Did he have them removed? Thanks