ENT apponitment - What should i expect?

[roulade]

My Ds 2.7 has his first ENT appointment ( supposed to be urgent - waited 6 weeks!) next friday and i was wondering what to expect.
His tonsils are so big they almost touch and he has been constantly ill with throat/chest infections since last august.He has just finished his third lot of antibiotics this year (since jan).
Do you think i should video him sleeping to show the docs his breathing at night? ( very snorey and a bit laboured imo )
Any info would be greatly appreciated as i don't want to get my hopes up!!!

[BexieID]

We had ENT appointment in December. They looked in Toms mouth, asked us loads of questions - especially about snoring at night/sweating as night. They tried doing a hearing test, but Tom was having none of it (Tom is 2.10 and not talking). They decided to take out his tonsils/adenoids and do a hearing test under anaesthetic to see if he needed grommits. He had the op on 28th Jan and his hearing was fine.

Tom had large tonsils, but he never had throat/chest infections though. We have to go back on the 28th April for his 3 month check-up, so am hoping he'll be talking by them or i'm asling for a SALT appointment (which I may do before).

[Elibean]

Hi, dd 2.2 just had her tonsils and adenoids out in Jan. They were touching, and she had dreadful sleep apnoea and wasn't eating solids much anymore.

We did video her (on our phones) and recorded her sleeping too, just in case - but as she fell asleep in the car on the way there, the consultant saw and heard for himself.

Admittedly, he knew her as a baby (she had a floppy larynx, which added to the issues) but even so: he took one look and booked her in for an urgent tonsillectomy etc.

She is now transformed - it was all worth it, and i had loads of support here on MN with how to manage things/what to expect etc.

Good luck, let us know how it goes - I would video just in case, if you can (or record).

[roulade]

Thanks, i will definately video him sleeping
to show the docs. I'll let you know what happens!

[saramoon]

My DD who is 4 has just finished her 4th lot of antibiotics since beg of November. We have an ENT appointment on March 5th and was really hoping she could have tonsils out as she is really ill every time (bout every 3 weeks) and i used to be exactly the same when i was at school and it made all the difference having mine out. Doc i saw though didn't seem keen and said they try not to do it these days.

[Elibean]

They tend not to be keen on doing it to prevent infection, but will definitely do it if there is sleep apnoea (when they stop breathing for a few seconds and gasp) and/or feeding difficulties.

dd has never had tonsillitis, but she gasped all night long and was losing weight - there was no discussion, it was just 'this week or after Xmas?'

[roulade]

Update here!
We had the appointment today and ds has to have a sleep study to check severity of apnoea,if bad ( which i don't think ) then to Great Ormond St to have adenoids and tonsils out, if mild then local hosp will do it.Timescale is about 6 weeks if mild, alot less if severe.
Now i'm scared ( not for ds just neurotic mother!!!)

[Elibean]

Hi roulade, sorry to be slow - was away for half term. Good news re your appointment, thats great - either way, you will get help!

dd's sleep apnoea was bad, but Chelsea & Westminster did her op no problem - she spent a night in HDU as she had extra issues with a floppy larynx, but it was a precaution. I was desperate for ENT to provide a solution, and then of course I was terrified when the op was booked - so you're not alone

Keep us posted, will be thinking of you - when's the sleep study?

[roulade]

Thanks Elibean , i've got to make the appointment for sleep study tomorrow then book another ENT for 2 weeks after to get results so they can decide where to do the op.

[Ledodgy]

They do seem to be being very thorough with your ds roulade. We had an appoinment at alder hey 2 weeks ago they looked in ds1's mouth said his adenoids were huge and gave us a date to get them out there and then. They also looked in his ears but they were full of wax so they said when they get the adenoids out if there is fluid in the eustachian tubes they will grommet him as well. He's going in on 14th May.

Elibean how did you cope with being confined to the house for 2 weeks post op? I'm dreading it especially as our 2 weeks covers the May half term!

[roulade]

I suppose all hospitals do it differently but the doctor did say they needed to know the extent of the apnoea because the anaesthetists wouldn't want to do it at the local hospital if it was bad.
Yes Elibean, do they definately have to stay at home for 2 weeks? No going out at all?

[Ledodgy]

Ahh right Roulade that must be wy it's different where we are. I'm in Liverpool so our local hospital is a main hospital iyswim.

[Elibean]

Hey both

Roulade, I think its right they're being careful - if there are extra issues causing the apnoea (as in dd's case) then extra precautions need to be taken to protect the airway post-op. The anaesthetist in dd's case was very, very careful (and made me pretty anxious in the process, ironically!) though everyone else seemed totally laid back about the whole thing. Its their job, and once I got over being scared by the extra care taken - I was glad they were so careful. So they should be, after all

As for staying in...no, we went out, for walks, little outings, to the park etc, just not indoors cooped up with potentially sick kids anywhere. I did take dd to shops in the buggy after a few days, but I took First Defence hand stuff everywhere, and sprayed all visitors to the house with it and made sure they washed their hands, endlessly. dd actually did catch a cold after 10 days, but was fine...it was only a cold, nothing major.

Its hard when you have older siblings around, but I pulled in all playdate options and dd1 went to friends a fair bit! Or I invited one or two after making sure they were as healthy as anyone could tell, their families too....and made sure they stayed away from dd2 as much as possible. TBH, dd2 was in a lot of pain for the first ten days post op, and very weak from not eating - so entertainment beyond DVDs and Polly Pocket was not an issue.

Trying not to let dd1 eat as much junk as dd2, OTOH....

They still miss the mini ice cream cornets!

(rough food recommended, and she ate that too, but she was sooo thin I relented..)

May is a great month for an op, though, far less bugs than January

[roulade]

Thanks for all your comments, i will keep you informed.Just trying to get sleep study appointment today but waiting for a return phone call ( may have to wait until wednesday as she has been away Grrr!)

[roulade]

I got a return phone call this afternoon asking me to go and pick up the machine to do the sleep study tonight! I just assumed it would be in the hosp but no! He has been hooked up for 3 hours now ( they need 6 uninterrupted apparently )and the alarms have been going off quite alot,the last time his o2 level had gone down to 68! eek!
Do you think this would count as severe apnoea? Or do you think it's the amount of times they drop?
We've got the follow up appointment on 16th March for the results and decision on where he's having the op.

[Elibean]

Wow, that was efficient! I've never done a sleep study for dd, so have no idea....it does sound as though the sleep aponea will be confirmed, but whether its 'severe' or not is another matter. Sorry, not very helpful - but hurrah for you for getting it done, and fingers crossed for the easiest possible route for the op!

[Elibean]

apnoea

68 is a bit eek though, having stayed up all night with dd in HDU hooked up to monitors, I do know that much. Though if its only for a few seconds, it doesn't matter as long as its not happening a lot every night, iyswim.

He'll be sooo much better without his tonsils and adenoids!

[roulade]

I'm looking forward to it in a very scared and worried way!

[Elibean]

Yes, ikwym, exactly

It was sooo worth it though. dd2 currently has a big, snotty cold and cough - and I am not remotely stressed or worried, even at night. First time ever.

[roulade]

Hey all, we had his appointment today and he is now being urgently referred to Great Ormond St hosp due to his apnoea which is severe. So now we wait again! Hopefully it won't be too long, if we haven't heard within 2 weeks then we have to chase it up.
Will keep you updated

[Elibean]

Phew, glad you're getting referred! We have dd's follow-up appointment on Friday, its 2 months now since her op and I can't tell you how changed life is....she's put on weight, sleeps soundly (if noisily still - no apnoea though) and is full of energy. Its sooo worth it.

Thanks for letting us know, and hope the referral is quick!

[roulade]

Me too! I'm glad your dd is so much better!
I just hope it can all be sorted soon, i'm not very good at waiting .
I'll keep updating as and when things happen.

[roulade]

Update!! Great Ormond St appointment on 21st April unless we get a cancellation!!!

[roulade]

We went to GOSH yesterday and he should be going in within the next 4 four weeks for the op. Scary! He had to have a chest x ray and depending on the anaesthetist may have to have an ecg before hand.Should hear soon on the date.

[Elibean]

Great! I know its scary, goodness I remember that part, but its really good you're getting a date now. When you have one, and start thinking of specific worries/questions etc just post and loads of people will give you tips, their experiences, and support

[roulade]

Don't worry, i will!! Thanks!