Anyone up for a 'waiting for ENT referral ' support thread?

[poachedeggs]

DD is 2.7 and we're waiting for an appointment regarding sleep apnoea. We've been through it with her brother and so it's frustrating seeing her so tired and miserable when we know she'll probably need her tonsils and adenoids whipped out.

I see there are a couple of similar threads on the go so wondered of anyone fancies joining for a moan festchance to share support and experiences?

[charlmills]

We are currently waiting on an appointment from the Ent for my ds (23 months ). He's got his second bout of tonsillitis now in 4 weeks. Trying to get it pushed through as urgent but it not easy.
He's suffers from sleep apnea, snoring,tiredness, mouth breathing, constant colds etc.
I feel so Sorry for him and really don't want to be giving him all these antibioticsall the time.
I just Hope they will suggest they Take them all out as we never get proper nights sleep and have had to Take so much time off work.
so Yes I'll join you for a moan.

[poachedeggs]

Much sympathy! DS was the same, except he only had tonsillitis once. It was the apnoea which was the real problem for us. The good news is an adenotonsillectomy is an instant fix. Recovery is tough, I won't lie, but very much worth it.

[Shattereddreams]

Evening ENT waiting room.
So I want to be in a gang and hold hands. DS is 3 in a few weeks. Luckily I am a tough old bird so I insisted on a referral to ENT to the GP who obliged, even though DS wasn't keen on showing her his tonsils.

Had to wait about 8 weeks for the appt which was yesterday. I was gearing myself up with explanations as to his symptoms. I fully expected to hear "too young, not enough episodes, not serious to warrant surgery".

So I listed
Three bouts of tonsillitis Nov to March
Snoring
Dribbling
Lack of appetite and lack of weight height gain (he has fallen from 75 to 25 centiles)
Snorting
Permanent runny nose
Voice stuck in his throat

Then the Consultant looked in his throat, said "we'll they can come out to vastly improve his quality of life".

So now I am having surgery mummy worries. I am lucky, I have private so in theory if I can get time of work, he will be having surgery within weeks.

I didn't mention private until after the doc had looked and said surgery. And he doesn't do private so I had to see his colleague who does.

I am a bit shocked even though I wanted him to see ENT.

[charlmills]

That's good to hear, Thanks. I Hope u get you referral soon - it's so frustrating isn't it? Trying to talk try to anyone is a nightmare and their communication between each other is non-exsistent.
I have so Many bad experience s of GPS, hospital, referrals and test s that I have no faith anymore that the right things will be done. You have to push hard to get what u need. IYSWIM.

[charlmills]

Well done shattered dreams. This is giving me Hope.

[poachedeggs]

That's great Shattered. Waiting for surgery is awful, but the improvement in quality of life for the poor wee things is incredible. DS's attention span and concentration was better, he was less prone to random tearful outbursts, he could listen and process instructions, he stopped a lot of his overtired twitchy behaviour and was just so much happier.

I didn't miss his foul breath and earth-shaking snores either.

[Shattereddreams]

It's hard because DS speech is amazing, his vocab is vast, and so clearly there is nothing wrong with his ears. The doc looked in his ears and said they were normal.

I've been reading back on MN and feel like I have cheated some people with children whose speech is delayed and they need grommets etc.

But equally lots of people mention appetite and this is my biggest worry. I am desperate for summer so he can wear his age 12m shorts! Trousers are a nightmare as 12m are a bit short. I want him to gain some weight.

DH has worked in NHS and he sort of knows how to achieve what you want, the right sort of assertiveness really.

[Shattereddreams]

Charmills I have seen you on some of the tonsil threads I searched. Your DS has been suffering a long time too.

My DS always gets tonsillitis on a Friday evening so we spend hours in A&E as our out of hours is utter shite.

[poachedeggs]

Shattered, DS also had a fab vocabulary and his speech was good. He's subsequently developed mild glue ear but at the time of the op his main problem was exhaustion.

[girliefriend]

Evening all

My dd (7yo) has been in and out of the ent waiting room for the last 5 years has had 2 sets of gromits and her adenoids and tonsills out and unfortunately the bloody glue ear is back and we are now picking up a hearing aid next monday

Am really hoping it helps as she is struggling again with deafness and school.

The consultant said they might do a 3rd set of gromits but dd not keen at all on having another op and I can't blame her tbh.

[charlmills]

Poachedeggs I'm really hoping that it will improve ds behavior. He's had no attention span and is also prone to tearful outbursts, he seems so frustrated all the time. Probably to do with his age but it's extreme. Not sure about his speech yet. He's got good vocabulary but he's miles behind what his sister was at his age. But that could be boys and girls - not sure.
I can't believe how much all this could be effecting him.
Shattered you shouldn't feel that you have cheated others you do What's right for your child and you.

[charlmills]

Girliefriend that sounds really hard. You must feel so drained with it all. and your poor dd, they shouldnt have to go through all this. Hopefully you'll get it all sorted soon.

[Shattereddreams]

Girliefriend I'm glad you are in the system so to speak.

I guess it's frustrating waiting for follow ups and action. There is a boy in DD class who they have been fannying around with gromits. Lets see how next year goes. Lets see how 6 months goes. The poor boy is getting more behind at school and he can't hear. Hearing the sounds in phonics is so important.


Today I called Bupa and the local private hospital. DS will see the consultant on MONDAY! He isn't three for a few weeks. Bupa said this particular hospital won't treat under 3 so it's not a magic number for tonsils, just that hospital.

So I'll be back Monday to update, I expect we will agree a date for surgery. gulp

[girliefriend]

Thanks charlmills and shattereddreams, yes it feels a bit never ending at times. They keep promising she will grow out of it no sign of that yet unfort.

I am just keeping everything crossed that she gets on well with the hearing aid and can avoid another operation will let you know monday how it goes with audiology.

[poachedeggs]

Your poor DD girlie. With DS we thought we had it all sorted, then he went back to square one the following autumn. It's taken 18 months but we've finally got the asthma he also had under control, and at last he's able to sleep properly all night. So I can sympathise with the ups and downs, you think it's sorted then your heart sinks when it's taken away again. I hope the hearing aid makes a good difference to her.

[poachedeggs]

Shattered, good luck for Monday :)

[girliefriend]

Hello ladies, my dd got her hearing aid today and so far so good she is really pleased with it and already making a big difference with her hearing, things like we were walking down the corridor after the appointment and she said 'I can hear my feet walking mummy'

Got follow up appointment in July so waiting for that now!!

[charlmills]

Aww that's that's really nice girliefriend. Glad your dd likes it. Fingers crossed that it'll be it and she won't have to go for any more ops.

[Shattereddreams]

Great news girlie. Bet that's a relief. And instant feedback from DD.

Our appointment was procedure, just need to call the secretary and book date for surgery.
Surgery day is Thursday so plumping for the one after his bday. Poor chap !

[poachedeggs]

Brilliant girlie! Lovely to have instant results.

Also good news for you shattered, will be nice to have the op out of the way quickly.

DD has been sleeping through but waking at 5, so is really tired. She has cried since waking this morning. She's just exhausted, not sleeping properly and waking early, falling asleep mid morning and napping for two hours. She's utterly miserable and we haven't even got her initial appointment yet. And I KNOW what needs to be done, so annoying :(

[Elibean]

Popping in to cheer all in the 'waiting room' on. The wait part is the worst, I'm so sorry that your LOs - and you - are having to wait at all.

But you are all amazing for ploughing on, championing your children, fronting stubborn GPs as necessary, and hanging in there. Hopefully it will all be worth it - definitely was for my dd2

[Shattereddreams]

All phone calls made and surgery booked for 27 June, a couple of weeks after his bday. Made me feel wobbly.

Today he has eaten no breakfast (fairly usual) probably had a biscuit and fruit at preschool, then a frube, less than a 1/4 ham sandwich, 5 grapes and a freddo bar in Morrison cafe. Refused his dinner, the offer of cereal and a hot chocolate. Looked in his throat and his tonsils are huge and red again, not full blown or spotty. It may come. He fell asleep on sofa at 6.30.

This pattern is pretty normal for us, missing endless meals, not wanting to eat beyond the first mouthful of sandwich.

So a month and a bit to wait! I just want him to eat a full meal three times a day. Grow a squidgy bottom

Any decent magazines in the waiting room?

[poachedeggs]

The ball is rolling Shattered, I know it's scary but it will help so much.

I'm on my phone just now so can't link but there is a study which links adenotonsillectomy or tonsillectomy with obesity. I can't remember the details I'm afraid. It didn't look at causative factors but I can imagine if your child's eating is very poor before the op it must affect the parent and the child's relationship with food.

I don't mean to worry you - for me the op was still a no-brainer for DS - but he has since filled out and was noted as having a high BMI by the school nurse. That was 6 months ago and he's been checked again and is back in the right range, but I am careful and watch his diet and activity levels carefully.

[girliefriend]

Really poached? Haven't heard that before, my dd has had adenoids and tonsills removed and I haven't noticed that much difference in her appetite.

Mind you she has always been a bit all or nothing when it comes to food and very active so I am not going to start worrying just yet

[poachedeggs]

m.oto.sagepub.com/content/144/2/154.abstract

There's a link. As I say, it's not a reason not to have the procedure done at all, but something to perhaps be mindful of. My impression is that it's likely to be a combination of previously slow, troubled eaters finding it suddenly easy to swallow, and perhaps anxious parents who are used to coaxing their unwell DC to eat.

Mine have always seemed to manage vast amounts of food despite huge obstructive tonsils but it's possible they've inherited my pig genes