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Children's health

Adenoids and tonsils - help!

15 replies

charlmills · 17/04/2013 14:36

My ds is 22 months and has what I believe to be swollen adenoids and I can see swollen tonsils. This has been going on for about 10 months and Dr finally referred him to ent a Few weeks ago. I've just had a call and they can't see him until mid June!
the trouble is he is really bad at the moment think he's got a mean cold and he just can't sleep is constantly mouth breathing, won't eat anything. I'm getting desperate and feel like he needs to be seen now, not two months time.
He also suffers from the obstructive sleep aponea, because of ads and tonsils. Currently I'm actually pretty worried about that. It's effecting the whole family; up 2-3 times a night, days of work. I just don't know what to do. I am so tired and worried.
Not sure what I'm asking really but any advice would be great.

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Elibean · 17/04/2013 14:41

You poor loves, I feel for you! dd2 was exactly the same, with a floppy larynx to top it off. Nights were awful, and worrying, and she actually started to lose weight. All sorted by surgery at 26 months, thank goodness.

Short of going private, I'm not sure what you can do about it, but if you have a good gp I would try having a word. Just say what you wrote here.

If ENT agree and remove tonsils and adenoids, it can be (my experience) life changing. Meantime, wishing you stamina and some virus free warm spring days, and a hand to hold if you want one.

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Goldmandra · 17/04/2013 14:51

You could try phoning the consultant's secretary and asking if they can can you in a cancellation or tag you onto the end of an earlier clinic.

Worth a try.

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charlmills · 17/04/2013 18:11

Thanks for your kind words elibean. And gold that will be worth a try at some point I think.
He is currently at a and e with dh as he has had a really high temp for days now and was really bad this afternoon with a slight rash and couldn't get hold if my Dr. Not sure What's going on at the moment.

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SilveryMoon · 17/04/2013 18:21

My ds1 was the same. He always snored like a trucker but I didn't notice the sleep apnoea until he was just under 2. I was keeping him in bed with me because he had a water infection.
The gp originally told me that it was normal to stop breathing in your sleep Confused where I thought it was only normal to stop breathing when you die Hmm
I took recordings on my phone of the pauses and took that to the doctor. I was told he'd only be referred for removal if he had been treated (Anti-b's) for tonsillitis 4 times in 2 years. The doctor asked me how often he got it, which was puzzling because he had ds1's file infront of him.
Ds1 had been on ab's 6 times in 4 months!
It took me a year of going to the gp every single week to finally get a referral and ds1 had tonsils and adenoids removed days after his 3rd birthday.
He's not been on ab's since, he doesn't snore (although still heavy breathes) and hasn't been ill. He is now nearly 6.
I've always found that I have to become a royal PITA to actually get anything done, so I'd keep on at them until you get something.

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Elibean · 17/04/2013 18:33

I'm so sorry he's unwell, charmills - fingers crossed he's back soon and all well.

My dd was actually prescribed Medised to help dry up the mucous that she was choking on - along with giant tonsils - through the winter she turned 2. She was asleep when we went in to see the ENT consultant (on my shoulder) and made so much noise that he knew straight off what the problem was. Her tonsils were out within a month.

It can take a long time of being a squeaky wheel, but not always. I hope latter is true for you Smile

Meanwhile, get well soon little ds x

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charlmills · 17/04/2013 22:34

Well it turns out he has a very nasty case of tonsillitis . Hospital were great and have Given him ab's.
so I suppose this is all related. I'm going up to gp first thing to try and get this pushed through to get him seen sooner by ent.
I feel so bad for ds - he must be in so much pain as he's breathing through his mouth and that on top if tonsillitis... The Dr at hospital said his tonsils were nearly touching each other.
I think you do have to be so insistent on getting anything done. Hopefully the gp will listen tomorrow. We'll see. Sorry for terrible grammar am very tired: /

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Goldmandra · 18/04/2013 08:13

Poor little thing! He must feel awful.

The sooner they act on this the better.

My DD had really toxic tonsils taken out when she was 9 after taking antibiotics literally every day for about a year. She was a different child afterwards. Her quality of life improved a hundred fold in ways we had never imagined.

Don't allow anyone to fob you off now.

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wigglesrock · 18/04/2013 08:50

We are waiting on a surgery date for dd2 (5). If its any consolation things have move pretty quickly since the Consultants appt. People including GP told me I'd have to fight my corner to get the tonsils out. To be honest the Consultant took one look in her throat and didn't even need to be asked.

I was at the GP with her (her general health is fecked Sad ) earlier in the week and he told me that he had looked up referral to consultant guidelines re getting tonsils out and its 8 cases of infected throats in a year or 10 cases over 2 simultaneous years, it makes sense in my head.

The best thing I did was to get every sore throat logged by GP, I don't bother so much with the abs anymore.

I hope your lo is on the mend soon and make a nuisance of yourself re pushing for an earlier appt.

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toffeefee · 18/04/2013 09:22

DS (3yo) was supposed to be having his tonsils and adenoids out today, but he has a bad chest so it is postponed until the middle of May now.

You do have to be persistent when they are young as GPs tend to think that they won't remove tonsils until they are at least 5yo. We had almost 2 years of taking DS to the Drs every 3-4 weeks with tonsillitis so bad that he would be out of it for at least a week before he would even consider referring him and even then he did it just to shut us up and told us that nothing would come of it! The consultant, on the other hand, took one look at his throat and booked him in right away! Once you have been seen by the specialist things do move quickly. It is so hard when they are ill all the time and poor DS has had so much time off nursery because of it. I'm sure people think I am just a neurotic Mum, but tonsillitis is not just a sore throat, it is an awful illness.

I hope that your DS feels much better soon and that you get seen quickly by the specialist.

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charlmills · 18/04/2013 10:11

Thank you all. My gp is calling this afternoon so am going to try and get things pushed through. Not sure I'll get anywhere but it's worth a try.
Just can't believe they make children wait so long when it clearly has a massive impact on everyday health and well-being for all the family.
Ds is doing OK. Not good at night and looks awful but hopefully with the ab s he'll be on the mend soon.

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Elibean · 18/04/2013 16:54

I'm glad ds was treated well at the hospital, and is on the mend - horrid for him, and for you. Maybe, at the same time, this will push things through faster?? Hospitalisation due to tonsilitis? In any case, wish you loads of luck with GP and hope your ENT appointment comes faster than expected x

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charlmills · 18/04/2013 18:42

Thanks elibean. I'm really not happy right now. I actually went into Dr's surgery this morning to ask for the gp to call me today. She said he would call between 12-1pm. Got to 2 o clock and nothing so Icalled back, Dr running late but will call me today. And nothing. How hard is it to call someone concerning a child.
I've got to work tomorrow and will not be able to Speak to them. Just have yo wait until after weekend now. So frustrating!

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emmajk1979 · 19/04/2013 13:16

Hi - im new to mumsnet - so please bear with me. If you can - you need to download the SLEEPTALK app (Ipad/iphone) its free and absolutely superb. I recorded my daughters snoring that was in my opinion sleep apnoea and took it with me so the consultant so he could hear and see just how interrupted her nights sleep was. It records when it picks up a sound - and you can then see how often they are waking up - and for how long and just how loud the snore is. I took a list of everything that my little girl was suffering from to the consultant and also took the recording - at which point she was referred for surgery. FYI - from everything ive seen/been told/read the NHS arent keen on giving tonsilectomys on children under 4 - UNLESS they have sleep apnoea and or several recurrences of tonsilitus.

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Elibean · 20/04/2013 14:51

emma, welcome to MN Smile We recorded our dd asleep and snoring (more than snoring, but ykwim) and even without that app it did the trick. You are right about NHS, and dd2 had never had tonsillitis in her life but was given surgery asap - just because the apnoea was so bad. Plus she was barely eating solids anymore.

charlmills how frustrating :( I hope Monday brings more luck. You sound exhausted, not surprisingly - so I hope the weekend gives you a break and some sleep, at least!

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charlmills · 21/04/2013 07:45

Thanks Emma. Dh did a recording the other night in which you can clearly hear the snoring and breaks in breathing, so hopefully this will help things.
Elibean - ds is definitely on the mend and has slept all the way through last night, although he sounded like an old man snoring, but that's normal! Although he seems to be full if cold again, really really snotty and a horrible cough.
Going to contact gp this week and hopefully get somewhere. I also need to go for dd as she is deaf as a doorpost at the mo - keeps happening and Dr's keep saying it's just ear wax. I'm starting to think it may be similar problem - ears, nose and throat.
And so it goes on.....

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