Enlarged tonsils, terrible sleeper, bad sleeper, ent consultant won't take tonsils out 😡😡

[Vickyearles30]

Hi all, I'm new to all this forum but I'm so disappointed Today I don't know if I'm over thinking things and want some advice.
My daughter is 5 turning 6 this year. She has always been a really loud snorer (like a plane taking off) she frequently wakes up with night terrors, so unsettled in her sleep she ends up at the top, bottom and out of bed from thrashing about. She always is very nasally and her mouth is always wide open especially in her sleep and during eating. She also is very tired throughout the day and can lack concentration at times.l and often chokes on food. Anyway I noticed in the car one day she was gasping whilst she was asleep. My mum was with me and asked me to go to the gp as my sister was exactly the same but had recurrent tonsillitis. When I got home I looked in her mouth and she had only a smal gap In her throat. Her tonsils were so swollen they were touching. I went to the gp and they referred her straight Away to paediatrics. When I saw them she said straight away it was sleep apnea and I showed her videos and photos of when they were bad and her breathing episodes. She also said she had large adenoids and asked if she suffered from allergies. She then referred to ent without hesitation and said she warrants surgery without a doubt. I have been waiting since October for this 3rd appointment. Anyway I have been today and they have said enlarged tonsils are common and didn't seem interested in the other symptoms or issues. Her sleep study they did through paed came back regular and her drops are not worryingly low although there are some. But to me it's just one night? Her sleep is awful and I believe a tonsil removal will beneficial in so many ways. She has also just failed 2 hearing tests at school and has been referred to audiology but they just shrugged it off. Should I push for a 2nd opinion. I'm so confused. Any help would be appreciated and sorry for the long thread xx

Definitely get a second opinion. My concern would be that if she gets tonsillitis and they swell, that her airway would be completely obstructed.

Could always have them removed privately

Cupofteaandabuscuitplease, thank you for your reply. I too think a second opinion is needed. I have attached a picture of her tonsils not affected by tonsillitis. To me it's extremely enlarged how can this be normal? I'm so disappointed at the thoughts they they completely dismissed me today. How do I go about getting a second opinion? Go back to the gp?

Try here - www.nhs.uk/chq/pages/910.aspx

My son was similar, also had severe sleep apnoea and reoccurring croup and tonsillitis and they still wouldn't remove them. I staged a sit-in at the new doctors when we moved and he was lovely. Told me my son was an emergency but the emergency list was two years long. We paid for him to go private at Addenbrooks and he's just had an absolute new lease of life. Keep going back. Don't take no for an answer! Good luck!

I'm sorry I don't have any advice but can completely understand how frustrated you must feel.

I have similar problems with DS (6) He has always had enlarged tonsils and our GP referred us as he was concerned that that if he actually got tonsillitis then his airway would be obstructed. The consultant told me that they were normal but that they would do a sleep study. We go back in six weeks for the results but I'm fully expecting them to tell me that they don't need to do anything. He is exhausted all the time and in spite of him having 12 hours sleep a night he is hard to wake up and has fallen asleep on the way to school several times. He has been using a steroid nasal spray for the last 18 months which helps with his nasal congestion but I worry about using it long term especially as all the packaging says for over 18s use only!

I would go back and see your GP and enquire about a second opinion.

Definitely get a second opinion. Ds has exactly the same symptoms and had his tonsils and adenoids out with no hesitation from the consultant. It has done him the world of good.

I would definitely get a second opinion, my DS had very similar symptoms and he had his tonsils and adenoids removed as well as gromits put in his ears.

Did your little one have hearing issue too? Did he have a sleep study done? Thank you x

I honestly thought the study would show something more than it did but her symptoms alone seem to warrant it. I think it's to do with budget cuts but he mentioned post surgery bleeding and only if absolutely neacessary. I believe having it done would improve her quality of sleep etc but they said as she doesn't have tonsillitis that requires antibiotics very often they won't take them out. 😡😡 please let me know how you get on with the results for your little one x

I've had a nightmare with this with DD2. She has large tonsils. They are frequently swollen, to the point that she says that she can't breathe - she can breathe but doesn't like the claustrophobic feeling it gives her.

I've had her at the doctors frequently but don't take her now as they just shrug their shoulders and tell me that because she doesn't have white patches on her tonsils and doesn't need anti bs, they aren't concerned.

Poor girl.

She was tested for glandular fever at one point last year, so I felt like she was being taken seriously, but it was negative so we are back to square one - although I'm glad she doesn't gave GF.

All the ladies that their LOs have had their tonsils out due to symptoms, how did they get on with the sleep studies? Did they get tonsillitis or just the symptoms my DD gets? I'm annoyed that I'm second guessing myself but just know it's not normal x

Hi Vicky, no sleep study was done on my DS. He had a couple of awful episodes of tonsillitis, he was constantly snotty and coughing with recurring ear infections. He would snore like a trooper and developed a really gruff, deep voice. He was sensitive to noise with certain pitches of sound sending him into meltdown and he did have some hearing loss. Once everything was whipped out he returned to normal almost over night. The consultant who removed his tonsils said they were so large they were touching...so I would go for that second opinion.

my dd had sleep apnoea and constant tonillitus, lost weight, was lethargic, sleepy, clingy, constantly at the docs and on antibiotics and was a totally different child soon as she had the tonsils out.

Second opinion and you don't even need a sleep study, you've seen it with your own eyes. Push push push for tonsillectomy it will be worth it beyond your wildest expectations

should add I had to push for it too - I also needed my HV, head of dd's nursery, her grandparents and me all badgering the docs for it!

DS has had his tonsils and adenoids removed in different surgeries at Addenbrookes. Consultant Mr Jonas asked how many occurrences of tonsillitis and removed. His tonsils were very small but he just had the pustules removed so the back wall was left in place. DS has severe disabilities so we would struggle to deal with any post op bleed in time.
His sleep is no better so we think he does just have apnoea.
Found Addenbrookes great but he did suffer from pneumonia after the op as he must have aspirated in surgery !!

They are big!

My dd was 2 when she had hers out, but during the sleep study was de-saturating her oxygen levels into the 70's and was treated with steroids to reduce the swelling. She had grade 4 tonsils touching when not infected, but her adenoids were huge according to the consultant. She also had stridor and severe apnoea, it affected her behaviour. Post-surgery there were complications, her airway swelled and she was nearly intubated. The younger they are the higher the risk as their airways are smaller. She is a different child afterwards, has put on weight after dropping centiles, better behaviour, improved speech and hearing.

I have also seen post-tonsillectomy bleeds before where I work, they are a life-threatening emergency. I would not get the surgery done unless absolutely neccessary. Saying that most tonsillectomies are done without compilcations afterwards.

Get a second opinion, but don't rush into getting it done if it is not neccessary according to medical opinion, they often get smaller with age.

When I was 4/5 I was exactly the same as your daughter. They left my tonsils in even though I had tonsillitis monthly but they took my adenoids out and that stopped the nasal speech, snoring etc.