Help me with recurrent tonsillitis

[wobblymum1]

Sorry for another post but had a call today from Dr at childrens hospital and nobody in real life I can bounce it off to ☹️
history:DD7 is on her 7th round of tonsillitis / Scarlet fever in 10 months. Last 3 have been in last 3
months so I’m literally getting 2-3 weeks with her off penicillin then the next round hits her.
she’s been referred finally to ENT but dr today told me he wanted to be honest and say it’s a 24 month waiting list and we’ll be near bottom as sleep apnea and obstructive breathing take priority.
i asked what on Earth we do in meantime if she now will be potentially ill monthly until the op. He said small chance she’ll grow out of it but basically it’s going to be tough and that she’s essentially a chronically ill child for now with it.

this at minimum means missing a week of school a month, me a week of work and her feeling rotten a week a month where she doesn’t sleep due to the fever.

i lost it tonight with her brother, unfairly, simply due to him making too much noise and clowning around while I was trying and failing to soothe her scarlet fever rash and he said all I do is care and worry about her and not him, which hurts me because he’s basically correct. I live on tenterhooks for the next “my throat hurts” and I’m on my own. Few real life friends and those I have are busy working with their own families and difficulties. I also care for my mum too.

i simply don’t know how to get through potentially 2 years of this. Any advice so so welcome.

Oh @wobblymum1 I have been you-I am not exaggerating by saying DD's years of tonsillitis absolutely wrecked her immune system. She spent years battling-was always sickening, off school far to much-pressured by school to get her back in and def went back too soon, and then the cycle would begin again-I never felt like she had much time of actually being well.

I felt like we were banging our heads against a wall to get help. We also had them out privately and I wish we'd done it sooner. I don't think she had her adenoids out but can't 100% remember. (she is in her 20's now)

I wish you luck!!!

The surgeon who saw my son said it is clear he can’t breathe through his nose because he mouth breathes 24/7, snores and also has a dip in his chest which indicates it’s been a long term problem so that indicates to him that his adenoids are also big and need to be removed. My son has huge tonsils too

I don't think it's quite as simple as a 2 year wait. If your DD keeps getting tonsillitis, then you need to keep going back to the GP and they should be able to escalate your priority on the waiting list. To a previous posters point, it might also be worth getting an oximeter. My DS has had multiple bouts of tonsillitis, and once we loose the ability to control his temperature his breathing and heart rate go and you can measure oxygen saturation/ heart rate with the oximeter. Abnormal readings can help with getting medical care faster.

If you are looking at going private, it might be worth seeing if you can see one of the consultants from your local NHS hospital privately. I've been offered by a private consultant to be transferred to their NHS list for follow up after the first private consultation if we were in area (we weren't) and I've heard of others being offered the same.

Thank you so much for handhold and understanding- it means so much to me.
the school thing Is a big worry as I keep getting
pressured to get her back in and I actually feel nervous each time I have to call to say she’s ill AGAIN ☹️

this is really helpful, thank you. She does wake often in night and is restless and I do wonder if that could be linked to breathing as no other reason I can see 🤷‍♀️

Thank you so so much, I will definitely keep pushing. It really is affecting all our lives and I’m aware I’m an anxious mess barely holding it together most of the time now and it’s so hard on my own. Can’t remember last time I felt happy and relaxed.

Has she had her vitamin D levels tested? Reason I ask is that I was deficient and it led to me getting tonsillitis multiple times. May need a loading dose if she is.

Has she been to the dentist recently? Good level of health otherwise?

Good luck, so rubbish being ill all the time I really feel for her

Also recommend salt gargles at the first sign. Even the strepsils helped a bit.

Not she’s not had them tested but I do give her a multivitamin daily in vain hope of helping her ☹️
we see dentist regularly, she has MIH (weakening of enamel) but otherwise ok.
she is in ok health apart from endless tonsillitis. She’s quite small but always has been so dr isn’t concerned anything else is going on (just me as I’m in a near constant source of panic over her now☹️)

Whereabouts are you based? Can you get to Manchester Spire?

I’m in a village about an hour from Edinburgh

Sounds like you've had loads of good advice. Just to say keep pushing.

My DD1 had similar when she was 4 / 5 and after having her tonsils out on her 5th birthday she was a different child. Best thing she ever had done. Nearly 19 now!

I had mine out at 20 and it changed my life too.

Other hospitals may have shorter NHS lists. If you can attend short notice the surgeons secretary might bear you in mind if they get a cancellation.

Really? This is so good to hear, thank you and so glad she’s doing well now 🥰

do you know how I’d go about asking to go on another waiting list? Our hospital is one closest to us but we could in theory travel to eg glasgow if it helped speed it up

Have you tried increasing vitamin c?

I would also maybe keep something new ready to occupy your son when the times hit that your daughter needs you.