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.

Sounds awful for you to all cope with this.
Would going private be an option? Someone at work recently went to poland for tonsils removed.

It is awful ☹️
im on my own and low income so simple answer is not really. I can put the private consultation fee of £250 on my credit card but imagine I’ll be told the same that she needs them out, but I’ve not idea what that would cost and imagine it’s above £5k which is nowhere in my reach.

19 year old DD had tonsillitis almost constantly right from Christmas until April when she finally had them removed. She had 10 courses of antibiotics, none of which fully got rid of it. Every time it just came back after a few days and she was so tired of feeling rubbish all the time. We are very fortunate to have insurance hence how things happened so quickly, the GP said she’d wait years if we hadn’t. Looking at what was billed to our insurance her surgery was around £1.5k including consultations

What antibiotics has the GP given your DD? When we saw the ENT consultant he reckoned that she should’ve been given far stronger ones from the start (eg: high strength co-amoxiclav) rather than just penicillin etc every time which allowed it to become chronic. Is taking her to A&E to see if they’ll give IV antibiotics an option? Our GP recommend that DD go twice but each time they just sent her home, maybe they’d pay more attention considering your DD is quite young though?

This is so helpful for 2 reasons - thank you. It’s so so nice to know it’s not just my DD getting it so often (though I’m sorry your’s did ☹️)
also re: the cost Which I’m wondering if I couldn’t put on a 0% interest card and pay it off eventually. It would be worth it to not go through this for 2 years.
we have been to a&e twice when she’s spiked high fevers with it on a weekend, all they do is swab her and say it’s likely viral, only to call 2 days later and say oh yes it was strep A. I asked about IV antibiotics but they said they’re only used if she can’t take them orally which she can.
no one has mentioned / offered another antibiotic so I wonder if it’s worth me pushing for that the next bout she gets. thank you 💞

Could this be a solution? I was trying to find the coat of private for you and I came across this - basically stating that any NHS patient has the right to choose where they have there care and that many patients choose care elsewhere from their local hospital as they may have a shorter waiting time. This private hospital also takes on NHS patients for this reason it says you can enquire about it. Might be worth looking into!

practiceplusgroup.com/nhs-patient-care/

Really feel for you and your DD, this must be awful for you both and I really hope you can find a solution soon.

No problem - I really feel for you both and hope she gets sorted soon. I know that one of our local private hospitals offers payment plans if that would be an option? We are in NI but I’m certain that others around the UK would have similar. Completely wrong that you should have to even think about going down that route though, we pay taxes for a reason!

We’re having to go private for my son. It’s £3500 for tonsil and adenoid removal and they offer payment plans so we’re going to be paying roughly £130 a month for 2 years. Feel free to private message me for more info.
After the initial consultation we were given a surgery date for 8 weeks later although it could have been within 4 weeks!

I work with speech and language therapists including some who are voice/throat specialists. My DD was getting recurrent ear infections and like you was on the ENT waiting list for over a year. In the meantime a colleague at work recommended that we use a humidifier in her room at night. It makes the room insanely damp as you’re basically putting (cold) steam into it all night so it’s not great if you live somewhere with damp or mould tendencies but she went from having an ear infection every 3 weeks to having one every six months. I’m not sure if the same would work for throat infections but it’s worth a try. We got our humidifier off Amazon for about £25.

Sorry my maths is terrible maybe more like £170 a month. Anyway you can choose your own payment terms and spread it over a longer period if you want to lower the monthly amount. And the first 10 months are interest free

My Dd had IV antibiotics as she couldn't swallow due to the tonsillitis. And actually thinking about it she hasn't had any issues since which is strange.

Have you tried the difflam oral rinse to provide some comfort and pain relief when the throat is bad. At the first niggle of sore throat my Dd used to use this and it really helped.

Could someone else help with your son when Dd needs your full attention?

I feel for you all sore throats make you feel dreadful and it's impacting you all.

I had tonsillitis chronically from age 18-20, every 2-3 months. Sometimes had antibiotics sometimes not. Almost had them removed in an emergency situation but steroids got it under control. Anyway, the things that helped me (and I know some of these seem a bit mental), 1. Drinking lots of pukka mint tea, it’s the best mint tea going as it’s several kinds of mint and mint has antibacterial properties - one cup a day, more if my throat was starting to prickle and more often than not it would nip it in the bud 2. Getting plenty of sleep (appreciate your dd isn’t going out clubbing twice a week but I was and that really effed my immune system up so that had to go) but I’d look at sleep quality. 3. Massively overhauling my diet, eating plenty of veg but also I was vegan and I went back to eating lots of quality meat and dairy and that helped me break the cycle too.

I’m not trying to suggest that you’re not trying everything you can but this is just what helped me personally. Touch wood I haven’t had tonsillitis in about 8 years now.

Also I hate to be the bearer of bad news but I also had a friend, a few years younger than me who had hers removed a couple of years ago. She still gets recurring throat infections sadly so it’s not guarantee to solve the issue.

Also as above PP - difflam spray was amazing for when the mint tea couldn’t quite cut it! But same premise, getting the antibacterial coating right into the throat!

Oh wow i didn’t know this, thank you. I’ve not heard of this before. I’m in a Scotland so not sure if it’s same here but I’ll look into it today. Thank you 😊

Thank you 😊I’m in Scotland and only one I can find near me is BUPA and I’m wondering if they could do payment plans. I get dla for my son so could try and allocate some of that towards this. Not ideal but truly feel at crisis point.

Thank you so much - I’ll Pm you. Urgh it’s a lot but not the £5k+ I was fearing.

First 10 months interest free v helpful indeed

Oh wow that’s interesting I’d not heard of this, thank you. Unfortunately our flat is a bit prone to damp but it’s worth a try for sure as I’m at breaking point waking each morning and first thing I do is feel her wee head to see if she’s got and heading for another bout ☹️

No not tried a rinse so I’ll look into that, thank you.
sadly Ive no one else to watch my son, it’s hard being single ☹️

Thank you so much, I’m so glad you are now better. I’m nothing of short of obsessed with her getting enough sleep ☹️☹️I work so hard to make sure she gets 10-11 hours but even when she’s well she wakes a lot at night (4-5 times) ☹️

It’s probably less too if you don’t need adenoid removal

Sorry if it’s a silly
question but how do you know if you need adenoids removed too? No one has mentioned them before.

Hi @wobblymum1 I have literally been exactly where you are. Exactly. And I understand what you mean about the anxiety, the missed school, missed work etc.

We were referred to ENT pre covid - DD was seen quickly but as she wasn’t quite 3 they wouldn’t proceed. She was booked in again after she turned 3 in March 2020 - we all know what happened then! All appointments got cancelled and when GP re-refered her in March 22, the referral was declined!!!! We had to get her seen privately (at the Nuffield - just over £200) they were stunned the referral was declined, moved her back to their NHS list where we sat for another miserable year. Chased weekly, made friends with the secretaries etc. was eventually told that basically priority would be given to kids with risk to life (understandably!) and as she didn’t have obstructed/apnoeic breathing at night she wasn’t at the top of the list. They then heavily encouraged me to see what her breathing was like at night whilst she actually had tonsilitis and everything was swollen etc ….I did so and realised (genuinely) her breathing was actually compromised - poor sats on oximiter, stopped breathing and would gasp for breath about 20 seconds later, making choking and spluttering noises etc. recorded them on my phone, went back to ENT to explain and low and behold, surgery happened within 10 days!

Now obviously I’m not suggesting you lie, and you would need some kind of video or audio recording to evidence what is happening anyway, but In our case the suggestion we monitor for apnoeic episodes during tonsilitis bouts was a total game changer and I just wanted to share the suggestion with you incase it hadn’t been pointed out to you already and by some small chance it could help your case and move things along somehow.

I can’t tell you how much I feel for you and how much I understand the angst and every word you’ve written in this, and your previous post. It’s a horrible illness that can ruin the whole families life; your career prospects and your child’s education. I have no clue why families are left to flounder I’m chronic cases and children aren’t helped sooner. It’s big surgery and a rough recovery, but in chronic cases it’s also life changing and shouldn’t be dismissed so readily.

From one tonsillitis mum to another - keep pushing and fighting, you’re doing an amazing job advocating for your daughter xx

Hi. I can relate to this so much from your daughters perspective. I was so poorly for Years from the age of around 7 until I finally had my tonsils removed at the age of 13. I missed so much school and was constantly on antibiotics over those years. I'm 39 now (to give time perspective) and my parents fought so hard to have them removed, but it was a fight, despite almost monthly reoccurring tonsillitis.

I can't help but think that the constant years of infection and illness and recurring antibiotics have REALLY impacted on my health further down the line. I could of course be totally wrong on that, but I suffer with chronic illness that can be triggered by infection, amongst other things (ME) and I often wonder if this was the cause. But I'll never know that for sure of course.

As a mum of 4 with my eldest being 19, I think with what I know about how chronic reoccuring illness can impact the body over time, (reoccurring stress response on the body, weakened immune system etc) I'd like to think that I would seek alternative solutions to get the situation sorted quicker than the NHS could offer.

Obviously it's a tricky one because it's so expensive to go private, but if this is a feasible solution for you, then I'd really consider it as the best option for your daughters long term health and wellbeing.

Sorry if that's a bit doom and gloom, but mine was left for so long and had such a big impact on my overall health.
sending hugs & wellness to you and your daughter xx

Thank you so much for your honesty and advice. I feel exactly the same way and this has really given the push to explore
payment options for private as this simply cannot be good for her long term and it’s killing my mental health

Hi OP, I had recurrent tonsillitis as an adult. I'm not a medic so maybe this won't work for your daughter as I imagine is bacteria dependent but this is what happened with me:

I had tonsillitis every month. Even ended up in hospital twice. Same 10-14 day penicillin course each time, always back. It was hell. After 5th round of antibiotics, when it came back the 6th time I put my foot down and said clearly it wasn't working and I wanted something else. They eventually reluctantly gave me a double treatment. They gave me the penicillin, but also metronidazole too. It got rid of it and didn't come back before I got my tonsils out about 6 months later. Now metronidazole is hard core and wasn't easy to take so if they do think thats an option for strep then be prepared for resistance from your daughter. I couldn't swallow it unless it was in pepsi for some reason. My throat just ejected it if it was in anything else.

As for the waiting list, I took to my consultant appointment a list of how it affected my life. How many course of antibiotics? GP visits? Hosptial stays? How many phone calls to either? How many tests? How many days off work (i guess in her case school for her, work for you)? Things I'd missed out on or was going to miss out on? I couldn't get travel insurance to cover it as pre-existing medical condition so I was looking at not being able to go to my sisters destination wedding, or a work trip to USA which would have been amazing for my career because was I hell ending up in an American hospital with no insurance. What family occasions/trips etc was she too ill to go on? How you can't book activities etc because you know she'll likely be too unwell to go. I went from consultant being reluctant to perform the tonsillectomy to being put on the urgent list. It was done 2 months after that appointment. Again, can't guarantee that would work but really spelling out all the parts that matter - how much NHS time you're taking up, what she's going through, how that is affecting the life she is able to live can help. They may be doctors but it probably hasn't happened to them so they don't understand the little things that really impact.