Recurrent tonsillitis in one year old

[Cdoc]

Hi all

Looking for any shared or similar experiences please as I’m at a bit of a loss. DS is 13.5 months and has had tonsillitis 7 times, the first being when he was 5 months old. 4 of the times have been since he started nursery just in the last 8 weeks. It’s bacterial every time and so he’s had 7 courses of varying antibiotics.

We have been given an ENT referral which is unfortunately over a year on the NHS, but luckily do have private insurance with work and have an appointment next week. I will of course take their advice but have been warned that they are very unlikely to operate before he is 2 due to the risks. We are balancing this against not only the risk of so many antibiotic courses at his young age, but also (which the nurse told us last night) the risk each time of the infection developing into something worse.

On top of it being horrible for him (and us), it sets us back in so many other ways. He hasn’t settled well at nursery, not helped because he’s either not there due to illness, or he’s there but developing the next infection. Solids have been tough with him and every time he’s unwell he refuses to eat almost all solids for a week. There’s then the fact I am taking time off work every few weeks because he’s so unwell.

We are starting to spot the signs earlier each time but twice we missed the early signs and he ended up admitted to hospital for dehydration and low blood sugar.

We started him on a daily probiotic last month, but does anyone have any other advice on what we could do to help him?

I am still breastfeeding him, and he has always refused milk from a bottle or cup (will drink water fine), so it’s also quite a lot of pressure on me from that side every time he’s ill, as he relies on breastfeeding for the e majority of nutrients due to refusing solids.

Completely lost and feel so sad that he has to suffer so much and so regularly

I had tonsillitis repeatedly until they finally removed aged 14.

When my daughter was that age she was only just started to engage with weaning and was mostly formula fed until 20 months. Don't feel bad for still breastfeeding. When not ill encourage food but when ill anything goes. My daughter has had tonsillitis a couple of times and drops to about 1 grape a day and 3oz of water! You just have to keep an eye on things and be guided by them x

Thank you, sorry to hear you had trouble with tonsils when you were younger too! I had mine out when at primary school so luckily don’t remember.

I am glad you said that about weaning, it can feel like you’re the only one struggling. I know he’s getting some goodness from milk, he usually loves fruit and yoghurt but won’t touch it this time. You must’ve been so worried only having a grape!

It’s just so awful seeing them suffer 😞

Very sorry to hear about your daughter. I was wondering if you had found anything which works for you and if the ENT had recommended a course of action? We are very much in the same boat with my 15 month old daughter. It is always bacterial, it has really impacted her attitude towards solids and it has meant a lot of miserable weeks for her and time off nursery :(.

Hi @CaMac
Sorry to hear your little one is going though this too, it’s awful 😞 my little one has had it 8 times now at 15 months, but 5 since March. Nursery is the worst for it.

We actually went privately through work insurance and saw an ENT consultant last month, who said that his tonsils are grade 4 in size and that they are taking up such a huge part of his throat, that’s why they’re catching everything bug that goes down.

He is booked to have them operated on next month. At his age they won’t remove them completely, but they are doing something called an intercapsular tonsillectomy which she explained basically shaves them right back. There is a 3/1000 chance of them growing back over time, but we will take that chance. I am very nervous for the operation given his age, but it’s having quite a big impact on development overall (doesn’t eat for a week every time, gets deficiencies, misses nursery and hates going back). I’m also terrified of sepsis and am sick of him getting over 40 degree fevers and us ending up at a&e, so on balance know it’s the right thing to do.

So sorry again, it’s absolutely awful to see them suffer like this x

Hi Cdoc,

Apologies on mentioning daughter, I meant to say son! I’m so sorry to hear he has had it so many times. We are currently on our 4th battle since she started nursery in April and I definitely hear you on the trips to A&E. I’m also going to enquire into a private ENT appointment. You mentioned knowing the early signs and I was just wondering if you wouldn’t mind sharing what those have tended to be for him? We are getting better at spotting this but this time around has been slightly different to the usual off food / super dribbly etc.

Wishing your son all the best with his op and hopefully he has seen the last of the tonsillitis :(.

Hi @CaMac
I am so sorry for the delayed response. While not tonsils related we’ve all had Covid and it’s absolutely floored us (DS less so luckily but we’re now getting a canine and going through hell with that!).

don’t worry about mentioning daughter it’s so easily done!

How has your LO been? My son is having his tonsils out Friday and I’m absolutely terrified, but hoping this will be the end of the constant worry of the fevers and hospital trips.

In terms of the early symptoms, we notice that his voice sounds very hoarse (he’s not really talking yet but you can hear it in the babbling sounds). He also tends to develop a dry cough too in the couple of days before the fever kicks in. I also find he actually goes off fluids before he goes off solids. As well as the dribbling, he also chews his fingers terribly, like whole 2/3 fingers in his mouth at once. It’s so hard because so many of the symptoms are so similar to teething, but for us the hoarse voice and the dry cough are a giveaway that we know what’s coming. The last two times he’s also projectile vomited in his sleep, which has been awful (no vomiting in the day).

People hear tonsillitis and think it’s just a sore throat but honestly watching your one year old be in so much pain they can’t even swallow is just awful. Hope your daughter hasn’t had it again recently and is doing a bit better 🤞🏼

Just thought I’d come back and update this for @CaMac and anyone else who might stumble on the post.
DS had his tonsils removed (intracapsular method) on 19th July and I can honestly say it was the best decision! Recovery was difficult but nothing like some of our worst bouts of tonsillitis, he needed back to back pain relief during the day for a week, but this meant he ate and drank relatively well from the day of the operation. The hardest part was keeping him occupied at home.
We were very fortunate and had no bleeding at all and no complications, and he returned to nursery 2.5 weeks after the op. They did comment that the tonsils were absolutely huge, grade 4 and he had very little space in his throat. We are not sure if this meant he was uncomfortable even when he didn’t have tonsillitis, as nursery have actually commented that he seems much more content and confident, which after a month off nursery (and he’s quite shy) was unexpected.
If you do want to explore it privately I would thoroughly recommend the consultant Nneka Eze, she was wonderful and confirmed how carefully she took the operation and how much extra time she took to ensure she was as gentle as possible to avoid the bleeding.

Hi @Cdoc,

Thank you so much for the update and I am so glad to hear that the operation went well and your DS is doing so much better. I’m sure it was a tough time with the recovery but what a relief he is doing so much better now!

We are definitely going to look into booking this in and thank you for the consultant recommendation, I am going to look into her now.

I hope he keeps enjoying nursery and tonsillitis remains a thing of the past!

Glad to hear he’s well @Cdoc

Ive found this thread today after returning to the GP from our 3rd bout in 2 months in a 14 month old. Only had it once before 1. I said to the GP I’ve come earlier than the last two times but I’m fairly certain it’s tonsilitis, showing all the same symptoms as before. He didn’t think it was until he looked in LO mouth and said oh yes it is, doesn’t want to start antibiotics for another 24/48 hours though to see if he’ll get over it himself as conscious of antibiotic resistance.
It’s awful isn’t it, for them and us. I’m already dreading tonight and the hourly wake up screaming in pain, and more time off work.

do you think it’s worth a check with ENT for us? Have private via work but don’t know if being premature with it only being 4 times.

@CaMac thank you. He’s now managed 5 full weeks of nursery illness free, the first time since he started 6 months ago. He’s had a cold but it’s such a relief to not be sat waiting for it to go to his tonsils. Really hope you are getting some illness free time with your daughter, and that she’s doing okay. It’s awful almost sitting and waiting for the next fever/ hospital trip.

@User1213 it probably wouldn’t hurt to see an ENT consultant, even just for the initial consultation, especially if you have private medical with work (that’s how we got seen too). My little one saw countless doctors each time at the GP surgery and hospital and not once did they comment on his tonsils being generally enlarged, just infected. It’s only the ENT consultant that told us how huge they were and all the associated problems that brought (including food and sleep issues so not just infections). I would say if you have the insurance then it’s never any harm in getting checked. GP’s are helpful for the isolated incidents but not necessarily in managing the longer term implications in our experience! It’s absolutely awful, the hours of screaming, the complete stopping of eating and drinking. Awful for them and so so worrying for us. Really hope you manage to get to the bottom of it too

Hello - I hope you don’t mind me asking but wondered how things are now post op?
I could have written your original post myself - our 15mo currently has tonsillitis for the 6th time since Sept 2024 (and 3rd time in 5 weeks). I am so anxious each time of sepsis / invasive strep, not to mention the impact of her essentially not eating for a week, nursery absence, work juggle, antibiotic load, etc.
We saw a private ENT consultant on Friday who has referred to paediatric immunology initially and also prescribed 8 weeks of continuous antibiotics (taken mon / weds / fri unless she has a flare up and then takes 5 days continuous). Although this is obviously not good for her microbiome etc, the advice is the constant tonsillitis is arguably worse.
When we saw the consultant on Friday she had just started with a temp the day before (she’d had about 3 good days, recovered from tonsillitis last weekend from an episode that started earlier that week) and her tonsils were red but over the weekend she’s developed white spots so assume it’s bacterial again. Our GP swabbed on Thursday when the fever came on and we’re waiting for those results.
It feels inevitable that she might have surgery but I’m very worried about her age and putting her through it, although it sounds like it might be for the best.
The consultant did also say that whilst he says a lot of cases, it’s rare to see someone so young (not even 1.5) getting it this often. So thank you for your post!

Hi @SWmum21
Ah I am so sorry you’re in the absolute thick of it too, it was genuinely the most awful and worrying time, particularly with it being bacterial each time and the concerns over such high fevers and sepsis/ further complications. You can probably read from above that that is exactly where we were, not eating for a week (to the point of becoming iron deficient), just getting back on track for 5 days and then being back on antibiotics with yet another bout.

Speaking from experience now though through the other side of the surgery I can honestly say it’s been completely life changing for both us as parents and my son and it was the best thing we did for him. Since having the surgery last July, apart from a sickness bug and a nasty case of hand foot and mouth, the most he has had is a cold, and the highest temperature 37.8! Since Christmas he’s missed one day of nursery due to illness which is so far from where he was this time a year ago. He will get the colds and snotty noses that seem to be inevitable at nursery but it’s worlds apart from the relentless battle with tonsillitis we were having (and that it sounds like you are in the trenches of).

Prior to the op he was given 8 weeks of antibiotics too, but we just couldn’t get them in without him vomiting them (been there too many times before!). I too was very worried about the operation, particularly as he had it at 16 months, but the ENT consultant we had was wonderful (happy to recommend) and the recovery from the op was honestly nowhere near some of our worst tonsillitis experiences. His tonsils were huge and causing other issues (eating/ swallowing) too so all round honestly couldn’t be happier that we went ahead with it. Our consultant mentioned her youngest tonsillectomy patient was an 8 month old baby! So once she told me that, I felt more reassured.

Its absolutely miserable being in the depths of the neverending cycle that you’re in now, so I really do feel for you. Happy to answer any questions you have at all (on here or private message) as this time a year ago it was all consuming and quite traumatic for all of us, so I have been where you are ♥️