Tonsils out for baby (UK private)

[buggybum]

So we are UK based. I originally thought my 12 month old may have a tongue tie that was causing his issues with eating. He gags severely on all solid foods and often vomits. No appetite, won’t even eat completely smooth foods. He survives on only breastmilk. We’ve seen the GP and his weight has dropped off his centiles. We’ve been referred to speech and language. He also mouth breathes constantly and snores really badly when sleeping. I think he has sleep apnoea as he often stops breathing for a few seconds at night and suddenly starts again.

We’ve seen a Maxillofacial surgeon (private) for a consultation and he said there is no tongue tie or palate issues, but that baby has extremely large tonsils with hardly any space between them. He advised that we see an ENT. Contacted GP and they said they will refer us but that the waiting list is very long and the NHS are unlikely to do anything.

Does anyone have any experience of going private for a tonsillectomy in the UK for a baby of this age? I know it’s much more common on older children, but I’m not ok with just waiting around when he’s being so badly affected. Any experiences or advice would be really appreciated.

That sounds very scary, surely if it affects his breathing it should be treated as an emergency? No experience but something else to ask about would be Montelukast which widens the windpipe (an asthma medication). Maybe he will "grow into" his tonsils? I would be getting done privately asap though.

My son had this, it took till he was 2 to get a sleep study (despite being admitted for low o2 3 months before). The sleep study said he did indeed need his tonsils out due to severe obstructive sleep apnea but as he had a fever they wanted to wait until he was better. But 5 days after the study, he ended up having to be ventilated for a few days as he couldn't breath past them and almost died and was in hospital for about 3 weeks in total costing the NHS oodles of money as they didnt give him a tonsillectomy soon enough which would have been 1 overnight stay. The earliest ive heard of the NHS doing a tonsilectemy is about 18m as the parents were doctors themselves.

So if you can afford it then its a better idea to organise it yourself rather than to let the NHS wait. After my son was off the ventilator he had a tube down his nose to keep his airway open and because of that he was no longer classed as an 'emergency' so we really had to keep pushing for them to book him in a couple of weeks after.

Hi Op, I could have written this, and going back last year there’s a few posts I made on this.

I first noticed severe gagging and vomiting on any textured food when he was about 10 months old. We also received a speech and language referral as well as allergy testing on the nhs when he turned one and a sleep study to rule out apnea. He also had a stomach ultrasound to rule out any blockage. Alongside this by the time he was 16 months old, he’d had tonsillitis 9 times, the first time being when he was just 5 months old, several hospital admissions and 9 courses of antibiotics which were ruining his gut and immune system.

We received an nhs referral to ENT but the wait for an appointment was over a year and we couldn't keep spending every other weekend in a&e alongside the countless antibiotics. We had a private ENT consultant on 2 May and my son’s tonsils were removed in July when he was 17 months. Absolutely wonderful consultant, said she couldn’t believe how enormous his tonsils were (grade 4) and that they were almost definitely the reason for all his vomiting issues etc.

The operation was as I said July last year and I cannot believe how life changing it’s been for us. There are still some food textures he doesn’t enjoy,and his gag reflex is still a little more sensitive than others (he also had horrendous reflux as a baby) but it was honestly the best thing we’ve ever done. Not sure which area of the country you are in but happy to recommend the consultant, we are South East based but had the surgery at the Portland in London due to his age (she told us due to the age based risks, the surgery had to be done in a hospital that has a paediatric ICU onsite, which many private hospitals don’t).

It was such a worrying time so I can massively empathise with what you are going through, and as scary as the surgery was, it was without a doubt the best thing for our son. The consultant said the youngest tonsillectomy patient she ever had was 8 months old, so very experienced in young children!

@CdocHi, thanks for much for this reply! We’re in Yorkshire but I’m willing to travel if it means helping my boy. I’d be really grateful if you could recommend the consultant! Thanks so much

No problem at all, it was Miss Nneka Eze and took place at the Portland in London. She mentioned how carefully she took the surgery and spent longer than she would on older patients and it was definitely reflected in how smooth his recovery was, not even close to as bad as some of the worst bouts of tonsillitis. He was given preventative antibiotics as part of the recovery and we were told to give pain relief round the clock for 7 days, but he didn’t actually even need it during the night. He is also breastfed and was relying massively on milk too to top up the food he wasn’t able to tolerate, so it’s strange how similar our situations are.

Absolutely life changing and he now never vomits on food at all.

Wishing you all the best OP and hope you managed to get booked in soon for your son, it’s the most stressful time to see your child struggle with something so simple as eating

@Cdocthank you so much. Might just be exhausted but your replies have made me a bit emotional. Really appreciate it!

Completely understand, it’s unbelievably emotional when you’re in it, but honestly I don’t think you’ll regret it at all.

It’s funny I was just saying to a friend last week, as DS recently turned 2 as did many of his friends, how lovely it was to go to children’s birthday parties and he could actually eat food other children were. This time last year when it was the first birthday parties, I had to bring my own yoghurts and melty puff sticks (or just breastfeed) as he couldn’t tolerate any of the food that his friends could.

Keep us updated with how you get on, and if you do manage to get him booked, more than happy to answer any questions in the lead up or recovery period!

Dd had a private ENT op recently and it eas noticeable that the average age of the children was significantly younger than those on an equivalent NHS list. We went to our local Spire hospital and we're very impressed - pre op appointments locally and then they've centralised the surgery centres for paeds into a few across the country, however we felt that this gave us a team of people who were so great with dd. Sadly.i'd not trust the NHS with much at the moment.

@KnickerlessFlanneldo you mind me asking how old your child was for the op? I’ve asked at my local Spire about minimum age and waiting for them to get back to me.

My DS was 4 when he had his tonsils removed, he also had obstructive sleep apnea, it took 6 weeks from referral to surgery, although that was 6 years ago now.

My just two year old had his out a month before his 2nd birthday due to sleep apnea. Think the wait time was about 3 months. This was in December. Deffo worth getting the ball rolling with nhs and seeing how that goes if you can't afford private

DD’s tonsils and adenoids were removed by Mr Hamid Days of ent4kids here - London based sorry. I don’t know what age he would operate on but I expect you could get an answer to this by email without you having to book and pay for a consultation.

My son had his adenoids removed at the Portland by Ms Rachmanidou: https://www.hcahealthcare.co.uk/finder/stepconsultantprofile/ms-anastasia-rachmanidou. I think he was about 6 when we had it done as it was affecting his breathing/eating.

The whole experience was excellent. He recovered really quickly and had minimal pain afterwards. There was a very high staff:patient ratio, and I was able to be with his and hold his hand when they put him under. I was then also able to be with him when he came round.

I had no idea big tonsils could cause vomiting, food issues. This is a revelation. Ds was a nightmare baby for vomiting all the time, day and night. He didn't start solids until almost 2. He was diagnosed eventually with cmpa and reflux, no one ever checked his throat. He's 6 now, has had tonsillitis 40+ times since age 3, scarlet fever, strep a 8 times, disturbed sleep (only just started sleeping through and dropped his fortified overnight milk). We've just seen the nhs consult who has agreed to remove his tonsils in the next few months. I'm so shocked this has never come up as a potential cause in what must be days of research over the years. Thanks @buggybum .

I looked into private tonsillectomy a couple of years ago but chickened out due to the small complication rate with bleeds, thus the need to do it in a proper hospital with emergency care. Our case is also complicated by extreme motion sickness. We can push ds back from our local hospital in a bike easily enough (takes about an hour, we seem to do this frequently for ds who is a magnet for weird accidents and ailments) but we can't go further afield for a throat operation and have him vomit all the way home.

I wouldn’t be surprised if the tonsils and adenoids are contributing to the motion sickness too Bippity

@Bippityboppitybooowow I’m so sorry it was never addressed sooner!

Mine was 4 but she was the second oldest there (as they operate from youngest to oldest)

@minipie Their dad, ds6 and dd3 all can last 5 minutes tops in a car, bus or boat. Dp can't even manage a plane ride, although motion sickness meds seem to actually work for him at least. I'd never heard of plane sickness before! So alas, I doubt the motion sickness will be fixed!