Do I go ahead with ENT operation?

[RosiePosey33]

My 3.5 year old has been suffering with a blocked, runny nose and nasal speech since around early September last year. Having had him back and forward to our own GP and getting no where, I decided to go private for a consultation. He was also starting to complain of hearing loss.

I've been told he has bilateral glue ear and grade 3 (one away from the largest) tonsils. The consultant has recommended grommets as well as tonsils and adenoids removed.

She did said the nasal congestion could be linked to allergies so she would do testing while doing the grommets and extraction of adenoids and tonsils.

He was prescribed Piriton and more recently Zirtek to try and also a steroid nasal spray which hasn't made much difference.

My issue is, he's never had tonsillitis, any upper respiratory infection or ear infection for that matter. My only red flag was his nasal speech. His nursery said they wouldn't have noticed if I hadn't pointed it out and other people said he's clear. He was recently seen and immediately discharged by speech and language as they thought he was fine.

He had a hearing test this week and we were told there is a slight impairment but not terrible. But his ear drums are not moving due to the fluid.

The operation itself is costly (around £5000) and I've been told he could require further grommets too.

The NHS wait time in my area is around 2-2.5 year for the operation currently.

I don't want him going to school and he cannot hear sounds or it affects his concentration. His behaviour recently has been terrible- distracted, hyperactive, constantly being told to listen but I read this can all be linked to glue ear.

I know glue ear can clear up on its own but I suspect this is what he has had from the start.

My question is do I go ahead with the operation or wait and see if things improve as he gets older? I feel like the adenoid and tonsil removal is overkill as he's never had any infection but on the other hand I don't want to put him through an operation twice.

My ds had glue ear since birth , only ever had 1 ear infection but his hearing was badly affected. He got hearing aids and 13 month , grommets at 20 months and now and 30 months his speech is amazing. So for that aspect alone I'd reccomend the grommets.
As for the tonsils I can't advise. We've frequent tonsillitis every winter here but I've been told they won't remove them until he's over 3.

@romdowa thanks for this!

His dad also has the same issues and had to get grommets- I feel these will be beneficial but I'm so undecided about the tonsils and adenoids. Other professional I have spoken to such as speech and language and his health visitor both feel his nasal speech is more likely due to large adenoids but obviously you can't see them so it's tricky!

I also had glue ear as an adult - it's miserable missing out on what people are saying to you and your DS is likely experiencing this too.
As for the tonsils and adenoids, it's a far easier thing for young children to have them removed as an adult (I speak from experience as I had my tonsils removed).
I totally understand that you don't want him to go through anything that is unnecessary, but in your shoes I'd do it - as long as you can afford it. If not, ask your private doctor to refer him to the NHS. He won't suffer from not having tonsils and adenoids removed, and in his case, as he's prone to infections (even if you haven't picked it up, the doctor clearly has) it's a sensible course of action.

My brother and brother in law all had glue ear as children and needed multiple sets of grommets , so we are anticipating that this will be the case for us.
If speech and language and ent think removing the adenoids will help then I'd be inclined to do it, better to do it when they are young.

@vipersnest1 thanks for this- it's very helpful to hear an outsiders point of view.

I agree about the infections. When I told his health visitor about the frequent colds and runny nose she said yes but why does he keep picking them up? She feels his adenoids are like sponges and trapping all the viruses instead of fighting them.

I had 3 sets of grommets done, adenoids twice and then my tonsils. The op that fixed my issues was when they removed the tonsils I never got infections but due to how large they were it was squishing all the drainage tubes in my ears causing the glue ear. Something to think about

@ZombieBoob interesting- thanks for this!

Do what you think is best, grommets don't hurt from what I remember with my uncle, my ent for my son (no glue ear, lots of infections, narrow ear cannals, enlarged adenoids no hearing loss, but has a speach delay) has him on the list for grommets but thinks it will clear up on its own as my boy is big he 4 years 4 months and he's in 6-7 clothes

Now your son is 3 its worth if you not sure to go back to your nhs gp and ask for a community ent appointment, if the child is under 3 they get send to a peds ent and that wait list is alot longer, for me the <3 ent took 1.5 yrs with no appointments, 3+ ent 3 weeks ears were cleaned out properly 6 weeks and he's had a ent appointment now we get 3 month reviews with the ent and ears cleaned when needed and no more ear infections for almost a year now

@RareTiger he's been referred to ENT via NHS-it was done in January but they said the earliest he will be seen is November this year. I phoned and confirmed this with the hospital.

He was also referred to Audiology via the NHS about a month ago and we were told the minimum wait is 18 weeks once the referral is accepted.

It's all just taking so long via the NHS despite his age.

@RosiePosey33 my DD has had grommets in and adenoids out in 2 separate operations. Haven't they checked the size of your DS's adenoids? DD had a camera up her nose as part of the consultation we had so you could see how big they were and how much they blocking everything.

Tonsils and adenoids can contribute to glue ear by obstructing drainage. As glue ear can affect learning and development due to hearing impairment I would go for the lot

Grommets and adenoids out if they are speech issues seems sensible, and is what my son had done at age 3 for glue ear related hearing loss. He'd never had ear infections either. Our consultant, who we also saw privately, said she hesitated to take adenoids out in an under 3 because they still played a role in the immune system, but your son is over 3. There is a risk of bleeding from having them out, but even as my son's post operation nurse gave us the warning she said that she'd never had it happen to a patient. The consultant recommended them out because large adenoids can be part of what blocks the Eustachian tube and causes the glue ear, taking them out reduced the chances you'd need a 2nd set of grommets.

I'm surprised at the doctor recommending tonsils out when there hasn't been tonsillitis. The NICE guidelines are clear on how many cases you need to have. My son had (and still has) huge tonsils and has had something like 6 or 7 bouts of tonsillitis between age 2 and 3.5. The consultant was very clear she wouldn't recommend tonsils out without the NICE level of tonsillitis cases, because it's a much riskier operation, the risk of a serious bleed post operation is much higher. It's also a difficult recovery for them. My son is now 4.5 and he is outgrowing the tonsillitis (touch wood the last time was over a year ago) so in his cases leaving them was the right call.

@CrabbyCat I think it was recommended as his tonsils are grade 3 and sir very posterior so when he is sleeping they are partially obstructive his airway.

I’m facing similar with my DS who’s 6. He’s never had tonsillitis, but due to their size it’s recommended that he has them out along with his adenoids as sleep apnea is suspected. Long story on why it’s suspected rather than confirmed, but even without it he meets the criteria for the op.

We’ve personally decided to err on the side of caution and go for the operation rather than the alternative potential solutions for his speech issues.

We’ve been fighting for a diagnosis since my DS was 2 and only managed to get this proper diagnosis by going private. I’ve no idea how I’m going to cover the cost of having the op privately as yet, but I’ll have to figure it out!

@MuchTooTired it's a dilemma isn't it and I think it's shocking the nhs waiting time is so long. It's just setting children up for failure at school.

It really is a dilemma. Personally, I’m struggling with the guilt that I didn’t sort it out earlier, that I’ve allowed my DS to be fobbed off with numerous excuses and blindly allowed my DS to struggle in nursery and school now I know that there’s an actual medical issue rather than ‘just’ a speech issue. The poor lad has been bullied because of it and his confidence is shot to pieces, it’s heartbreaking.

The NHS wait times are ridiculous, especially when all the information on the internet says that the earlier you intervene for it, the better the outcome for the child. Scary really! I’m not necessarily complaining about the NHS (I know it’s at breaking point, the staff are hideously overworked and underpaid etc), but on the flip side it’s hard not to because it’s an easy target for me to blame, and he’s my son.

Good luck deciding whether to go for the surgery or not, which way are you considering going?

I was exactly in your situation, except it was done on the NHS. Absolutely massive tonsils, but she'd never had tonsillitis or ear infections or anything. They suspected the same with her adenoids. She also had glue ear in both ears, which we didn't expect, as her hearing seemed fine.

She had a tonsillectomy, adenoidectomy and bilateral grommets in November last year at the age of 4 and 2 months after having her first appointment way back when she was 2.

Absolutely zero regrets. After she'd recovered, the first couple of days, the way she was acting you would never have known she'd had surgery. Days 3-5 were a bit rough, but once that was over she was fine. Her speech clarity has improved massively, and her hearing is now fine. Little idiosyncrasies (like overreacting to loud sounds) that we attributed to her being a toddler, but were caused by her hearing are gone. She even seems more social, but that might not entirely down to improved speech and hearing.

I should mention that her Dad had the same operation (sans grommets) when he was younger too. Seems congenitally massive tonsils run in the family. They were grade 4, and the sleep study they did confirmed sleep apnea. So it was a problem that wasn't going to go away on its own, and it was going to be years before she would grow out of it. Definitely sleeps sounder, has less runny noses and no snoring too!

Oh god yes get it all done while you can, we did for DS. He might not be getting it now but he could when he's older (tonsillitis only started for me in my teens, much better to get the op done young though).

Hearing impediment in such a young child can cause huge development issues even if not having ear infections- I had glue ear into my teens (for grommets but not the tonsils, oh how I wish I did though, still suffer as an adult). Plus enlarged tonsils mean a higher risk of sleep apnoea.

There's a reason it used to be done routinely as a preventative action, even if that's not the right thing today for your son there will be a lot of benefits.

It's not a pleasant OP but I have ZERO regrets.

Both my kids have had this - DS - grommets, grommets, tonsils and adenoids out plus grommets, needs grommets again...DD grommets, tonsils and adenoids removed at 3 years old...operations all fine, different recoveries - younger the better I would say in my experience but kids are also different. Both my kids would have infection but we wouldn't know until they had a burst eardrum (no temperature but we would suspect due to sleep issues and behaviour). They also would snore/sleep apnea. Do not regret any operations - behaviour and sleep much better post op.

I have lifelong ENT problems and I’ve had my adenoids taken out 3 times. The younger you are, the less it hurts and the easier the recovery so if they’re an issue already I’d recommend getting them done now rather than holding out.

@MuchTooTired we have booked him in for the op in a couple of months.

I don't want things to get worse in terms of his speech and hearing so we are just going for it.

My son has this operation years ago. It really transformed his life for the better.
No more mouth breathing so better for his health
He could hear so that made a huge change.
His Speech improved.
less colds.
So happy we did it.
Lots of ice cream afterwards and he was eating regular food by the end of the day of the operation.