To push for this surgery for my son?

[Threelittleducks]

Right good people, I have a fight on my hands and I am hoping you can help.

My 4 year old DS is in hospital atm, been admitted after being really ill with swollen tonsils.

A quick recap:

He has glue ear. Been at ENT for about a year for glue ear - previously seen to be getting better as per the 6 monthly hearing tests (discussion was with a consultant who does not favour the surgery route with grommets, thus the idea was to hope he grew out of the ear thing, as showed slight progress). He has since over the last three months been ill with ear infections (severe runny ear) treated with three courses of differing strengths of antibiotics (stronger each time). His latest is completing in the next two days (10 day course). His ear is much better (although still very much glue ear, but as good as it gets for him) but his throat is awful - massive tonsils and he is struggling to eat or drink. In hindsight (and now we are actually focusing on tonsils rather than huge, wet, drippy, ear) he has also been struggling with tonsils for a while, it's just we have always been treating the obviously dripping with pus and sore ear. His ear infections are always crazy bad, so we don't have a choice!
In hindsight (and this is the crux of the situation) he has been having trouble with his nasal stuff and tonsils too.

Now, all the docs I have seen in the last few days agree, the boy needs his tonsils and adenoids out. I agree, and would definitely push to have grommets too. It would improve DS's quality of life immensely, and I feel really awful and guilty for not having linked all this before now.

However, the consultant thinks if he gives him yet another 6 week course of antibiotics (which I am really not keen on after giving him so much already) that we can avoid surgery. The doc I saw on ward today says that they have to follow this protocol because of the risks involved with the surgery - obviously I am not taking them lightly. However, I feel he is just fobbing us off.

AIBU therefore to push for the surgery rather than let the consultant tick his boxes?
All I can see is my wee boy who has been ridiculously ill for a while now and us all having dropped the balls on the tonsils front and him suffering as a result. He hasn't eaten properly for about 4 days now and is barely eating or drinking due to this. Not to mention all the time spent going to GPs, time off nursery etc. It's been going on for months. How the hell do I get them to take him for the surgery I really think he needs? Do I even have a say? Am I putting my boy unnecessarily at risk?

I really do feel that his life would be changed by this. How do I communicate it to the consultant in the morning?

I would be reluctant to subject a child to GA and surgery when you haven't actually exhausted medical options. I would suggest that you say to the medical team that you will go with their plan BUT if he relapses again you expect to proceed to a surgical route.

Think you will have to go with the ab's as unless you pay privately how on earth will you get the cons to change his mind?

I was told the same thing of basically wait and see, as ds hearing fluctuated as to how bad it was and in what ear. Then when he turned 5 he was suddenly put forward for grommets, it was like they had an no under 5s rule ( I have no idea if that's true or not). The op was simple and straight forward however a year on his hearing is still poor and his ear regularly drips. So it's certainly not a magic cure. However if you feel your ds would benefit you have to really push for it.

I do feel in my gut that pushing for it is the right thing, but I suppose I am trying to get a feel for whether |I am the crazy mother or not. It's so hard after you have spent the best part of 2 days telling medical folk your story over and over again. It always feels as if each person has a different idea of what to do based on their own area of expertise iyswim?

GP pushed for ENT referral, GP bay tested for glandular fever and infection markers and nodes, ENT doc one said his tonsils need to come out, ENT consultant says no, doc on ward says tonsils out, one consultant made him have a bloody sleep study last night (after giving him a steroid) to check 02 saturation levels,another one has given him a throat spray...frustrating. The antibiotic he is currently on is stupidly strong even for adults. It stripped the lining off my DM's bowel when she had it and it's side-effects are horrific - poor wee Ds been suffering sore stomach and nausea on top of all this for days now because of it. And that's after being on two previous rounds of antibiotics. I just want it to be over! And if they are going to end up on the surgical route, just to bloody do it without putting him through 6 more damned weeks of antibiotics again! Bloody shame! He has lost so much weight too. He is a big lad for his age, but he is so skinny just now, it's upsetting.

I'd push for a second opinion on this one...the rate of ENT ops varies greatly between NHS trusts, and the consultant I saw for both DS and DD was of the opinion that operating early was better as the speech issues created during delays can't always be reversed.

At the very least, I'd ask for him to be booked for surgery for 6 weeks time, which can be cancelled if the abs work. I'd also push for written confirmation of what exactly are the indicators for surgery...and exactly what improvements are being expected from the abs.

Don't beat yourself up about missing the tonsils thing...my DS spent 5 years being bounced from hearing tests to Speech and Language and back again, before anyone clicked that the issue was that his tonsils were the size of ping pong balls .

Also, I am so fucking tired, Poor DS is miserable in hospital and so just wants to come home, but won't eat anything. They won't let him go until he eats. I've never seen him refuse food - normally he'd take your hand off!

Right. Ds has glue ear, and has had it since a baby. Continuous infections from 3 months to 20 months when the first set of grommets went in.

The second set of grommets the story went along the lines of:
Seen by ENT registrar. They decided he could wait and see about 2nd set of grommets. For the reason that it was nearly summer (January!!) when glue ear is typically better, so they'd see him in August...
Felt initially relieved at avoiding surgery... then he had 8 ear drum perforations in as many weeks. GP (very experienced) said to me "are you happy about not having grommets?" so I said not totally. He wrote a personal letter to the consultant requesting he personally saw him.
I got an appointment about a fortnight later. I wrote a list of why I felt he needed grommets.
So I went in, and started on my list: I said "He'll be starting school in September, and his behaviour deteriorates when he can't hear..."
Consultant stopped me there, signed the form and he had grommets two days later!

My lists were:

1. School in September.
2. Behaviour deteriorates when he can't hear
3. He'd missed a lot of preschool (whole of February) due to ear infections. Don't want him missing school
4. He had speech pronunciation problems and was under SALT
5. His ear drum was bursting with every infection so was causing damage anyway
6. It was effecting him socially and academically as he couldn't hear.

Talking with the consultant after the grommet operation, he said that any one of those was a reason to consider grommets except possibly 5, and two of those he would definitely want to use grommets unless there were other issues.

I would see if preschool (if he's in one) can write you a letter stating that his lack of hearing is effecting him socially/academically at preschool. If he has speech pronunciation issues, ask for him to be put on speech therepy list. Write down how much absence he's had from preschool this year (or would have) and point out he's at school in September.

Yes GA has its risks but once you are aware of these and weigh benefit and stll want to for it do.

Personally there seems to be a silly amount of intervention going to to prevent surgery.

Though I am prejudiced, I had my tonsils out at 21. Once I got over the post op pain it was amazing. I never realised the amount of pain I had been in till it was gone.

I asked the ward doc today what he would do and he broke his bedside manner and went into a huge spiel about how he wished he'd had his out and so on...

I think I am going with my gut on this one.

Loving the list idea DeWe! Thank you!

I'm going to go against the majority here, and not likely I can assure you.

As previous poster said, get a second opinion.

Seems to me your ds is suffering way beyond what I would personally tolerate. My ds had grommets fitted in nov last year and didn't have to go through half the faff you are.

Your ds is suffering. Daily.
Operation for grommets takes literally 20 minutes.
I would push for grommets rather than waiting for 'summer'. I admit ds hearing did improve in summer but worsened again. 'Summer' is not a cure.

IMO grommets at least is worth a 'try'. I wouldn't have ds suffering as yours seems to be. It's easy for them to say lets wait and see and try xyz. But it's you ds that has to go through with it. I understand they are obvs medically trained and can see the bigger picture bit if he's in hospital at the mo then it's really not on that he has to put up with this much discomfort and pain.

Second opinion for me. Push for grommets. Can't get worse can it?

Yes Mountain!!!

This is the kind of stuff I need (what I was hoping for!)
Yes!

Now, if I can just channel this tomorrow morning when I have to talk to consultant again...

He is very 'nice' and doesn't allow for challenges. But I will. Oh yes, I will!

Have to say grommets has worked quite well for us in one ear but not the other.

So it's not a cure. But hearing has improved immensely. I can't comment on tonsils and adenoids as although I've had mine out (at 5) my dc hasn't had to have them removed. Although tonsils are certainly large for my dc.

But your ds is suffering and it's really not fair. Hope it gets solved quickly for you and your ds.

Tonsils have a nasty habit of growing back in a significant number of cases.

Just talking to a friend now who says that they get lanced and not dissected at his age, so have a chance of becoming re-infected. But surely better in the long run to minimize risk of infection/ discomfort etc?

As mountains said grommets are not always the miracle we expect. If I could go back in time I would not let my DS2 have had grommets. It was a mistake. Six sets later, two sets of permavent style grommets and his ears are permanently infected still and very damaged. I'd carefully consider the six week course of abs. What have they suggested? Has anyone spoken to you about hearing aids at all?

Conversely he did very well after having his tonsils out after several hospitalisations with severe tonsillitis. If they did the sleep study and that was normal then that is at least good news. I really do sympathise having a poorly child in hospital is thoroughly miserable, it is made worse when the doctors & consultants don't agree. Very, very frustrating for you.

My son had glue ear which caused a severe articulation disorder and constant bouts of tonsillitis. My doctor here in Australia said the the tonsil operation was unpleasant and had risks and that an operation was considered after 6 infections in a year. My son had 5 infections. He didn't have the operation and has grown out of the illnesses. (He did have an operation at 4 for umbilical hernia and at 10 is now struggling with UTIs and is taking an antibiotic everyday for a year).

My thoughts at the moment are not whether your son should have the operation at all, but is it the right time for the operation now? If his body is under stress and his tonsils are enlarged and infected would this compromise the success of the operation and his recovery time. Would he be better off having the operation after the 6 weeks of antibiotic treatment?

He's going to have to have the anti bs though because I don't think they will operate if there is infection present.

I'd give it the 6 weeks and then see.

There was a tv programme on recently where they showed somebody having their tonsils zapped by laser rather than surgically removed. Looked and sounded much less risky than standard surgery...

He really needs to have the infection cleared first as there is a big risk of bleeding and other complications if tonsils are taken out when they're infected. Also, hospital politics being as they are, it's not always that easy to list someone for a routine procedure when they're in with an acute illness. Best thing to do, and what I would recommend if you were my patient in this situation, is to complete the antibiotics, get a GP appointment as soon as you're discharged and ask for an ENT referral to discuss tonsillectomy - this means you can discuss things when you're less knackered and stressed having been in hospital and the ENT surgeon will know and accpet you're there to discuss tonsillectomy so will be open to the discussion
The sleep study will be very helpful as will demonstrate if his tonsils being big affects how he breathes at night, that by itself is an indicacation for tonsillectomy.

Honestly if I were you I would be considering these points:-

1. 80% of kids with grommits need a second set within a year.
2. He is very young, so the glue ear canal is still very straight and will tilt (which is why adults rarely get infected)
3. It is unlikely they will remove with an active infection so there will be a wait anyway.
4. Consider his current speech and whether it is/isnt delayed
5. Are you looking for tonsils out or grommits, as one alone may solve the other but infections can occur.
6. Tonsill removal can lead to more upper chest infections.
7. He is still unwell and I would want him at full strenth before an op.

Honestly if I was you I would talk to the consultant and agree this plan of action - discharge with six week anti-biotic and a clinic review at the six weeks to discuss further action. If no improvment list for surgery straight off.

Too me that gives ur dc the best of both options

Ds had grommits at 1y and was a real turning point for us. He is doing great with them (2.5y now). Surgery was very straightforward and we have 6m checkups where the surgeon takes out any excess wax. Grommits still in place and we are so happy we pushed for it.

ds had grommets recommended because of recurrent infections/perforations but we resisted for two reasons. Firstly ds had no associated hearing problems and we were advised he'd probably grow out of the problems. Secondly we knew it would present problems in terms of swimming - with grommets even jumping into water can cause pain - I think the pressure can cause pain from as little as 1 ft below the surface, so diving and some swimming (eg turns) probably not possible.

Ds did grow out of his problems, although mild ear pain still accompanies most coughs and colds.

Fwiw, in some EU countries (Denmark and Netherlands I think, may be others) ABs for ear infections considered pointless and instead they just open ear and drain it, or tell parents to let it burst by itself.

I can comment n the tonsils stuff.

I had tonsillitis monthly when I was younger. I saw ENTs etc many, many times and they all kept saying I would grow out of it. I didn't. I missed weeks and weeks of school, a good number of special events (my own confirmation for example) and took more antibiotics than I care to remember. In the end after nearly twenty years of this, I had them taken out at university. I haven't had a single problem since then and it makes me really angry that I went through my childhood like this because of the 'avoid surgery at all costs mentality'.

In your position, I would be pushing really hard to get them removed. Goo luck.

I wouldn't risk a GA for an elective procedure while he was acutely unwell with tonsillitis. Get him over this, take the antibiotics, see what the sleep study showed and in 6-8 weeks when it's settled down think about the surgical option. If he's having a GA for tonsils/adenoids it's only another 10 mins to do grommets and lots of kids have all 3 at the same time.

FWIW, I'd refuse to anaesthetise him with a severe infection unless his life depended on it.