long wait for tonsillectomy - go private?

[Marlus]

My DS(3) has problems with glue ear, his tonsils and adenoids. We had appointment this morning with an ENT specialist, after a five month wait from being referred by a more local ENT doctor. As my son is under 15 kg (he doesn't like to eat, due to the tonsils) our local hospital couldn't remove his adenoids, tonsils and put in grommets as everyone, which everyone has agreed he needs. We thought the wait we have just had would be it (it felt long enough!) but have now been told that it will be another 8 or 9 months (!) although they will try to get him seen sooner due to his sleep apnoea. His hearing is affected, as is his eating and sleeping, and I feel this issue might well be shaping how he is interacting with others at nursery (minimally) because he cannot follow what is going on. Would you consider going private in this situation? We have no private insurance and have never considered this before, but more than half a year is a long time to wait...

My son had a tonsillectomy a few weeks ago and currently has tonsillitis. I wish I'd read that article beforehand.

A few facts

1. Most children with sleep apnoea get better with time
   Please don't take my word for it but check the link to the review of the scientific evidence.
   Review

2. The vast majority of children who consult their GPs with sleep apnoea do not have surgery
   BJGP
   This is also on the Wikipedia page
   Tonsillectomy

Conflict of Interest: I am the author of the paper mentioned in 2).

I don't get paid to do tonsillectomies or paid to persuade people not to have tonsillectomies. That may not be the case for everyone who advises you.

I waited 3-4 years for my son to have adenoids removed and grommets in, after years of ear aches, he fell behind massively at school and they placed him on the SEN register! Which was annoying as he was very bright but couldn't hear the teacher on reflection we should have gone private..

we were advised to wait

poor dd had massive tonsils, suffered all the way through her childhood. She's asthmatic too, has GERD. She got tonsil stones, repeated tonsillitis all the way through her life.

Eventually, age 17, I took her to a private ENT who took one look at her tonsils and said it was the quickest and easiest decision to operate on anyone he had taken that year (he also works in the NHS and said she would have gone on his list had she had a referral to him). Her tonsils were severely pitted (from all the repeated infections) and were enormous, considering the size of her mouth/throat. Doing the op when she was older I think was worse than doing it when she was younger.

It was a horrible op, her tonsils were so large, it left a big hole where they were and he said it took longer than the average tonsillectomy. She suffered terribly for 2 weeks afterwards but since then, her health has improved dramatically.

Her last year at school she had 72% attendance due to tonsillitis. Since the op, she has not had one throat infection and it's more than a year now.

I regret not doing it sooner and when she was little! I actually look back and don't know what on earth we were waiting for. It is like having a different child, that's how incredible the impact on her health has been.

btw she also had glue ear. We paid to go private after the GP fobbed us off. Turned out she was completely deaf in one ear!

marshatp

It looks if that Cochrane review has been removed because it's been split into two separate reviews, the relevant one of which is, I think, this? www.ncbi.nlm.nih.gov/m/pubmed/26465274/

Is that right?

If so, what you're saying about "most children" getting better with time doesn't quite seem to reflect it correctly - it says just under half in the conclusion here.

It also states that there's

"moderate quality evidence that adenotonsillectomy provides benefit in terms of quality of life, symptoms and behaviour as rated by caregivers"

And....

"high quality evidence that this procedure is beneficial in terms of polysomnography parameters"

However, it also states that;
"At the same time, high quality evidence indicates no benefit in terms of objective measures of attention and neurocognitive performance compared with watchful waiting"

That looks like quite a mixed picture re success, compared with what you've stated.

The review also specifically states that it can't comment on the benefits for UNDER 5s, like the OP's kid. So am I right that the most up to date Cochrane review doesn't cover this age group?

I'm not an expert by any means, but this does look to me as though the evidence is far more nuanced than you've communicated (and I suppose might explain GP referrals for what your paper described as non-indicated problems).

V happy to stand corrected if I've got that wrong.

Ps OP, sorry for sidetracking - we paid to go private age 6, after much watchful waiting and a child with immense difficulty controlling himself and unable to even walk to school as he was so exhausted. It was the game changer everyone had told me it would be. I wholeheartedly wish we'd done it sooner.

We went private for my son 4 months before he turned 3 as our local NHS hospital/ consultant was utterly, utterly useless. It was £2000 all in (with The Spire , Southampton I think). Best money we have ever spent. My son out in 7lb in 7 weeks and people could actually understnad what he was saying! He also started sleeping through the night. Good luck OP!