Private ENT for 16 mo old worth it?

[Maccapaccawacca]

ds is 16 mo. Has moderate-severe hearing loss due to glue ear. Doesn't speak at all.
That was enough of a concern but now he has had 3 bi-lateral ear infections in 6 weeks. Been v unwell. One ear drum has ruptured.
Saw audiologist yesterday and now waiting for ENT appt to come through.
Basically I'm so fed up of seeing him so unwell I'm thinking of going private. I would sell a kidney right now to see him get better. He's not thriving at all. Sick of giving him endless antibiotics that don't work. Sick of endless bottles of calpol. Sick of cancelling days out.
Sorry for rant and bad typing but doing it one handed as feverish boy asleep on me.

If you can afford it its worth a go. Once he gets seen by ENT things might speed up? Did they say how long it would take for appt to come through?

No audiologist said she didn't have a clue how long ENT would take, I'm just so fed up and feel powerless it seems like throwing money at it is the only thing I can do.
Can't really afford it but I'd happily empty my ISA

Can you phone up the local department and ask for cancellations, ro how log they'd be. With ds (who saw ENT at about that age) I think our first appointment was within 6 weeks, and then grommets were in within the month. (The second time he needed grommets they were in 2 days later!)

You may find if you go private for a consultation, any treatment also is private, so you need to factor that in.

Ds had ear infections every 10-14 days from age about 10 weeks onwards untill grommets were in at 20 months. However he had a summer break between about May and September. You may find that any ENT wants to leave it until next winter, they tried that one with me when he needed the second one-he had 8 ear drum perforations in about 2 months. They put grommets in, but only when my GP insisted I saw the consultant.

I would go private. We did with ds1 and we had grommets fitted. If he gets repeated ear infections also push for them to check to see if his adenoids are enlarged. Ds didn't have these taken out until 2 years later and we are only now seeing his speech improve. Best of luck, it's very hard to see them suffer and struggle.

You poor love, its a nightmare isn't it

We ended up getting a one-off private appointment with dd's NHS consultant (who also worked privately) as we just could not get past the system to get her seen any quicker than 3-4 months on the NHS. She was losing weight and going backwards, aged 23 months, due to huge tonsils and adenoids - literally choking on her own tonsils, and unable to deal with snotty colds due to severe sleep apnoea.

The consultant was horrified that we'd not been able to access him/help quicker, and immediately put dd on his NHS operations list - so in our case, we only had to have the one private appointment. Not sure it would work like that in all cases, though (she was already on his list - not a new patient - as she had a floppy larynx from birth).

Whatever you decide, good luck...and hope the weather improves so that there are less infections around, while you wait. xxx

Thank you all.
Horrid day today watching him clearly in agony and feeling so utterly powerless. Totally at a loss if calpol, nurofen, cuddles and a chocolate finger don't help.
Will wait and see how long appt will be I think and say my prayers in the meantime.

Have you tried him on a dairy free diet?

DS1 had exact same issue - grommets were useless. Saw an audiologist after noting the DS did not startle at a very loud noise, audiologist suggested a dairy free diet, et voila....symptoms cleared within weeks. Maybe worth a go?

We are in a similar position
We paid for one private consultation 190 (central London) and we are now on the list for NHs grommets

My dd is 16 months and still has no language it is heartbreaking to see them in pain

I have heard dairy mentioned before. The audiologist mentioned it offhandedly yesterday which I am surprised at as there is no robust evidence to support it. I mentioned this fact and she said that in fairness they do have to be having 'excessive' levels of dairy for it to matter. She couldn't quantify what excessive would be. That sounds like I was being stroppy, which I wasn't!
I'm reluctant as I think dairy foods are very nutritious for the little ones. But, in fairness, I'm getting to the point where I'd run naked through the streets if it'd help.

maccapaccawacca, all I can say is that we knew it was the cause within 3 weeks of dairy free diet. His ears were finally clear for the first time and he was a smiley happy boy.

However, there was strong evidence of dairy allergy - his symptoms started soon after I started to wean him, I had been intolerant of all dairy during pregnancy, he was clearly atopic - strong reaction to egg, had hives and eczema.

Try it for a short while.

I'd second finding out ENT consultants secretarys number and finding out what the waiting time is, it will be an appointment before you get to next stage of waiting list for grommets.
This NICE guidelines for surgical management of Glue Ear may help - it does say about waiting times.

Our ds1 went through NHS - ridiculous long wait (just over a year) which I think serverly affected his start to school. ds2 private app with ENT one week, grommets the following week. ds3 straight to private ENT then had to go on waiting list for NHS as he was under 3 yrs and was told private hospital will only do over 3 years as under than needs specialist paeds team. Was a 6 week wait. ds2 had to have second set, went privately and wait was same as NHS due to consultants holday. Same consultant for all 3 boys.

I have to add we had healthcare cover with BUPA so I've never had to worry about the cost.

If your dd has no language then make sure consulant or GP or secretary or clinic know this, is she seeing SALT? can your HV help with a report? this will all help you get seen quicker - SALT and HV reviews helped consultant make decision to give him grommets without 'active waiting'

In meantime if he has had lots of antibiotics give him a probiotic to build up his immune system. Also try asking for ear drops not oral (unless you already are) get ones that go to site of infection not that wipe out gut. I'd also say dairy free - I know there is no formal evidence but we've done it for all 3. The amount of outpatients appointments, SALT, school appointments, nursery reviews is over whelming, I will do anything that has a chance, no idea if it works only been doing it a few months only that ds2 who consultant had enlarged andenoids and tonsils now doesn't and he doesn't snore.

I had to fight tooth and nail to get grommets for my DS who had glue ear from 9mo to 24mo. During that period he had something like 15 separate ear infection diagnoses and at one point was on antibiotics literally every day for a year. Absolutely relentless and hideous but NHS were refusing to take action because a) he was under 2 and b) his hearing was intermittant - sometimes it was fine (ie, when there was no glue) but their rules say it must be constant hearing impairment. Like your DS he had no speech.

I had a total meltdown and eventually got the grommets op when my DS was 22 mo and it has been like turning a switch. He suddenly could hear, talk and wasn't screaming in pain all the time. He hasn't had antibiotics in over a year.

So yes I would go private if you can. if you don't meet the annoying criteria you won't get the Op unless you fight. But it's really worthwhile.

It's so fantastic to read all this, even if a lot of it is saddening that we have to fight so much, just to get our children out of pain.

Incywincy - we are under care of audiologist at present, who has referred us to ENT. HV was the one who picked up the lack of speech & hearing - do you think we need to be seeing someone else SALT related? The only advice i've had is to keep ears dry at bathtime and to speak loudly & clearly, preferably face-to-face.

I got referred to a SALT by the ENT consultant. By the time we had our appointment my son had had his grommets for six months and had gone from saying nothing to being spot on in terms of language development for his age. But I'm still glad we had the appointment so I knew he had caught up.

Coincidentally we had our six month checkup at the hospital today to check on hearing and check that the grommets are still in place (almost one year after the op). All good. This has really turned things around for us - no pain, no antibiotics, no speech delay. I would hate to think where we would be if he hadn't had the op. So I guess I'm encouraging you to take this further!

Thank you treefu, I am very motivated to get him sorted out. 3 infections in 6 weeks is not normal, under any circumstances if you ask me, and although his hearing has improved slightly since his ear drum ruptured, it is still sub-optimal. He still doesn't hear a lot of low level stuff, including conversation. So it is little wonder he doesn't say anything.
I guess I have to wait and see what the ENT chap says....and pray for not too many temperatures, antiobiotics and sleepless nights in the mean time.
HOw old was your son when he had grommets?

poor you with the infections. I remember those nights (from hell)!. My son had a year of infection, literally constantly. We had antibiotics on repeat for 12 months. He had grommets at 22 mo and have not looked back.

BTW if you haven't had augmentin, it's much better than the standard anti-b. In the end we just had augmentin all the time - nothing else really worked. It was trial and error but I soon worked out that the standard 7 day prescription didn't work and sometimes neither did the 10 day prescription so we kept upping the prescription until we ended up with Augmentin on a 28 day cycle.

Sorry treefu - you had already mentioned his age.

It's hellish isn't it.Keep thinking how awful ear ache is for adults, let alone the little ones. Especially when they are too young to cheer up with treats or DVDs etc.

We are just coming to the end of a course of abs, and i'm tempted to take him to GPs as they finish so they can have a look in his ears (AGAIN),as I don't feel sure his ears are infection-free between these courses. I need a reward card for the GP,could get a new set of wine glasses or something at this rate

I can recommend a great ENT man. Mr Albert in London, fantastic.

When 6 other GPs had failed in diagnosing and helping, a paediatrician recommended Mr Albert. We saw him and things were dealt with brilliantly. In the end he had grommets, and the moment he woke up from the op, we've never had another problem.

www.albert.uk.com

Can I also add that if you are seeing a private ENT then get them to look at Tonsils/Adenoids as well. DS1 had severe glue ear when he was small and had no speech at all at 2.5...nhs ent said to wait until he was 7 and it would be better! So we used DH's medical insurance and saw one privately and he said that his adenoids were most likely huge(he sounded very nasal as well) and it was probably those that were causing the glue ear...something to do with them not allowing the drainage from the tubes and therefore causing the glue ear so he decided to take out his tonsils/adenoids rather than inserting grommits (his opinion was grommits can sometimes fail and need replacing whereas once the cause of the glue ear has gone then the speech/hearing should improve).

Yes it was a bigger op than just grommits but he was absolutely fine afterwards and it was like a switch being put on over night...he had no more ear infections and was talking properly within a few weeks.

Fast forward 5 years and we now have DS2. He has had quite severe Stridor (which is a loud noise he makes when he breathes in-bit like Darth Vader) ever since he was 6 months old (He's 17 months now). ENT originally thought it was Laryngomalacia but they also found he had a random artery coming from his heart and going near his ososphagus so we've had loads of tests done at GOSH to make sure thats not affecting his breathing and he had a camera down his throat to rule out Laryngomalacia which is isn't apparently. He also has constant ear infections-he's had 12 lots of AB's so far-we were averaging one course a month until a few months ago when GP tried Augmentin and he hasn't had once since. ENT are now thinking it might be tonsils/adenoids causing breathing issues and ear issues so we need to decide what we are going to do!

Apologies for the essay!

Were you insured bluesky?

yes we were insured, but you can call and ask what the specific charges are, even just for a consultation, his secretary Bernie is really nice.