to delay my daughter's operation while I look into the options?

[Runoutofideas]

Hi,
This is a genuine question as I really don't know what to do for the best. DD1 (4) has just been diagnosed with glue ear and the specialist has recommended grommets and adenoids out which will involve a general anaesthetic. I took her initially to the GP as I didn't think her hearing was 100% and she permanently sounds quite nasal, but her speech and language development luckily does not seem to be affected particulary. Her pre-school teacher was shocked when I told them the recommendation as she said she hadn;t noticed there was a problem, and was talking about dd1's fantastic vocabulary and sentence structure etc. I have been researching online and found that for some people cranial osteopathy has helped and also herbal remedies for shrinking the adenoids. Am I being unreasonable for trying these first rather than rushing into an operation which may not be entirely necessary...? If anyone has experience of grommets I'd love to hear from you.

I should add that we have private health insurance through my husband's job so waiting lists fortunately aren't too much of an issue.

The first lot made her worse btw, nothing to do with the mistake made by the hospital as it happened before that.

My Ds 2.11 had his Tonsils & Adenoids out in May due to severe sleep apnoea, he also had glue ear for which the surgeon was considering grommets.He decided not to do the grommets as he said the removal of the adenoids should hopefully unblock the tubes needed for drainage. We shall see whether it worked when he goes for his follow up in july
Op does your dc snore at night? if so then please ask for a sleep study to rule out sleep apnoea as this can cause problems.

I don't think she has sleep apnoea - she doesn't snore excessively, just sometimes breathes quite heavily, but not unusual I don't think. She doesn;t get tired in the daytime, and mostly seems to have had a good night's sleep.

For those talking about ear candling - don't worry, I'm not going down that route thanks.

Roulade - did you notice your son's glue ear causing him hearing problems? Hope he's better now and good luck for follow up appt.

I have been thinking about this post but forgot to come back to it.
We seen the dr on Thursday and after his last bout of tonsillitis and seeing the dr again they have decided he does need further investigation. (finally)
DS does snore badly and doesn't ever seem to have a good nights sleep so we are just waiting to hear what happens next.

Before DS glue ear was officially diagnosed we never really noticed any apparent hearing loss it was the speech delay that made me ask for a hearing test initially. I did wonder at times whether he couldn't hear everything or if he was just ignoring me. One thing was though he hated being in crowded places and after having an ear infection and being deaf in one ear for a month I could see why it is so hard to pinpoint certain sounds and the background noise just bcomes a mass of noise in your head.

My DD suffered from terribl ear infections and could hardly hear, the ENT specialist said to wait because her tube would widen as she got older.

She started to have cranial oestopathy and never looked back,. She would actually cough as the gunk from her ear was being manipuated out of it and running down into her throat.

GothAnneGeddes, chiropractic is based on the idea that if your spine is out of alignment it can affect all areas of your general health, glue ear is treated by adjusting the patient to clear the blockage - as I said earlier my 2 haven't had it but my chiro says she treats loads of children with amazing results. I know it isn't for everyone but I would certainly try it as an option before an irreversible operation any day

GothAnneGeddes - because they don't just adjust bones in the spine. They adjust bones of the skull, face, arms, legs - everywhere really. And if there is a blockage it may be cleared by having the surrounding bones realigned so that the debris can clear.

Might not help, but then again it might. I know of a chiro who has a good track record for fixing labyrinthitis that hasn't responded to other treatments, and that's middle/inner ear based.

There's a branch of chiropractic that is more gentle and so particularly suitable for children called McTimoney. My son had treatment from a mctimoney chiro and was a different child afterwards. His problem wasn't glue ear but it might be worth a google to see if there's one near you.

Sorry R O O I i haven't been on to answer you! No my son's hearing seems perfect as his speech is very well developed but from what i have read on this thread that doesn't mean it's fine!

It's so hard to tell isn't it. I'm watching my dd very closely at the moment and am becoming convinced that her hearing isn't as bad as the hearing test lead us to believe.....I think i'd like them to do it again to make sure.

For those of you whose children had multiple hearing tests, did the results vary much?

Thanks everyone for your help.

Sorry if this is a little confused as it covers glue ear and mother's 'gut response' to surgery in small children..

My DD has communication difficulties. Referred routinely for ear test and was diagnosed with glue ear (never any sign anything wrong with her hearing). Also enlarged adenoids (breathing loud at night, otherwise no problems).

At follow-up appointment glue ear completely gone but DD diagnosed with an unrelated condition that required complicated surgery. Doctor tried to get me to sign consent form there and then and we were told that the operation was the ONLY way forward.

Saw surgeon last week who was happy to leave surery for the time being (my DD has a thyroglossal duct cyst, a rare condition that leaves her with a large lump in her neck, but currently no other symptoms although there is a risk of infection). He informed us that her adenoids should be less of a problem as she grows.

I suppose all I'm saying from this is that we were told by several 'experts' one day that my DD would absolutely require an operation, but a few weeks later - with nothing changed with regards to her condition - another 'expert' felt that the risks were in favour of not operating.

I would not have gone ahead with surgery for glue ear or adenoids if I knew that my DD wasn't suffering from either condition, particularly - as in glue ear - the benefits are not guaranteed or permenant.

Not sure that grommets (or the t-bar I eventually had) were a perfect solution - but they did stop the pain had from recurring infections and a perforated eardrum. They also definitely improved my hearing while they were in. As and adult I have reduced hearing in one ear and rely to a degree on lip-reading, but it's only a problem in noisy situations. Try some of the other ideas by all means, but don't delay the operation too long if you don't see some fairly speedy improvments from the alternative approaches.... I'm sure your DD will come through it all with flying colours.

"For those of you whose children had multiple hearing tests, did the results vary much?"

With my brother - constantly. Mum was convinced he was deaf very early, and they told her he was trying it on. He's now registered deaf, hearing aids, the works. He was just very adept at lip reading, and had the hearing at a register that meant he could hear a lot in some circumstances, and little in others.

I'm a big believer in conventional medicine, but an equally big believer in mothers knowing their own children, and second opinions. Get more tests, if you disagree, definitely.

with my son the hearing test ranged everytime...but that is normal..glue ear often is worse in winter...because you are more likely to have a could, and hence it is more likely for fluid to accumulate behind the ear drum, causing problems...

oh and on chiropracticer...I must admit you wouldn't get me near one of those...my cousins partner went to one for something...he did something that they found out afterwards he shouldn't have...some sort of action that was known to cause problems...and my cousins dp had something presenting a bit like a severe stroke....they have had a very tough few years, as it affected him not just on a physical level, but also on a emotional level....as he found it hard to come to terms with his disability....

We were really scared and concerned about DD having the op - she seemed far too little (4) and for me it just seemed awful for them to be fiddling round inside her head. She had 30% and 40% hearing loss in each ear and it was affecting her personality and development (although we weren't really aware of how much till after), she was also having an almost two weekly cycle of virus (cold or flu) then bacterial infection in her ears/adenoids and I think living with quite a lot of pain.

Since the op (gromits in adenoids out), for which we were really well briefed on the risks and potential problems and extremely well treated by nursing and surgical staff, she has come out of herself, has massively improved speech (though like your daughter her sentence construction and vocab were pretty fab, but I think they may have to work extra hard), she can hear the tv, can sing along to music and hold a tune now, can be in crowds without panicking (anything with a lot of background noise she found very difficult because she couldn't hear what was going on and we put down to being"highly strung" or timid - which it turns out she isn't!), many fewer night terrors - often associated with children with middle ear problems, so I feel like her life has improved in all sorts of ways we couldn't have anticipated. Some of these could just be growing up but it was all quite quick.

If the cycle had continued as she started school she would have missed out on so much, both in terms of sick days and joining in and her confidence, so we have been very glad to have had it done successfully. On the down side we have pretty much given up swimming and she still gets repeated tonsilitus, but its so much more manageable. For me it was the moment, an hour or so after the op when she looked really surprised and said "mummy i can hear the birds tweeting" that made all the fear and worry worth it.

Your anxiety as absolutely well placed and reasonable and examining the options and weighing up what you and she need to do is exactly where you should be with this. But do try and have faith in the experts, they do know a bit about it and aren't just suggesting an op out of laziness or spite or ignorance. Anyway if you do it on the NHS (who were really fab to us in so many ways), you will prob have to wait a few months and you can try the other stuff in the mean time, and if it works for you and her, then no problem you can cancel. Sorry I always go on a bit, but wanted to give you a happy version of events!

Thanks
Badgerqueen - I'm really glad it all worked out well for your little girl. Thanks for your story.

Thanks for the thread runoutofideas, I'm just starting a journey to find out about my ds and his selective hearing etc. its been really useful to read through this and good luck for you and yours.

Hi
Just wondering what you decided to do in the end Runoutofideas? My son who is only 13 months is now on the waiting list for grommits. I know they can have some complications (eg continued discharge through the grommits and ear perforation) but this is less than 1 in a hundred so overall I think we are probably go to go with it. DS has had so many ear infections since last november that both his and our quality of life have been severely affected. (He has glue ear on both ears) He has had probably had more than 20 infections in less than a year. We have tried a long course of antibiotics (when we first saw the ENT specialist 3 months ago) and cranial osteopathy (about 10 sessions so far - it is hard to tell if this has any impact and it is very hard for them to treat a wriggly baby). We were told the grommits op is half an hour and just day surgery. We have our reservations but we really want to try and stop the cycle of ear pain (and the associated sleep deprivation etc that accompanies it) We also feel his hearing is beginning to be affected and want to prevent any speech and language difficulties developing. If you did have it done - how did it go?

annadbath, my ds had grommets done when he was 18 months old. The 12 months prior to that had been a constant round of ear infections, burst eardrums, pain, continual foul smelling discharge from the ears and long term antibiotics. He made no sounds (could cry, and laugh occasionally). Within an hour of the grommet operation he was eating toast. He would have been well enough to have gone back to nursery that afternoon. He said his first word three days later, followed by a speech explosion. He had a few minor ear infections after that, but never to the pain level and foulness he had constantly had before. I personally wouldn't hesitate to say your bay should do very well from the op.
He's 14 now btw and has had no speech/lanuage/hearing problems since.

Runoutofideas, I'm not a health professional but I work in the NHS. The NICE guidelines on this topic, which are based on the BEST AVAILABLE EVIDENCE, and which were published last year, say this:

"The following treatments are not recommended for the management of OME: antibiotics, topical or systemic antihistamines, topical or systemic decongestants, topical or systemic steroids, homeopathy, cranial osteopathy, acupuncture, dietary modification including probiotics, immunostimulants and massage.

The persistence of bilateral OME and hearing loss should be confirmed over a period of 3 months before intervention is considered. The child?s hearing should be re-tested at the end of this time.

Children with persistent bilateral OME documented over a period of 3 months with a hearing level in the better ear of 25?30 dBHL or worse averaged at 0.5, 1, 2 and 4 kHz (or equivalent dBA where dBHL not available) should be considered for surgical intervention."

The full guideline is here if you're interested.

So not only are you not being unreasonable in wanting to delay, it appears that the evidence agrees with YOU, rather than the specialist.

The NHS is supposed to follow these guidelines. Private care doesn't have to. Have you been offered the option of waiting?

Only realised how old this thread was after I posted! Hope my post helps someone else, if not the OP.

Realise this post is quite old but I could have posted the same post as runoutofideas 6 months ago as my child was 4 years old with glue ear and ent dep suggested adenoids out plus grommits. I was reluctant to go down this route particularly as she'd never had ear infections. Decided on policy of wait and see. Last month hearing tested again and no improvement. This time saw consultant and hearing aids were suggested. She now has bright purple hearing aids and she's as proud as punch. A teacher of the hearing impaired will be visiting her at scool early next term to see how she's coping and she has a follow up appointment in 3 months at audiolgy dep. She's only had them a couple of days but her hearing is so much better.She wears them 12 hours a day. There's lots of useful information on the ndcs website

Twinmum - I'm not sure of the point you are making - do you think the grommets operation could have prevented your dd's need for hearing aids?

Ime experience with paediatric consultants they are usually very reticient to operate unless there is a real need. If they had been quick to operate then ds would have had his hips set in plaster as a baby, his tonsils out at 18 months and been circumcised at 2.5. Thankfully he has had none of those because the consultants involved in his care waited to see how things developed.