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Original poster

Coping with glue ear/deafness - Any tips?

34 replies

bluebear · 26/02/2004 13:08

2 and a half year old ds has just been assessed as having a large hearing loss due to glue ear...he will be assessed again in 3 months then put on the (long) waiting list for grommits.
Any advice on dealing with a partially deaf toddler - in particular, how to cope in busy noisy places eg playgrounds/shops - when he wants to run about?
Thanks BB

OP posts:
2under2 · 26/02/2004 13:54

ah bluebear I'm sorry to hear that. It's hard to sit there and watch them not respond to a sound you can hear perfectly well. There is a good chance of it resolving on it's own - it did for one of my dds who also had considerable hearing loss for several months (she did the most bizarre rendition of 'Jingle Bells' which made us wonder whether her hearing had gone). Also take heart in the knowledge that it is such a common problem and most children have a period of hearing loss due to glue ear during their early childhood. The NCDS does a fact sheet on glue ear and what you can do to help your child here

Freckle · 26/02/2004 14:01

have you considered seeing a cranial osteopath? They can work wonders for glue ear with no intervention (drugs or surgery). I know many children who have been helped in this way and have avoided grommits. The benefit with CO too is that it can have very rapid results.

Original poster
bluebear · 26/02/2004 14:14

thanks 2under2 - ds has got a 'significant history' of speech delay and the audiologist said that she avoided grommits as much as possible but ds is one of the few children she thinks that they will be really useful for. I am a bit in shock as although I knew he had speech problems I really believed his hearing was okay... he has been lipreading a lot.

Freckle - thanks.. I'll look into it..would be nice if we could avoid the op.. and get this sorted quickly as it's having an effect on his personality.

OP posts:
Northerner · 26/02/2004 14:22

Hi Bluebear. Sorry to hear this. My ds (22 months)is having grommits inserted in April due to many infections and countless hearing tests. He has a slight hearing impairment which in turn is delaying his speach. Although he does not do well in hearing tests, in real life i do not notice him suffering any hearing difficulties, and neither do his nursery. We have tried CO but for us, it not give results unfortunatley but I do know of people who swear by it.

How long is the waitlist for grommits?

Original poster
bluebear · 26/02/2004 14:38

6 months just to be seen at ENT clinic so op will be longer - ds is definately suffering from his hearing - a lot of his behavioural problems can be explained by it so at least we know now.

OP posts:
twiglett · 26/02/2004 15:45

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Northerner · 26/02/2004 15:49

BlueBear I would kick up a HUGE fuss also. Ring the hospital and speak to the specialists secretary, I would demand that he is seen sooner. 6 months is far to long to wait.

Thomcat · 26/02/2004 15:57

Ahh, sorry to hear that Bluebear
Hpw was the test in the end, was it like mine ehere he had to be asleep and have electrodes.

i can second the cranial osteopath.
Are you near London, could you get to Farringdon?
Let me know and I'll get you their number.
they are meant to be great fro treating glue ear and I've just started taking Lottie back there for that reason. you also pay on a donation basis so you give what you can.

2under2 · 26/02/2004 15:59

the waiting times for grommets are outrageous - we ended up getting it done privately (in conjunction with adenoidectomy & overnight stay due to dd's medical history) and it cost £1500 ('just' grommets and as day surgery should be well under £1000). Dd really needed to have it done before the winter for various health reasons and this was the only way. Bluebear, have you thought about getting some hearing aids for your ds whilst you wait? My dd just got some new ones yesterday (she has middle ear dysfunction and the grommets never really helped) - she is very accepting of them and actually really proud of her 'ears'.

Northerner · 26/02/2004 16:02

After reading this I feel really lucky that we haven't had to wait so long. Specialist decided in early Feb that ds needed grommits and we have been give a date of 7th April.

jmg · 26/02/2004 16:04

Bluebear - glue ear can often be allergy related - with dairy allergies being the most common offenders. Can you try taking him off dairy for a few weeks and see if there is an improvement?

Are there other things that you suspect he may be allergic to?

JJ · 26/02/2004 16:08

bluebear, so sorry to hear that. My son went through it (the hearing loss and grommets) when he was 3. The suggestions I have are:

  • always get down to his level and make sure he's looking at you when you speak to him
  • try to eliminate background noise if poss (not poss in a shop or playground, I know!)
  • tell people he can't hear that well, esp when/if he acts bizarre (maybe that was just my son...)
  • use loads of simple gestures (come here, calm down, etc)
  • to get his attention, touch him on the should and/or gently turn him arond

In shops and playgrounds, you'll have to rely on other people to help if he's not within touching distance. Shouting doesn't work all that well, esp with background noise. If he's at the point of understanding you (developmentally, I guess) then ask him to look at you every so often.

I know it's a pain. Good luck with the grommets. They made a difference right away for my son.

Luckymum · 26/02/2004 16:23

Bluebear.....agree with JJ's suggestions....its very frustrating for them in crowded, noisy places in particular. Also as mentioned, dairy increases the amount of mucus produced and can really aggravate the problem.

My ds1 & 2 both had grommits (and tonsils/adenoids out) when they were three and it made a huge difference to them both. Ds1 was having speech problems which resolved soon afterwards and ds2 was having behavioural issues including tantrums, headbanging and night terrors and again these settled following surgery.

My advice is to make a nuisance of yourself, keep calling and tell them that you will accept a date a short notice (a cancellation)if you can. We paid to see the consultant privately and then got the op on the NHS which cut down the wait quite a bit. Good luck

Original poster
bluebear · 26/02/2004 16:31

thanks everyone - ds has had speech, behavioural and sleep problems since he was born so I am now hoping that this might be the basis of all of the problems.
JJ thanks for the tips..I've noticed a difference already this afternoon just by crouching down and talking to his face! Most worried about how to deal with him in outside spaces- we have just come out of a period where I wouldn't leave the house alone with him as his behaviour was so extreme (and I was pregnant/had newborn) I couldn't cope. (Full screaming tantrums headbutting the pavement were common). He has got better behaved recently (hasn't had a cold for 3 weeks so maybe his hearing is in a 'good' phase but he won't stay in a shopping trolley and won't stay by me if walking (and won't hear if I call him back)...Looks like I might have to try reins for a while.. last time I tried reins he just sat on the pavement and refused to walk.

OP posts:
Original poster
bluebear · 26/02/2004 16:33

oh.. and we're vegetarian so would find it very hard to cut down on dairy

OP posts:
jmg · 26/02/2004 16:38

Bluebear - do you think that it is possible to cut down the dairy within the vegetarian diet by using milk substitutes. Dairy allergy could well be the cause of the sleep and behavioural problems you describe. I know it wouldn't be easy but if it helps it is well worth doing.

FWIW my son had severe glue ear from about 6 months to 18months old, along with very frequent ear infections. I took him off dairy and within 2 weeks the glue ear had completely gone and in the 2+ years since he has only had about 2 ear infections, compared to about 1 every 3 weeks when he was on dairy!

The other signs of dairy allergy would be excess dribbling and a runny green nose (yucgghh)!!!!!

HTH

JJ · 26/02/2004 16:43

Bluebear, that sounds exactly like my youngest! He's nearly 2 1/2, but doesn't have significant hearing loss the ENT said. I don't really trust this guy, so am taking him somewhere I know as well as for a speech and language assessment. Does it vary in intensity sometimes? I think my son's hearing is better or worse, depending on what, I don't know (well, the level of gunk in his ears, but who knows what that depends on).

Anyway, what really helps for the tantrums is copious amounts of wine. That's to be ingested by you, after he goes to bed.

Thomcat · 26/02/2004 17:09

Do you want the details for the cranial osteopath?

Original poster
bluebear · 26/02/2004 17:16

Thomcat - there's a c.o. near us so I'll try them..thank you
jmg - we've got the excess dribbling - soaks 4 or 5 shirts a day!
I'll discuss his veggie diet with dh (he's veggie I'm a flesheater!) and see what we can do to cut down at least..he does like his 2 beakers of milk a day.

OP posts:
Thomcat · 26/02/2004 17:22

OK - if your near london though this is a centre esp for children and you pay what you can afford.

good luck with it all and lots of love.

Original poster
bluebear · 26/02/2004 19:31

think it's the same one I'm thinking of!

OP posts:
Thomcat · 26/02/2004 20:07

The Osteopathic Centre for children in Farringdon. They used to be in Harley Street.

Original poster
bluebear · 26/02/2004 20:14

yup

OP posts:
Thomcat · 26/02/2004 20:18

Aha! I'm going in a couple of weeks time and meeting madgirl for the first time afterwards!

robinw · 27/02/2004 07:00

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