any other parents of hearing impaired children out there?

[2under2]

We've just found out that both our daughters (3.5 yrs, 22 months) have a moderate hearing loss due to glue ear. Thankfully our eldest should be able to get it sorted out with grommets, but the little one's placement of grommets was unsuccessful because her ear canals are just minute. The ENT surgeon is pretty certain that grommets won't be an option for several years and also that the glue won't just go away, so now we're looking into hearing aids. I was wondering if there's anyone else here who has a child with hearing aids?

Thanks for all the tips and advice - our next appointment at the clinic is set for April so I will definately ask about another kind of hearing test and some bespoke ear plugs for swimming.

hello 2under2, sorry I haven't checked the board for a while so this thread has developed in a different direction - but here's our experience in case it helps. Our oldest (3 1/2) has DS, she had grommets at 18 months and small passages etc meant they were the temp ones anyway - and they didn't work. We went to hearing aids, feeling terrible that we put her thru a general unnecessarily and she has tolerated them really well, more importantly we saw improvement in speech straight away and she continues to improve. We will never know whether it is the hearing aids or where she would be naturally by now, but for a little hassle it is totally worth it. Only prob we encountered is that she would take them out for attention when at nursery - we would lose on average 1 every month which was a real pain as they are individually made. Kind of blame the nursey tho (we now have a nanny and A. attends state pre-school) as we haven't lost one since she left last summer. I have a friend with a little girl with DS, and they have gone the CO route - but there's no reason why you can't do both. Hope this helps

sinclair, thanks! Makes me feel better about dd not having grommets. Good to hear the hearing aids helped so much. What kind of aids does your daughter have and what level of hearing loss? I am quite upset about dd's speech development as she used to say 3-4 words at age 18 months (she's nearly 23 months now) but doesn't say anything at all anymore (other than babbles and growls). :-( So, we'll be seeing the ENT consultant this afternoon and hopefully be referred to an audiologist. How is your dd's speech now? do you use Makaton too?

just an update on what the ENT consultant said (if anyone is interested ): xylitol was hailed as the wonder drug a while ago but has since been proven to have very little if any effect and often causes stomach pains (I've read this in a few more recent articles, too). Standard behind-the-ear hearing aids shouldn't be a problem even with narrow canals and soft ears, they can just be stuck to the head with toupe tape for extra support. Dd's hearing loss is not as bad as the test made it out to be - he thought it was mild to moderate, which is good news but she'll still need hearing aids for speech development. Persistent glue ear does not cause permanent damage (I was worried about this - read it somewhere online). Eidsvold - I hope you are under an audiology department that treats agressively - the first one we were under told us that dd probably had glue ear and hearing loss but that NOTHING could be done. So I got a GP referral to go somewhere else, where they immediately booked dd in for several tests etc. I suspect that when you hear of people with DS who have no speech almost all of the time it is down to untreated/unrecognized hearing loss during childhood. My dh had severe glue ear as a child and didn't learn to speak properly until he was 8. Because of this he was regarded as being a bit slow by his teachers and family, which greatly shaped his school life. He is an IT management consultant now, but everybody always thought he should just aim for a manual job and shouldn't bother with A levels etc, which is pretty sad.

not sure 2under2 dd has her next appt in March with specialist and audiologist. Hopefully we will know more then. But having a dh who worked in the NHS and having survived the nightmare of dd's surgery - I am no longer embarrassed by being very very assertive when it comes to dd's care. But will let you know how we get on in March.

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2under2, I am so sorry I don't know what sort of aids dd has other than they look like ones adults have - only smaller - transparent 'moulds' that fit in the ear connected by tube to a little box the sits behind the ear. Sure we weren't offered anything fancy knowing our AHA! After much trial and error we find double sided tape works best to secure the box (A has tiny ears, quite common in DS, so securing the box is paramount) and it is easier to get hold of than toupe tape! She has around 80% hearing, enough to hear everything (we've been told) in a one on one situation, but the aids enable her to distinguish everything that's going on in for eg a nursery situation. Once we heard this we were convinced. We use Makaton also, starting (far too early and enthusiastically) at around 9 months and are now using it (much more selectively) for ds too. dd has responded v well to the signs, inventing her own, and usually saying (an approximation of) the word quite soon after. Finally, to set your mind at rest, we often 'lose' words but they do reappear - we had 'hat' I remember before dd was 2 but it has only just come back.

Well we went to see the ent specialist and audiologist for what should have been a full hearing check - 5 minutes later we were out of there.

They basically repeated a test they had done earlier ( ear plug in the ear - transmitting little clicks to check for fluid build up) - very little was even said to me - the consultant did not even bother to introduce himself - nor did the audiologist or the third peron who was there ( why I have no idea) .

They spent about two minutes listening to what I thought dd's hearing was like and then did one test and then spent the rest of the time discussing amongst themselves whether they would be available for an appointment in August ( her next check up).

I am not that small that I am invisible in a consulting room. The only reason I knew the outcome of the test was that the audiologist ( different one) explained it in great detail last time so I was able to work out what had happened.

I know I should have said something but I was so annoyed that I just wanted to get dd home for her lunch and her nap. Next time I will not be so quiet. Normally I do ask if I am unsure and I make sure I understand what has happned but I could not believe how rude they were.

Anyone else have a problem like this??

all the time eidsvold. It drives me up the wall. If I hear one more time "as a parent you know your child and his needs best" followed by completely ignoring anything I say I will scream.

I am currently trying to get the results of some blodd tests that ds1 had done 7 weeks ago. i am assuming they are negative but one was a chromosome check - and as that could have repurcussions for ds2 - I would like to know they are negative- can I get the results? Not last week as consultants secretary was away- and so far can't get thorugh on the phone. When a different secretary answered the phone last week I was met wth tuts and sighs when I explained I was trying toget some results. Now I'm not too worried about the results- but I could have been anyone- i could have been a mother of a child with cancer stealing herself for latest blood test results- couldn't beleive it. When I said I was particularly interested in the fragile x result she did become a bit more helpful (but didn't ring back or anything).

Agggghhhhh. No advice- but yes I recognise totally where you are coming from.

Going back to the test that bundle was talking about - my ds3 had it and as long as he was quiet and still it worked fine (asleep would have been good but wasn't necessary); surely the same would apply to an older child?

jude she already had that test twice - the second time had to be abandoned as she was too chatty. This time she was very quiet and still but that was not what she was supposed to be tested for - she was to have a full hearing test.

I am not so concerned about the test but the rudeness and lack of social skills of the medical staff that were part of the consultation.

I think they learn arrogance at medical school eidsvold. Still trying to get the blood test results...... 6 hours later. Surely it shouldn't be this difficult.

I'm surprised when I can even get through for results. It's harder than pulling teeth sometimes. Ds had an mri in september and we waited months to get an answer, despite phoning the consultant who ordered it, the new consultant who needed a copy of it, and GOSH who second reported it. Also trying to get answers from ds neurologist any other time except during appointments is nigh on impossible because of an extremely unhelpful secretary, who specialises in stonewalling and patronising. I would consider changing doctors because of her but for the fact that this particular doctor is worth his weight in gold.

jim jams - any results yet??

No- I did get hold of my GP who doesn't have them. Couldn't get an answer from the consultant's secretary. I'll try again tomorrow!

lou- it's staggering isn't it- you would think that they may realise that as a parent you might just be interested in the mri results!!!! It's a worrying enough examination to nned without having to fight for the results. The lack of empathy never ceases to amaze me!

In defence of the docs (yet again) mri of the cochlea is very very difficult to interpet and usuaslly involves a case conference with several people putting thier heads together. Also its not always appropriate to give test results over the telephone, if its difficult or bad news its best delivered via the person who can discuss treatment options with you face to face

All very well in practice cos but unforunatley it doesn't work like that. My friends daughter has just collected another diagnosis to add to the collection she already has. This dx came form a specialist in that field so my friend requested a word with the paediatrician who is responsible for her daughter's overall care. Nothing- except a letter for an appointment in August! In the end she went to se her GP who said he couldn't tell her much and she needed to see the peadiatrician.

I STILL haven't got the blood test results. I've tried my GP (doesn't know anything about them). I've been trying for a week now. I'm sorry but if your chld has a chromosome check some sort of system should be set up to allow you to find the s result. The result has repurcussions for ds2 as well, and if I was ttc I would be very interested in the result. I've said it before and i will say it again. Autism is nowhere near as much of a pain in the a* as trying to deal with the system that is meant to be there to help. Right I'm off to try and get the blood test results again.

I just want to clear up that the mri was for his brain not his cochlear. Ds seems to have ok hearing now, but he still failed about 4 tests, and has one more to do in about a year before he gets the official ok.

Also Cos, imo it may not be best to give results over the phone, but is sometimes better than having to wait 3 months for an appointment and be worried out of your mind in the meantime. I think in some cases it may well be a better form of appointment. How many times have I trotted one of mine along to the hospital, sat around waiting to be seen, just to be told to come back in x months again, nothing done just a how are you visit? If some appointments could be done speaking over the phone it might help waiting lists. Luckily one of ds's hospital appointments are quite happy to do that with him if there has been no change (his dietician). I think this is very sensible in some situations.

I agree totally lou. Even the waiting room is a trauma for us. Usually we are kept waiting for at least 30 minutes in a waiitng room which is basically part of a corridor with 2 doors in it - everyone keeps marching through and ds1 has a door obsession. I totally lost my temper last time- ds2 was screaming and ds1 was obsessively watching the doors shut (and if they shut "wrong" had to be opened and closed again). Appointment was a total waste of time. If my son could wait happily in a corridor I wouldn't need to see anyone.

And however difficult the tests are to interpret I think if a child has had a test you psychologically need a result to switch of the subconcious (sp??) concern. I still haven't got the blood test results. I left my name with someone else - using my title (Dr) -thought my call may be more likely to be returned , but nothing.

Sounds like you had the same people to deal with as me when I was trying to get ds's mri/hip xray/answers on blood tests Jimjams! The secretary actually reduced me to tears when I got off the phone, because of her attitude, including insisting calling ds "the child" instead of by name.

Oh it's awful isnt it lou. I'm sure these people forget that these are our children they're talking about. i often feel as though my son is seen as beng slightly less than human.

BTW came across another thread of yours about "friends" who don't mention the disability. And yes I have had to bin a few of those. I have friends who haven't managed to use the A word yet in my presence and who forget to ask anything about ds1 at all. TBH I just avoid them as much as possible.

Still haven't got the blood test results btw!!!!
Ahh well tomorrow is another day! In fact if I haven't got them by tomorrow I think I will write a letter direct to the paediatrician asking him to send me a copy.

As if you don't already have enough to do!

totally agree wit all said here - cr*p isn't it. I just thank god for my brilliant GP who always manages to get results quickly for me. We had results to a recent mri, 24 hrs later. Though this might be cos I know where the consultant's sec is and i have 'visited ' her several times when I want info. Needless to say ....she doesn't likes visits so does anything to keep me away

oh no , all this has reminded me that i need to ring ds's physio today ,he's really limping at the mo so we should probably see her sooner than later. And it's a new physio so we'll be back to the beginning again...ho, hum, sorry to moan