Ds getting a hearing aid next month......bit puzzled

[pucca]

Well he had his 2nd hearing test today and he still has a moderate loss. They have said that his uvula (dangly bit in throat) has a ridge which indicates its a prolonged case of glue ear, so grommets wouldn't be possible, no point.

So they have taken a mould for his left ear today,(the worse ear) and he gets a hearing aid next month. His air pressure test was completely flat on both ears.

Anyone heard of this uvula thing before?

Can anyone give me any advice about hearing aids?

Thanks

Well i spoke to the cleft nurse today, and she is coming on Weds to see ds. I had a really good chat with her, she said it certainly sounds like it could be the issue, so will just have to wait and see what happens on Weds now...

She said even if she is not too sure, she will refer to the cleft team to get their opinion, she seems really nice. She also said that even if its not a submucous cleft she will personally refer ds to ENT.

been away from the pc for a few days, excellent news to hear pucca! I really don't get your gp, surely it would be no skin off his nose to refer your ds! Will be keeping everything crossed for tomorrow that you get some answers and hopefully it will all be a little clearer.

Sorry Pucca - only just seen this after bumping other thread to ask you how chat with cleft nurse had gone.

She sounds great - so glad you have got someone to have a look and answer your questions.

I don't know where they recruit cleft nurses from but ime they are really wonderful people! I heart our cleft team.

If it does turn out to be a cleft then you really really couldn't be in better hands

Thanks eshermummy and bigcar

You both have been a huge help and thanks so much for coming back to the thread. I don't get the GP either, but the cleft nurse was telling me how she has had a few parents say they went to their GP and said i think my child has a submucous cleft and the GP has said "i haven't heard of that, it doesn't exist!"

I will def let you know how it goes with the cleft nurse tomorrow, she is coming between 3 and 4pm.

Fingers crossed i get some answers, even if only to eliminate a submucous cleft.

Well ds does have a bifid uvula....but the good news is that the cleft nurse couldn't see a submucous cleft.

She was so lovely and very helpful, and has penciled ds in for March time, i am to ring her in Feb and let her know how things are going as she did have a little concern but not enough to warrant a referral now.

pucca, that's good news! Sounds a totally different experience from the hospital. Did she say anything about ent, is everything a little clearer now? You sound much happier

hi Pucca

Am so glad the cleft nurse has been able to clarify re the uvula and also reassure you re the sub-mucous cleft.

Hopefully if they see you in a cleft clinic in March, even if there is no cleft, from there you should be able to access both ENT and SALT much more easily.
If it is a cleft clinic you are booked into then usually they are multidisciplinary - when we go to ours there is
cleft surgeons
general paed
genetics
ENT
audiology
SALT

so make sure you take FULL advantage and raise ANY and every concern you have about your DS even if you think it's not related as it really is the best place to get follow up appointments/referrals even if you don't end up needing to see the cleft team again.

Good luck

I am very happy from what the cleft nurse said she was so lovely, and stayed for almost 2 hrs...wish all nurses/doctors acted like her.

Thanks so much once again for all the advice and help you have given me.