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

Sorry can't help with uvula thing but I can probably answer hearing aid questions. How old is he? Did he get to choose pictures for his moulds? You need to know that they grow out of moulds and when they do the feedback can be terrible, how often they need replacing will depend on his age. You will need to change the battery about once a week and you should really carry spares. The tubes to the moulds get condensation in them and they should give you a puffer to blow it out. Do you know what make / model of aid he is getting? It will be programmed to his loss but it may need tweeking so don't be afraid to go back. Feel free to ask away about hearing aids, hopefully he will like it, depending on age he may need help to get it in.

Thanks geogteach...He is 3, yes he is having spiderman in his mould .

I have no idea what make/model he will be getting, i should have asked that i guess, why do you always think of questions after? lol.

Another thing they said was that one eardrum is a little out of place, not sure what that means either really.

I know absolutely nothing about hearing aids, so i really am clueless! do they come out easily? as in maybe in p.e or when running around?

Thanks for helping me, i really appreciate it.

Pucca - meant to reply to your other thread.

My DD1 has moderate hearing loss due to glue ear. She has had at least 4 sets of grommits (she is only 4!). Her case is complicated as she had a cleft palate (now repaired).

I don't know what a "ridged" uvula is but have come across the term bifid uvula a lot - it generally indicates a sub-mucous cleft. (Lots of info if you google.)

Have a look at your son's uvula - does it look like it's got a notch in it?
I am not trying to worry you, it's just that some of the other things you mentioned (poor speech, dribbling etc) sound like they could be linked to a sub-mucous cleft but they could also be due to general ENT probs with enlarged adenoids/tonsils etc (my DD has all of this and more!).

I could totally be barking up the wrong tree but tbh I think what you've been told simply is not good enough. If you are not happy ask for an ENT referral. When I read threads like this I am amazed at how poorly some health professionals treat parents/drip feed information.

Grommits are a contentious issue but I really don't understand what the uvula has to do with it - unless they are suggesting the architecture of your son's ear is a bit different to normal - in which case imo the opinion of an ENT consultant is a must.

Good luck with the hearing aid - DD was all set to be aided last year when suddenly her hearing improved sufficiently for them to let her go without (we have had bone conductor aid when she was a toddler) so have no experience on that side of things at present.

Hi eshermummy...yes i have just had a look and it isn't a smooth shape, i compared to my dd's and it is different. It does have a sort of ridge in between 2 sides iykwim.

I did ask about adenoids but the doc didn't really take me up on that. Sort of implied that wasn't an issue. What the doc said to me was because his uvula has this ridge, misshape that ENT would not operate as it would mean lots of ops as it is a prolonged case of glue ear it isn't just going to drain and thats it...i don't know, i am very confused

Thankyou for helping me out with this, i have no idea.

Now i do remember the doc saying something about submucous. God why can't they explain things properly! really winds me up

My DD has a prolonged case of glue ear because of her cleft but that still hasn't stopped them operating. In our case surgery was recommended because her architectural issues made it more likely the glue ear would abate by itself.

Who exactly did you see - was it a consultant audiologist? Have they suggested a referral to ENT? If they suspect a sub-mucous cleft then they should really be referring you to your regional cleft team as as far as I know an operation is usually required/recommended.
Maybe you can ask some more questions when you go back for the aid next month.

I am just surprised because our audiologist deals with hearing related issues and defers decisions about surgery to our ENT consultant although we have frequent multi-disciplinary group meetings where everyone (audiology, ENT, cleft surgeon and SALT) pitches in and makes a plan of action jointly.

Out of interest, how well did he feed as a baby?

No there has been no mention of ENT, which is a little strange do you think i should go and mention it to my G.P? as he can refer.

I cannot think of any issues tbh with feeding as a baby although he does tend to breathe through his mouth and his speech is quite nasal sounding iykwm? his speech sounds are the problem not his understanding, he misses sound off the end and it is very unclear, his sleep is terrible too, and of course as i mentioned before he still dribbles alot.

Yes it was a consultant audiologist at our main audiology clinic, i went to a local one last time.

It is a long story why we ended up here today, as ds was due a repeat hearing test but the audiologist he saw last time has broken his leg and i was first told i would have to wait until he was back in Feb, of course i didn't accept this, pestered my H.V etc and managed to get this appointment today because i said i would go anywhere, anytime.

So with your dd, has the op made the glue ear clear? is she ok now?

Why do they treat us parents like we are stupid? i feel quite agitated now as i am still left not knowing what on earth is going on with my little boy.

One other thing i have just thought of which may be connected too, is ds gags very easily.

Sorry, I have not meant to agitate you further.
I just think that as he has other related ENT issues - which could well be his adenoids - you should have input of ENT to see if anything further can be done.
What I would do is (at your next appointment) ask the audiologist to clarify exactly WHY he feels surgery/grommits are not appropriate for your ds and to PROPERLY explain what he means about the uvula/sub-mucous comment.
If at any point he mentions any sort of cleft ask to be referred to your regional cleft team.
Ask whether in the light of your son's speech, mouth breathing, dribbling and poor sleep you shouldn't be referred to ENT to have his adenoids looked at. (I think poor sleep is linked with over-large adenoids as this was one of the questions our ENT consultant asked us about DD1 when we were discussing adenoids).

DD1 has hyper nasal resonance due to her cleft but I think many children can have a nasal tone for different reasons.

What does your SALT say?

Am going to bed now but don't worry. Glue ear is very common and I think there is a lot of variation/opinion in how it is best treated. Your audiologist may well have made the correct clinical judgment for your DS but I don't think he has explained it very well so you are entitled to keep asking questions until you are happy.

DD1 still has glue ear, grommits have only been partially successful (in one ear more than the other). They are great when they first go in but one ear does not tolerate them for very long and they fall out. However the build up of gunk was so great that it was distorting her eardrum and causing permanent damage so grommits were the best option at that time. She has also been on la daily low level dose of antibiotics for past few winters in an attempt to reduce infections and our consultant has also "authorised" our GP to prescribe antibiotics at the first sign of anything as she is very susceptible to ear infections. We have also tried a short course of steroids and she's been on a nasal spray for the past 3 months which also helps.

Eshermummy of course it is not you who has caused my agitation its not being told properly what is going on at appointments. I do really appreciate any help/advice you have given me.

All i can clearly remember is the audiologist saying ENT will not operate because of this with ds's uvula, and when i mentioned adenoids maybe being a problem, he just said no and changed the subject. He said now they do not reccommend anymore than 2 ops for grommets, so it would be no good for ds, as this thing with his uvula points to it being prolonged glue ear.

It was when he spoke to his colleague he mentioned the submucous, but he may have said the word to me too, because he said something about his soft palate.

Sorry to hear your dd1 is still having problems with glue ear.

Thanks you so so much for all this. It really helps to talk to someone who has been there.

Oh and he also said something about the muscles connecting to ds's eustachian tube not working right. I should have taken a voice recorder with me, its coming back in bits and bobs.

Pucca - the more you are telling me the more I think there is a sub-mucous cleft - you MUST get a referral to a cleft team at a regional centre if that is what they suspect.
Apparently according to the clapa website I was wrong and many sub-mucous clefts don't require surgery but only a cleft surgeon can make that call.

It is common for children with clefts to develop glue ear because of poor muscle tone in the palate and connecting to the eustachian tubes and if he mentioned the soft palate too.....I def would get it checked.

There is lots of info on the clapa site.
Whereabouts are you? You are not in London/south east by any chance are you?

Sorry, I also meant to say that It is correct that ENT will not usually remove adenoids where there is a cleft so maybe this is what he means about ENT not operating but tbh imo that's not an audiologist's decision to make. Grommits however are a completely different op - not all teams stop at 2 sets - like I say DD1 has had 4 and they haven't ruled out her having more in the future!

If you are referred to a regional centre for clefts then you will be assigned a proper "team" of consultants who will liase together as to what treatment/actions can be taken.

Clapa has a list of regional centres - work out which one you come under and if you get no joy from the audiologist ask your GP to refer you. I don't know if you can self refer.

Eshermummy...I am in Lancashire. I have made an appointment with the G.P for tomorrow so i will see if he can help in any way, or refer him on.

You know what i don't get? is why they are giving him an hearing aid, and no other appointment has been mentioned, he even showed his colleague ds's uvula and said look, can you see?

They seem to talk in code between themselves, and leave parents not knowing. So if it is what we are thinking, and they do not operate, then surely this glue ear is going to be a pretty permanent thing? as it isn't going to get better by itself is it?

They sort of talked me into aids being the best option yesterday, as they said with grommets, once they grow out, then he will need others and it will go on and on, and his hearing will change all the time etc. With aids, this will give him a constant solution type thing, as his hearing won't fluctuate.

Sorry forget to answer earlier question about SALT, they haven't said much to be honest, they just said that there isn't really much they can do with ds at the moment, and they will review him in Feb. I did tell them about the first hearing test though, so they know something is going on.

He is missing sounds, the last report i have here in front of me and it says...

He is not using /f/ sounds, and misses off endings of words such as bed = be...broke = bow. His context of speech is difficult to understand. They also pointed out that they think he has low muscle tone which is why he dribbles.

His speech is very unclear, infact i as his mother struggle sometimes to understand what he is saying, so strangers don't have much chance. Yet some things he can say quite clearly, and it shocks you, but that doesn't happen very often.

this is what I would do:

Go to your GP tomorrow, tell him what you have said here.
Don't say anything about not wanting hearing aids as they may well be the best course of action on the hearing side of things.
Just say that the dr mentioned a lot of other things but didn't explain properly to you what they meant.
Make a list of all the words/phrases you can remember.
Tell your GP that everything you can remember the dr saying, coupled with the symptoms your son already has - make a list of these too, points to there being the possibility of a sub-mucous cleft and you would like this checked out properly.
Tell the GP that your regional cleft centre is located at X hospital and that is where you wish to be referred.
Clapa has a list and also phone numbers of cleft co-ordinators - you could always ring them and ask what the referral procedure would be.

Good luck

hi pucca! em talks sense, how can an audiologist decide what an ENT doc would do? Definitely get back on to the ndcs audiologist. Ask about an ent and cleft team referral and don't take it if he says he can't do it (remembering your thread before and your helpful gp!) because he bloody well can. Did they say anything about the sensory impairment team here if not, take the details for the right area with you and tell your gp to do that too. The hearing aid should help with your dss speech but it can take a while so salt input will be quite important. I know it's hard work that you really shouldn't have to do (should happen automatically) and I have spent many hours on the phone myself but you will get there and it will be worth it

You two are both wonderful!

I really cannot thank you enough...seriously. I will do all you have said and will update as i go.

Bc...i will have a look now at the sensory impairment team, thankyou.

Sorry forgot to come back to this yesterday. I am surprised you haven't had ent referral that was the first thing DS got before audiology would consider aids. We have also had more than 2 sets of grommets so that bit is tosh. Kids do grow out of glue ear as they get older the ear shape changes so ears drain better but this isn't till around 8 hence why younger kids get grommets, there is also a more permanent solution called t-tubes which we had mentioned but i think these don't fall out like grommets so have to be removed at a later date.
On hearing aids a good tug will pull them out but not running about. The aid may flap around the ear a bit on younger kids but they can be stuck down with wig tape if you need it. On young kids you can also use huggies which attach the aids to clothes (hard to explain) so they are not lost if they fall out.

my LO had aids for a while as well (we had new molds every 6-8 weeks so I hope you aren't kept waiting for the aids for too long), they need a bit of a shove to go in but after that the mold shouldn't come out easily (if it does its time to get new ones). use tape or clips to keep them from falling off during sports, otherwise they'll be fine. Not sure I fully understand why aiding is a good idea if the ear drum isn't moving, as an adult sufferer i can't see how increasing the volume is going to help if the quality of sound is poor.

Thanks geogteach and hatchypom....some great advice. Hatchypom...i am not sure on that either really

Well i went to G.P for all the use it was! he just said oh erm not really my speciality, and didn't take me up on ENT.

So will ask all at appointment in Jan, the 6th he goes for the fitting, got told that yesterday so thats good, not too long to wait.

I did ring a lady off the cleft website, and she is going to get a cleft nurse to ring me for a chat so thats good.

I just don't understand the separation between ENT and audiology, get a referral from your audiologist to someone with a specialism and ask every question you can think of (take someone with you if you can't), we've also paid to see the same doctor privately to get proper answers best 100 i've ever spent.

take notes, read them back and google to within an inch of your life, lots won't be relevant but you never know...

have a look on yahoo for a support group you'd be surprised what an international group may be able to help you with

Pucca, there is a cleft palate department at Manchester Dental Hospital. My daughter was referred there by her audiology consultant. They are a regional centre and very good.

I have now found out after much googling that the audiologist that saw ds on Weds actually works in ENT (i think) and the clinic i took ds to is actually the main audiology clinic in the area as if you need to query anything you ring them direct.

I am def going to write EVERYTHING down for the Jan appointment, and i am not going to move until i have answers, infact i will even take notes, i don't care if i look an idiot!

Hopefully this cleft nurse from Alder Hey Hospital will ring me next week, so i can pick her brain and say all thats been said.

Thanks again everyone, i am sure i will be back to bug you all again soon as i will update on here.

I have added some pictures of ds's uvula and palate to my profile....