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Post by claireyd22 on Jun 20, 2007 21:09:18 GMT
We had an appointment with the audiology consultant today following George's 'sleep' test a few weeks ago. Well it came as a huge shock but they are recommending hearing aids. The other option was grommets but they didn't seem too keen on these as they said that glue ear (which is mostly what the problem is) tends to be a continuous problem for kids with ds so normal grommets wouldn't be enough. They said they could use 'long term' grommets but these tend to cause lots of infections and may need removing and replacing on occasions. I feel really confused, I never expected him to need hearing aids but don't want to cause him more problems which speech in the long run as he's likely to be delayed anyway. I also don't want him to get ear infections from grommets as he's so well and happy usually and an ear infection would affect his hearing aswel. So I think we'll probably go for the hearing aids. A teacher of the deaf was going to ring me tonight to arrange to come and see us but I've not heard anything. I was really upset when I came out of the appointment and feel really down now but not sure why as they are only hearing aids. There's far worse things. I think its just that I don't want George to be different. Has anyone elses kids got hearing aids or had long term grommets? x
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Post by Tace on Jun 21, 2007 10:41:55 GMT
Sorry Leo doesn't have hearing problems, I just wanted to send you a BIG ((((((HUG)))))) I know how you feel about the whole "diferent" thing as I'm the same when it comes to stuff like that, vain maybe, but I can't control how I feel only how I deal with my feelings. Hearing aids are getting smaller and smaller these days so I'm sure he will look fine.
T x
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Post by lizzymd² on Jun 21, 2007 21:41:34 GMT
Awww thats not good. We got a shock with cameron, we went along for a routine hearing test which he failed, so he got his adenoids out and grommets in. They managed a normal sized grommet in one ear and a special down syndrome sized grommet in the other. Just been back for a follow up hearing test which he has past, his speak is coming on as well probably because he can hear us..........lol I hate it when they tar everyone with the same downs syndrome brush! Can suggest adenoids out and grommets in, with the adenoids out it'll make that small area bigger, it will also help with flem etc to drain away and who knows the grommets might work, if they don't then you could agree to a more long term solution. Its worth a shot. Tell them about us and our success stories Good luck and big hugs
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Post by claireyd22 on Jun 22, 2007 11:16:35 GMT
Thanks for the replys, i will ask about the adanoids. Spoke to the teacher of the deaf (hate that title) and he's coming to see us on Tuesday to discuss the options. He was talking about 'bone conduction hearing aids' which i've looked up on the web, doesn't fill me with much hope after reading it. Think they might have to be kept in place with a headband which we are not keen on at all. Roll on Tuesday so we know whats what x
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Post by lisajg on Jun 22, 2007 19:05:34 GMT
Big hugs Claire x Harrison has hearing aids, although getting him to wear them is a laugh I also know a couple of other children with ds who wear hearing aids, one of them is just a baby and the other little boy I know is about 10 years old (should mention they are both great and wear their hearing aids with no problem, not like my little monkey!). Completely understand how you are feeling, we've gone through the whole grommets thing with Harrison. We were told early on that his ear canal was too small for grommets, even ended up going private and seeing Dr Sheehan (wonderful ent surgeon, he has a little boy with ds and is so knowledgable, he does lots for the DSA and has recommended the softband hearing aid for Harry, which might be the one your teacher for the deaf mentioned - trying to get one for Harry but that's a whole other story!). Anyway, Harrison saw Dr Sheehan who checked Harrison's ear canal under anaesthetic and confirmed they're too small at the mo - but this might not be the case for your little man. As mentioned by Lizzy, if you can get the grommets fitted then it might eradicate the problem anyway. Your teacher for the deaf should be able to give you lots of support and info, Harrison is lucky to have 2 teachers for the deaf and they are both fabulous! Will finish rambling on for now, I can go on a bit when I get started! But feel free to ask me anything and I'll answer if I can
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Post by maxine on Jun 22, 2007 22:57:20 GMT
Hi Dominic had same problems we tried hearing aids but he would not wear them, he was'nt keen on signing at the time either. He was saying mama dadda, etc up to 16 months then stopped, went into his own world. Failed his hearing test at 18 months had moderate hearing loss due to glue ear (due to constant upper respiritory infections). This means that all the sounds he was hearing where distorted like when your swimming under water at the pool and only hears part of words etc. He had grommets and ananoids out at 2 years old, this made a massive difference to his speech and communication. However they only last 6 months then drop out,has the ears grow, he had them replaced in May and his speech is changing again, we are hearing more normal sounding words now and he never shuts up 'talking', mine you a lot is his his own language lol. The frequency of the infections has reduced since he had ananoids out, so we are hopful he won't need the grommets replaced when they drop out. Dr Patrick Sheehan also did Dominics ENT surgery he has a Down Syndrome Clinic at Pendlebury Childrens hospital in Manchester and you can be refer via your GP or Ped. Would I have them done again if needed ---------you bet your life I would. They have micro grommets for very tiny ear drums. At Dominics last op he had one normal size and one micro in. The bone conduction aids are good but if it is due to glue ear and they can get the grommets in I personally would go for it. Dominics speech got soooooo delayed because of this hearing loss and we have got such a lot of work to do, to build his confidence back up and change the sounds he had heard and use the right words again. We are still working on the signing, because of hearing problems, speech is often delayed in DS and he still needs to communicate with others, especially his other friends with DS who may have speech problems long term. Sorry for the essay . Maxine
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Post by sarah on Jun 23, 2007 11:10:46 GMT
Hi Claire
Just wanted to tell you that we have just come back from a DSA early years course, and Dr Sheehan was a speaker there talking about hearing problems in kids with DS. He was great, so if you could get reffered then go!! (He was positivley welcoming new poeple!!) He also said that any good ENT doc would usually reccomend hearing aids first, especially if they are under about 5 years old, and then grommets later. If the children can get used to the aids then the younger the better - also if they have grommets fitted later, if they fall out or cause and infection and need to be replaced, then the kids can go back to hearing aids easily while they are waiting for new grommets, so no delay or loss of hearing for them. Hope that makes sense!! I know it seems that our children are trundling along nicely, then something else comes along... love xxx
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glght7
Junior Member
Posts: 184
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Post by glght7 on Jun 24, 2007 7:54:03 GMT
Hi Claire Danny had a hearing test done in Jan and I was told they did not think he could hear certain tones and was to be seen again in three months they talked about taking his adenoids and tonsils out but if things did not improve but unfortunately we are still waiting for that next appointment so I cannot help
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Post by claireyd22 on Jun 24, 2007 9:49:33 GMT
Thanks again for the replies. Sarah, thats made me feel alot better about it all after reading what Dr Sheehan said, makes more sense now. Thanks again x
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Post by lisajg on Jun 26, 2007 16:35:02 GMT
Hi Claire Hope all went well today when you met George's teacher for the deaf Was just going to say you can always seek a second opinion from Dr Sheehan by emailing him if you feel you want to. I emailed him several times for advice before actually getting a referral. Also, are you a member of the DSA? There was a leaflet which has been written by Dr Sheehan included with the DSA magazine last time, it was all about hearing loss for children with ds + different kinds of hearing aids x x
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Post by Rilith on Jun 26, 2007 17:35:22 GMT
Nothing to add hunni, just wanted to offer Hugs of support
(((((((((((((((((((( HUGE HUGS )))))))))))))))))
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Post by Vicki on Jun 27, 2007 19:33:17 GMT
Still waiting for Katelyn to get her follow up hearing test! Hope everything goes OK xx
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Post by claireyd22 on Jun 27, 2007 21:31:23 GMT
Hi and thanks everyone. The chap came to see us last night and explained everything about George's hearing loss and showed us lots of diagrams on his laptop (bit confusing at times). He also did some more tests of his own with the worbler (sp?). The outcome is that he's coming back on monday evening with some different hearing aids to show us and answer any more questions we may have. He was quite confident that George would be able to have them without a headband as his ear canals didn't look too small. I think we've both come round to the idea of him having hearing aids now, but don't know how long they will stay on!! x
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Post by lisajg on Jun 28, 2007 19:23:30 GMT
I'm glad it went ok for you all Hopefully you won't have any problem with George wearing his hearing aids as he is still a baby, I think the younger they are the less inclined they are to pull them off. I know a baby who got them recently and he wears them with no problem at all, so fingers-crossed. Don't want to tempt fate but this week Harrison has actually started wearing one of his hearing aids now with no problem and I've noticed the difference already as he has said a few new words!
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Post by claireyd22 on Jun 30, 2007 12:47:40 GMT
Thats good Lisa, just goes to show what they're not hearing when they haven't got them on x
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