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Post by vickia on Apr 13, 2008 11:01:50 GMT
Hi guys. How is everyone? I haven't been posting recently, although I do pop in every now and again to read. Hope you're all well, and congrats to all the new arrivals due shortly. Anyway, just wanted to see if anyone had any info for me!
Thomas has had hearing aids since february this year and they have NEVER fitted him properly! The molds they take of his ears have always been either too small or just badly fitting (the wrong shape etc.). We've now had 7 sets!! of molds (each set of molds means a trip to the hospital for impressions and then 2 weeks later we go back to pick them up) which haven't fit. The hearing consultant that we see has now said that its probably not worth persuing hearing aids like these due to Thomas' ears being an odd shape. Apparently its very common in children with Downs (not that I can see anything wrong with his ears....)
Anyway, they have now decided to get Thomas a BAHA (bone anchored hearing aid) on a soft band around his head (so not actually bone anchored). We'll have to wait a few weeks for this due to the expense of these BAHA's but I was just wondering if any of you guys had any experience of them? I'm not sure Thomas will tolerate a band :0(
Any info would be much appreciated.
Thanks
Vicki & Thomas xxx
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Post by lisajg on Apr 13, 2008 16:02:09 GMT
Hi Vicki, That's a bit spooky because I was about to post something about the BAHA softband myself! I'm going through similar with Harry, we've had a spell of really rubbish ear moulds which has made it difficult to wear his hearing aids recently + he now has eczema in his ears which is making it even more difficult to wear his hearing aids as they are so sore. We really want him to have a BAHA softband now because of the probs we are having, but our children's hearing service has been refusing to pay for one because they said it is too expensive, I'm having to really push to try and get one, even my local MP is involved now! So if they are offering one for Thomas then I would snatch their hands!! He may not tolerate it but it's worth a go. I saw a little boy wearing one when we went on an NDCS/DSA weekend a couple of weeks ago and he was tolerating it fine. I've been told that it often works better for children with ds, because quite often they don't like conventional hearing aids because their ears are very sensitive. Would be great to hear how Thomas gets on if you manage to get one, I'll let you know if we manage to get one for Harry. We've also been asking a local charity if they will fund one for Harry if our local hearing service still refuses. Good luck with it, I've heard they're really effective to use for children with glue ear until they're big enough to have grommets. Love Lisa & Harrison xxxx
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Post by claireyd22 on Apr 13, 2008 19:32:20 GMT
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Post by vickia on Apr 15, 2008 10:48:33 GMT
Thanks guys. I'll have a look at the link. From what I've read it seems that they are actually better than normal aids (if he'll keep it on! lol).
The lady at the hearing centre said that they would need funding for Thomas' baha so she would ask his ENT consultant to write off for that but in the mean time she would order him one in anyway!! She was absolutely certain that he could have one though!
Lisa, it seems really sad that you have to fight for one for Harrison. He should be just as entitled to one regardless of how much it costs. I know it does make a difference where you live and we sometimes miss out on things because of that but I suppose we're lucky with this! Keep fighting - he deserves all the help he can get to help him hear properly.
I'll keep you updated when we get it!
Vicki xxxxx
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Post by lisajg on Apr 20, 2008 7:57:38 GMT
Everything is a bit of a postcode lottery isn't it, we have had moments when we've thought it may be worth moving when we hear about better services in other parts of the country but I guess wherever we live there will be advantages and disadvantages.
Vicki, I'm really pleased Thomas is going to get the BAHA softband and that you're not having the same hassles as us, will be good to hear how Thomas gets on with it. xx
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Post by lisajg on May 2, 2008 20:43:40 GMT
Well I took Harrison to see the hearing consultant today and we sort of have a bone conduction band for him, if you can call it that! Because they don't want to pay for a BAHA softband they asked me to buy a headband and they have made some alterations to a body worn bone conduction hearing aid and made their own version! Yes it's true, I'm not making this up although it's probably hard to believe!!I'm not convinced it is going to work but will give it a go. At least Harry looks quite cute in his headband, we got one with a skull and crossbones on it because all the others were a bit girly so he looks a bit like a pirate!
Anyway if this doesn't work they said I may be able to get the kind of BAHA softband I want through adult hearing services because apparently they have funding. It means getting referred again and they said it takes about 18 weeks which according to them is really good! Grrrrrr, makes me so angry that everything always comes down to money, wish I had the money myself so that I could just go ahead and buy one.
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Post by claireyd22 on May 3, 2008 12:01:04 GMT
Omg Lisa that is terrible, I can't believe they can be so tight. Why can't he have a baha band? It doesn't seem right that they can say no when he needs one and the bands actually exist for children. Could you get your local councillor get involved? Feel really angry for you xx
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Post by lisajg on May 4, 2008 16:55:25 GMT
Must admit I'm pretty livid about the whole business. I wrote a letter of complaint a month or so ago and sent copies to lots of people, including my local MP, so he's now involved. I also asked the DSA if they would help and they wrote a fantastic letter of support too.
Having said that, the good news(!) is that to my astonishment this bone conduction aid which Harry has been given seems to be working, he has only been wearing it a couple of days but seems more responsive to different sounds, it's still not ideal because it has a wire which Harry can pull at and the parts are velcroed on so easy for him to pull off. The BAHA softband we want is still going to be much better so I'm going to keep pushing for it, in the meantime at least we've got something xxx
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Post by debs4 on May 5, 2008 13:37:39 GMT
Cant believe you have to fight for one. If its going to benefit Harry he should be entitled to it automatically no questions asked. I get so angry that we have to fight for everything for our little ones. I hope you get it sorted soon. xx
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Post by vickia on May 22, 2008 13:48:05 GMT
Thomas finally got his BAHA band yesterday!! Yipee!! He's still a bit fussy about wearing it but he will now tolerate if for a up to 20 minutes without taking it off which is a good start! He seems to be able to hear better already because he's looking around really wide eyed! lol. Hopefully he'll do well with it. I'll try to post a picture of him wearing it in the picture gallery. x
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Post by lisajg on May 22, 2008 19:25:41 GMT
That's great news Vicki, let us know how it goes and would love to see a piccie. I took Harry to an appt with the ENT consultant today and he said he will now order one for Harry, he said it will be 'fast-tracked' so hopefully we won't have to wait too long! The diy version which we had has stopped working after only a few weeks! The good news is that my MP is outraged that there is no budget in paed services for this in our area and he sent a letter to say it's not satisfactory and he's taking this to a higher level to make sure things change. So maybe all my whinging and complaining will achieve something for once, lol xxx
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