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Post by kellyd on Jun 9, 2006 15:15:42 GMT -5
Hello, I was wondering if anyone has any advice or comments that they can share with me. My daughter just turned four and recently received a pair of hearing aids that fit behind the ear. She has a severe hearing loss and can only hear about 20%. She does not have glue ear but instead her nerves with in the ear are damaged. Our problem is that she will not keep the hearing aids on. First of all it takes two adults to actually put them in. One of us holds her hands while the other one fits the mold in her ear and once we have managed to put them in she pulls them out immediately. We usually put them on when she is watching television so that she is somewhat distracted. She also has a sensory problem so to keep them in her ears is a real struggle. Does anyone have any suggestions on how we can get her to keep them on? Or would you know if there are any alternatives to the behind the ear aids. My cousin was telling me that there is a type of system that involves wearing headphones and a box around her neck. I was really hoping that there would be some type of hearing aid implant but I don't think there is for this type of hearing loss. Any help would be greatly appreciated. Thanks......Kelly
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Post by MaggiesMom on Jun 10, 2006 18:45:47 GMT -5
Kelly, So sorry I've been away again. Anytime you have questions about hearing aids, or hearing loss, please feel free to write me. If you click on my name, you can send me a personal message and I'll send you my email addy. Maggie is 5 and has profound sensory neural loss in her left ear and moderate/severe in her right. We just found out in March that she also has Auditory Neuropathy. First...check with the audiologist that did her testing and see if she's had an ABR. That's a test they have to do while the child is asleep or sedated. That can tell them if she has Auditory Neuropathy too. If she does, that could be a good reason why she's pulling the hearing aids out. Auditory Neuropathy or Auditory Dysynchrony (AN/AD) makes everything sound "fuzzy". Basically like a radio that has static on it. Yuck! Make sure you ask specifically about AN/AD. Many children have to get a cochlear implant to be able to hear with AN/AD. Not always, but it seems to be the consensus these days. Maggie has had the best digital behind the ear hearing aids since she was 4 months old. We fought with her for 2 years to keep them in her ears, even making her ear a specially designed hat so she couldn't get them off. But, then we learned that her left hearing aid was so loud that it was interfering with the right ear. An echo so to speak. Finally we found out about AN/AD and learned that hearing aids just aggravate some children. I know when Maggie's audiologist turns Maggie's hearing aid up to get more speech sounds, Maggie can't deal with it and we have to turn it back down. Maggie is now being tested to see if she is a candidate for a Cochlear implant. It took us three years to get a doctor who was even interested in testing Maggie for AN/AD. Our auditory verbal therapist told us three years ago she thought Maggie had AN/AD. It's very frustrating dealing with hearing problems in the first place, but to go to three different hospitals to seek testing and still get no help, that's ridiculous! All that being said, if you can try getting the hearing aids in her ears for short periods of time, especially when she can hear that it makes a difference, then she may start to tolerate them better. We made it a point to sing Maggie's favorite songs...thumbkin, itsy bitsy spider, etc. and boy she really listened! we also played games and other things to get her attention. TV never worked with Maggie. She love to watch it, but it didn't keep her distracted enough. That's one of the big things an auditory verbal therapist teaches kids...how to listen. Make sure there isn't a lot of background noise. Hearing aids amplify everything...the tv, the dishwasher, the road noise in a car, etc. Maggie still can't tolerate some situations like in the car or in large stores. Too much noise. Tell your audiologist exactly what the problem is and ask if he/she can adjust them so they aren't too loud till she gets used to them. It's easy to turn them up a little at a time. Does her hearing aid have a volume control on the back? Maggie's doesn't. But if it does, then you can turn it up or down yourself. It may just take time for her to get used to them. Do you use Otoease? It's a special lubricant to help the ear mold slip in without hurting. That could help too. Good grief, there's so many things that could go wrong or right! Try some of those suggestions. If that doesn't work, write me and I'll try to come up with some more. There are some good websites you should check out... www.listen-up.orgwww.medschool.lsuhsc.edu/Otorhinolaryngology/deafness_article1.aspThere are a couple of good support groups on Yahoo too. Hang in there. It does get better! Robin M - Maggie's mom
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Post by kellyd on Jun 23, 2006 7:15:23 GMT -5
Hi Robin,
Thank you so much for your comments. I am not sure if Talia has Auditory Neuropathy. We have an appt in three weeks with the ENT specialist and I will have to ask her. She has had the ABR test where we had to sedate her and that is how we figured out that she has a severe hearing loss.
I like your suggestion in using Otoease. I have never heard of that so hopefully I can locate some because I live in Malta (Europe) which is small island. If I can't find it here than I will try locating some in Toronto where I am originally from.
We plan on making an appointment in Toronto with another ENT specialist to find out more about this pocket talker. Perhaps Talia would tolerate wearing headphones as this might not be as intrusive as wearing molds.
She currently has the smallest behind the ear hearing aids available with a volume control. She has very tiny ear canals so she tends to get a lot feedback if they are not in place correctly. They also tend to flop over her ears so when we do manage to put them in her ears we have to tape them to her so they stay in place.
I will certainly check out those websites that you recommended.
Thanks again......Kelly
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