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Post by catseye on Jan 26, 2004 11:11:19 GMT -5
Anyone else have a hearing impaired child? Or any experience with hearing aids??
My sd8 got hearing aids last october, I think they are called CIC, they go in her canal, and are very small... They have these little antenna type things hanging out of them, that are rubbing on my sd's ear and causing sores... I tried putting a little piece of cotton under the "antenna" (fish line type material with a ball at the ends), but that doesnt stay or work very well... Any other ideas??
She does have an appointment in 2 weeks, just thought someone may have a suggestion until the appointment?? Thanks if you can help
cat
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Post by AnneM on Jan 26, 2004 14:14:20 GMT -5
Wow Catseye ... I myself am hearing impaired and wear hearing aids in both ears ... BUT I am not familiar with the antenna type things !! .... What are they meant for exactly??
In my own experience it is NOT the hearing impairment that is the BIG problem (although that IS very annoying!), nor the hearing aids (which hurt and irritate to start with but after that I am honestly not even aware they are there!) ... but it is the dizziness and loss of balance which goes along with any "inner ear disorder" ... I find this the most troublesome part of it ... Is your sd's ear problem in the inner ear or the middle ear?
I know I am not much help because I am NOT a young child dealing with this like your sd !... but if I can help any further just please let me know!!
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Post by catseye on Jan 26, 2004 14:30:15 GMT -5
I wish I knew  ... I think they are just for something to pull on to remove the hearing aids... As I said they go way down in the canal of the ear, so they wouldnt be easy to get out without those little antenna looking thingy's LOL.... Basically what has happened, is sd had tubes put in her ears, before she was 1 year old (because of constant ear infections so I am told)... Sd was to be brought back for follow up care after the surgery, and her mom (before I got involved with sd), never took sd back to the dr.... When I met sd she always had this awfull stinky drainage leaking out of her ears... I got fed up and took her to a specialist.... This specialist has tried to correct sd's ear problems, with surgeries (4 the poor girl!!), and medications... Apparently when sd's tubes fell out (way too early but was never caught thanks to her mom grrr..), they left holes in her ear drums... Since sd has had so many surgeries, he wants to wait a while before any other attempts to correct the holes in her ear drums... The hearing aids are to help until some surgical procedure, can hopefully cure her.... Long story short yes I believe it is considered inner ear... "conductive hearing loss" they call it... I wish I knew how to make an attachment maybe you could figure out the report they gave me!! LOL Basically one ear ranges from 50-40 decibles in the 500-4000 hz range... other ear is better 50-20 decibles in the same hz range... ( I hope all that made SOME sense)... I am still struggling with alot of the dr's big terminologies (apparently he doesnt know I am a TRUE blonde?? LOL)... Oh and I found what the hearing aids are actually called they are "bilateral cic aids"... Another ok sure doc! (like I know what he is talking about)... Can you tell I am very excited to find someone who may have a clue about hearing problems?? LOL cat |
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Post by AnneM on Jan 26, 2004 15:42:52 GMT -5
Poor Little Girl !! ... She has certainly been through the mill with all those surgeries based on neglect by her bio-mother ... Oh Catseye she is so lucky to have you now!!
One thing to be aware of is that if you have an inner ear problem - you have what is known as a "vestibular disorder" ... this affects not JUST the hearing but often (if not always?) the balance mechanism as well .. For years doctors would simply give me a couple of "hearing aids" and ignore the other problems I was having ... it wasn't until I was sent to a very good consultant that my severe balance problems were also recognised ... (not cured but certainly recognised and helped) ... so my largest slice of advice really has to be to be aware of this ... because it DOES go hand-in-hand with inner-ear (vestibular) disorders of all descriptions....
A "conductive hearing loss" is different however from my own hearing loss - (in my case the nerve endings of the inner ear have basically died - were killed in fact by a virus which hit me at 21 years old) ... A "conductive hearing loss" still affects exactly the same part of the ear but the reasons and "type" of hearing loss are different ... In my case it has resulted in a high frequency loss which means I cannot differentiate consonant sounds (i.e. "b" and "p", t and d all sound the same!!) ... but I am pretty near normal on consonant sounds ... so if you say "Bar" .. i will struggle on whether you said Bar, Tar, Par or Dar ... (if there is such a word as Dar !! hee hee!) It also means I cannot hear a whistle or anything high pitched and I struggle hugely with children's and often female's voices ... (A deep voiced man is normally NOT a problem!!)
However, (and I am not 100% sure here) I believe a conductive hearing loss like your sd has is a loss of the hearing through the bones (rather than in my case the nerves) ... (which we get a LARGE amount of our hearing from ) ...
Now .. the decibel hearing loss statistics you gave are not too clear to me (because i have never taken much notice when they have described my hearing tests ... I have sort of said "yes, yes, I know ... I have had heaps of hearing tests and I KNOW I cannot hear many sounds" ... but (shame on me !) I haven't really listened to the details...
HOWEVER, i am due next week for my 6 monthly visit to the specialist ... and I will listen much better this time and I will actually ASK him what the difference is betwen a high frequency loss and a conductive hearing loss and see if between you and I we can help figure out more about what this means to your sd!! (because I know what you mean by the jargon they use !! ... and I should be used to it by now ;D)
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dfp
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Post by dfp on Jan 28, 2004 20:29:11 GMT -5
My 7-year old son has a moderate hearing loss like your sd, but his is "sensorineural", (nerve damage) as opposed to a physical problem that restricts hearing (conductive loss). He has worn hearing aids since he was 6 months old. (My other son did the tubes route 2x) A couple of things hit me. First of all it is VERY unusual/ not recommended to put CIC aids on a young child if for NO other reason than money. I'll explain: My son wears behind-the-ear aids mostly because his ear size changes so often that he grows out of the earmold (the part that goes into his ear canal) 2-4x A YEAR. It's much cheaper to replace a $35 earmold 4x a year, than have to replace the whole hearing aid 4x a year. On an 8-year-old you should expect her to need sizing changes at least 2x a year. (They say kid's ear size changes about as often as their shoe size does.) My guess is the problem you're running into is that she's grown out of her hearing aids. Otherwise they would be fitting more snugly and that little sticky-outy thing wouldn't be rubbing. The best way to see if there's something you can do about the fit is to call the audiologist who dispensed the aids. Really you should get your money back, but barring that, they should do something to help the fit. If they give you a hard time, find a new one. There are lots of great ped. audiologists out there. Also, if ds is not seeing a pediatric audiologist for fittings/testing/ etc, she should be. It's quite complex to fit children optimally, and experience has found that those who do not work with children specifically often make pretty big errors. If you join the Listen-Up listserv other members in your area can probably suggest someone good to work with. Forgive me for saying this but I don't know who suggested sd get CIC aids, but if an audiologist did, they should probably be fired. They gave someone bad advice. I don't know about your sd's aids, but my son's cost $5000 for the pair and we would have been $5000 out if we got CIC aids and he grew out of them 4 months later. One place where you can get EXTENSIVE information on kids with hearing loss, including explanations of all the terminology, suggestions for school, descriptions of technology, etc. is the very wonderful website www.listen-up.org. It's run by a mom who's son is deaf, and has had input from lots of great parents. There's an associated online listserv, kind of like this one, which has been an absolute godsend for me through the years. I'm sorry you're having to go through this. It sounds like a big mess all around. I'm happy to help with any other terminology/technical stuff if you have any other questions. GOOD LUCK! dfp |
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Post by catseye on Jan 28, 2004 20:52:58 GMT -5
OH MAN!!! Somehow I didnt think those little "pea size" things would be a good idea for such a little girl....  The CIC's were recommended by the actual dr who has been treating sd (and doing her surgeries) for the last 5 years... We took her accross the hall to another office, for the actual hearing test, and they gave me the report... The lady who did the testing was surprised when I told her of the dr's intentions to use CIC's... I guess at 2,500.00 (which was quite a squeeze), I now know why those were his suggestion... Anyway the lady who did the testing thought the "out of ear" (whatever that meant I suspect what your son wears though), would be better for my sd... I guess I should of listened to her and not the dr... What a waste of money! GRRR Thanks for the honesty! I so appreciate it, even if it means we were a bit taken advantage of for not doing our own research a bit first... It just happened so fast, and because sd is in school, we wanted whatever was needed as quick as possible... cat |
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dfp
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Posts: 57
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Post by dfp on Jan 29, 2004 9:17:41 GMT -5
I'm really aggravated on your behalf! For some reason that I cannot begin to understand, it seems like most ENTs know NOTHING about hearing loss and hearing aids. I know that sounds kooky but I have endless evidence.
I am SOOO sorry that this happened to you. Often when you buy hearing aids there are some kind of fitting & performance guarantees-- I know that when my Dad got hearing aids they told him that in the first year he could come in for unlimited fit adjustements at no charge-- maybe that's something that you can do?
And maybe it's possible, if the audiologist is good, for them to suggest something to build up the shell of the aids to make them fit better?
Keep us posted. And join Listen-Up-- really, they're GREAT.
Good luck.
dfp
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