Hearing Loss

Jenn - posted on 06/13/2009 ( 8 moms have responded )

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My 5 year was born with moderate to severe hearing loss, he just lost more hearing and is at severe to profound. May be a candidate for cochlear implants. Any thoughts or suggestions as we figure this out? CT Scan scheduled for Monday and follow up due the following week in Boston Children's Hospital.

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Geralyn - posted on 07/04/2009

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There are auditory/oral programs out there that provide for intensive auditory training and language development. Children typically attend these programs through an IEP. Depending on what the public school has available, you may have to find a private school program. Some school districts think that once a child is implanted, all of a sudden they can hear and they do not need intensive therapy. While a relative few may not need intensive assistance, your child needs auditory training, speech-language therapy and an educational program that supports the auditory/oral approach. This will allow your child to learn to interpret the sounds that he will be receiving through his cochlear implant. Just some thoughts...

Sarah - posted on 07/01/2009

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My son was diagnosed with profound hearing loss on both sides at four months. He has had cochlear implants put in on both sides when he was seven months. He is now thirteen months and is receiving special instruction to help him learn to use his found hearing. Please let me know if you have any questions. Good luck

Jennifer - posted on 06/29/2009

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Hi Jenn,
I'm actually an HI teacher and mother of an HI teenager. My daughter was implanted at 7 years of age when her HA's weren't getting her the information she needed anymore ( she started to plateau). Anyway, she is now going to be a junior in HS (even though I'm far too young to have a HS student....where did the time go??) and is completely mainstreamed. She hears very well (doesn't always listen though which is irratating...I wonder if they have an implant for that??) and has beautiful speech (she had pretty good speech before the implant but it did improve greatly after). She talks on the phone (she's even heard what was on the car radio while I was talking to her on my cell phone). If you are willing to put in the work (it is not an instant fix and requires lots of frontloading work for a huge payoff in the end) it's an amazing device. What type of device are you looking into, I've worked with Clarion and my daughter and most students have Cochlear (Freedom)....I'd be happy to help however I can! Good Luck!

PS. The surgery was pretty involved 9 years ago but I had a student implanted last year and it was out patient!!! Couldn't believe it! I think for the little guys they would keep them overnight (or I might insist!!). The scar is minimal (behind the crease of the ear so you'll never see it!!). It's scary, as any time your child goes under will be...but like I said the payoff can be huge!

Jenn - posted on 06/29/2009

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Hi Marci, my son has very good speech as he has had heraing aids since 3mos of age. We are now trying to keep his speech in tact while moving forward to understand why he lost more hearing suddenly with no obvious reason. We meet with the CI intake team in Boston, MA in Aug. He is getting new hearing aids this week while we wait for the CI decision/process.

Marci - posted on 06/27/2009

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Forgive me in advance for being lengthy. My 4 1/2 year old was diagnosed as being profoundly deaf bilaterally at 15 months. We started the process at CHoP for cochlear implants. At the time, CHoP was only implanting unilaterally. Time is of the essence. If you want your son to be auditory/oral as his primary mode of communication, then I highly recommend it. We eventually pursued another CI at a different implanting center in NYC. Be advised that CI's will destroy any residual hearing, but since my son was diagnosed with Connexin 26, that was not an issue with us. Wow, I could go on and on. Read up on Carol Flexer and Auditory Verbal Therapy. Remember, your son will not speak automatically. It takes A LOT of hard work. Be prepared. If you have any questions, I would be more than happy to answer them to the best of my ability.
E-mail is: artworksbymarcine@hotmail.com

VERY IMPORTANT: There is a cochlear implant convention in Sturbridge MA July 11-13. Please inquire. (Minuteman Cochlear Implant Club.) It would be VERY helpful for you and your hubby to see and hear the difference....

I wish you and your family all the best--Marci

Penny - posted on 06/20/2009

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my daughter is 7 when she was 3 she was implanted in 1 ear it has been great she is talking now and she attends a main streem school with her hearing brother i would recommend the cochlear implant good luck

Jenn - posted on 06/19/2009

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Thanks Jen, I am really looking to understand how involved the surgery is. I have a picture in my mind of his head being cut open (I am sure that is not the case). He has had hearing aids since 3mos of age, I am concerned that he is able to hear again right away

Jennifer - posted on 06/19/2009

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My youngest son was diagnosed at 5 weeks with profound hearing loss. He received bilateral cochlear implants at 1 yr and is now 2 1/2 and doing wonderful with them. We have a blog we started when he was first diagnosed. www.buzzsjourney.blogspot.com

Any particular questions I'd be glad to help if I can.

Jen

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