Our CHARGE kiddos sure keep us guessing, don't they?! Ben hasn't been wearing his cochlear implant AT ALL since he was sick this during the winter. For the past month, we have been working on Ben wearing his implant while it is turned off to get him use to having it on so it could at least be programmed. On Monday, we had our first appointment to remap his implant since he stopped wearing it. It also happened to be with the new CI Audiologist. He was wonderful and had a lot of background information because he use to work with both adults (who can tell him what the implant is doing and feels like) and kids (who can't always tell you).
He tested the electrodes on the implant and they showed signs of not being stimulated (no surprise there, he hasn't been wearing it). He then went through five different electrodes and got some high/low thresholds. From that, he remapped/reprogrammed Ben's implant. We are basically starting all over at a very low volume to get him use to it again. What he hears will be a very soft whisper and we will gradually step up. Ben was happily wearing his implant in the office after the new programming. I was thrilled! When we got home and after Ben's nap, I tried the implant again. Ben was fine when I put it on UNTIL I actually turned it on. He then pulled it off and started crying. He acted like he was in major pain. He wouldn't let me even get close to him after that with the implant in my hand. So confusing! It was like he got a shock when it was turned on. We talked to the Audiologist and we are stumped. We are going back in next Monday to try again. Could the implant sound different when hooked up through the computer (which is how it was in the office) vs how it sounds running on battery at home?
4 comments:
Aunt Jen said...
Huh....that is really weird. My guess is something was set up wrong at the office. It's not like Ben to react that way and so it will be interesting to see what they say on Monday. I will ask Sara since she is an Audiologist at Children's. Maybe she can answer your question in the meantime or provide some other explanation. :)
Not sure what could be causing this, Amy, but Katie occasionally has the same reaction to her implant--like it causes pain or the sound is really disturbing to her.
Julie Brandrup told me earlier this year that her daughter was showing a lot of aversion to her implant, and they had the Cochlear rep test the "integrity" of the electrodes, I think it was called. It turned out that several of Adele's electrodes weren't working any more, so they had to shut them off. We had Katie's CI tested for this too this summer, but her electrodes all appeared to be working normally. Just something you might want to ask about, though.
I don't know anything about Cochlear implants but I hope you all find out what is going on!
I am sure you will ;)
God Bless,
Brian, Sarah, and Caleb Hlebiczki
Julie told me the same thing at the conference how Adele was not likeing her implant anymore.
We do not have one, even tho after talking to a new audiologist and ENT we might get new answers. WHO KNOW!
Good luck and I hope you get some answers soon.
Hugs,
Crystal and Eva
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