Kelson had his second appointment with the audiologist today and had another ABR (Auditory Brainstem Response) test. They want him to sleep through the test so we are to bring him hungry and awake. He wasn't real interested in falling asleep at first, but gave in eventually.
They put electrode type things on his forehead and behind his ears. Then they put a tool in his ear that makes different noises. I'm not sure what exactly is happening but I can hear a difference.
We got pretty much the same results as we did at our last visit. It appears that Kelson's ear is working but his brain is not responding in a synchronized way. I asked the audiologist what exactly that meant and she compared it to a radio that wasn't quite set on the right station. You can understand part of what is being said, but there is a lot of static.
Apparently Auditory Nueropathy is not a real common thing (much like the other issues that Kelson has already proven he was too tough for, like they hydrops and they chylathorax). We visited with a lady at ECHO today that has worked with other patients with this diagnosis and she said she had worked with 8. All of them had different challenges associated with the auditory nueropathy and different things helped them to cope with it. Some have hearing aids, some have had cochlear implants, some use American Sign Language some use cued speech. Each child is different, and as much as I hate the idea of waiting, that's all we can do right now. Hopefully Kelson will mature out of some of these issues, and if not, we'll just have to figure out what works for him.
We also got a call from Early Intervention today (FINALLY). The coordinator will be coming Friday morning to meet with Trever and me. After that we will meet with a therapist to determine what types of therapy Kelson needs. We have been recommended for speech and hearing help as well as developmental help. They will work with Kelson on these things, but they will also help our family and friends to get the resources that we need to work with Kelson. If we need to learn sign language, they will help us get the resources we need. They will work with Claire for ways to play with Kelson to develop his communication.
This is just another hiccup that we'll overcome together.
Monday, August 27, 2012
Auditory Nueropathy
Subscribe to:
Post Comments (Atom)
7 comments:
Darn. I was hoping things had begun to develop. Glad to hear the early interventionist is coming soon. Thanks for letting us know.
Carol B
Thanks for the update and you know we will learn whatever it takes to be able to help K with whatever! Remember my sister-in-law graduated with a degree in deaf education!!
Ria
Im so glad you have put a few updates on here!!! Max is currently seeing the early intervention group, I think you will really like it. Max has exceeded all expectations (Much like Kelson!) so he doesnt need much, but they are a great resource to have around! Glad to hear you are all doing well!
Thank you for keeping us updated on Kelson and the rest of the family. Keeping all of you in my prayers that you will get the help you need when needed.
Elaine
It's never too early to start ASL. Baby books of sign are readily available. My totally deaf grandson, who will be sixteen in Nov., has been in school since he was two and is now a senior in H.S. Kelson is a wonderful baby and with the family support that he is going to get, he can do anything.
Krista's dad's cousin, June Z.
He's a tough little guy and a fighter! Whatever happens I know that he and the whole family will excel through whatever challenges lie ahead.
I know a boy on my caseload at school with auditory neuropathy. He speaks well and understands it well and uses hearing aids. I'm certain that with the right therapies, Kelson will grow up and be able to communicate in whatever mode works for him! The great thing is that you guys are getting him the help he needs now--that's HUGE!
Post a Comment