ABR Test Results
Our day at OHSU went very well. Lilly was such a trooper, she did an amazing job. She was so patient with everyone and did everything that was asked of her. I am so proud of her!
The test showed that her Auditory nerve is working correctly. This is really good news, but it also comes with a grain of salt. If the test had revealed that the dis-connect with her hearing was in the Auditory nerve, we would be looking at a fairly easy fix. She would have been a candidate for hearing aides or a Cochlear implant. If we had gotten the diagnosis for Auditory Neuropathy or Auditory Dys-Synchrony, her testing would be mostly over and we could have decided what step was next to best treat her hearing issues. Neither of these diagnosis are possible causes because her Auditory nerve is "firing" correctly. Like I said, it is good news.
The bad part of this news is the specialists would like her to be tested for CAPD (Central Auditory Processing Disorder). CAPD is a much more complicated diagnosis and is much more complicated to treat. There isn't necessarily a fix for it. It's more of an "accommodated" type hearing issue and people that are diagnosed with it are coached/taught different strategies on how to learn/deal with it. Hearing Aides and/or Cochlear Implants have not shown to help in any way with CAPD patients. There are things that will be done for her specifically if she is diagnosed with it. All CAPD diagnosis are very individualized. The catch to all of this is that they suggested we need to wait about a year before beginning all of the testing. It is long, very in depth and can be somewhat grueling for young children. They recommend kids be 7 yrs and up for the testing. CAPD is technically an auditory processing disorder and can be present even if the auditory nerve seems to be "firing" correctly. The ABR test she had today tests sounds entering her ear, traveling through the ear and up into the auditory nerve that connects at the bottom part of the brain-stem. This test does NOT measure/track sounds, brain waves, etc after it leaves the bottom portion of the brain-stem. To have testing done that does track all that above the bottom portion of the brain-stem, you have to do the ABR test first and pass it...which is exactly what Lilly did today. Most hearing issues that are caused by a dis-connect in the upper portion of the brain/brain-stem come with a CAPD diagnosis and are complicated to test for, etc. This is why they prefer to have a child be at least 7 years old.The good news is that there is an EXCELLENT CAPD testing treatment center right here in Portland, so we have a great place to go to when the timing is right. Part of me wanted the neuropothy diagnosis simple because it's somewhat of an easier fix, but I am glad that her auditory nerve appears to be working properly at this point.
The other good news is that Lilly is really doing very well all around. She is doing great at school, she is doing great socially and is emotionally very healthy. Waiting about a year to do this testing is not going to hinder her in any way at all. We have been doing exactly everything that she needs all along.
The other GREAT news is that the staff at her school have already put into place all of the things to help her along that the specialist recommended be done for her starting from now until we start the CAPD testing. She couldn't believe that I had gotten the school to put in place any of the suggestions without having an exact diagnosis for Lilly or an IEP. She said almost ALL schools require an exact diagnosis and/or an IEP before they even offer to help a student in this way. I was already very aware of all of this, but it was so reassuring to hear it from a specialist that deals with it all the time. She stated that it is completely backwards how they run and govern helping kids with any type of learning disabaility, so she was very pleased that we were in a school that didn't operate that way. I am VERY PLEASED too, because I have had a few "lingering" thoughts about our decision to place both kids in the Charter School...they diminished as of TODAY! I now know that it was a good decision to make for our family.
One more note- when we got there, they gave us the option of attempting the test without anesthesia and if it was not successful, we would proceed with the sedation part of the test. I was somewhat surprised because they hadn't discussed this option with me before the appointment. We were all for it as long as they could assure that the test results were going to be just as accurate as if we had done the sedation. They did the test with her awake and like I said earlier she was an absolute TROOPER! They said most kids needed the sedation, but that it's always worth a shot if you think your child can go without it. I felt so guilty about starving her for 6 full hours when she ended up not needing the anesthesia after all!! Poor thing. She ate like crazy all afternoon and evening- LOL.
Well, that's it for now. Thanks for all your thoughts and prayers. We will continue our interesting journey through this hearing stuff and just keep looking forward!
The test showed that her Auditory nerve is working correctly. This is really good news, but it also comes with a grain of salt. If the test had revealed that the dis-connect with her hearing was in the Auditory nerve, we would be looking at a fairly easy fix. She would have been a candidate for hearing aides or a Cochlear implant. If we had gotten the diagnosis for Auditory Neuropathy or Auditory Dys-Synchrony, her testing would be mostly over and we could have decided what step was next to best treat her hearing issues. Neither of these diagnosis are possible causes because her Auditory nerve is "firing" correctly. Like I said, it is good news.
The bad part of this news is the specialists would like her to be tested for CAPD (Central Auditory Processing Disorder). CAPD is a much more complicated diagnosis and is much more complicated to treat. There isn't necessarily a fix for it. It's more of an "accommodated" type hearing issue and people that are diagnosed with it are coached/taught different strategies on how to learn/deal with it. Hearing Aides and/or Cochlear Implants have not shown to help in any way with CAPD patients. There are things that will be done for her specifically if she is diagnosed with it. All CAPD diagnosis are very individualized. The catch to all of this is that they suggested we need to wait about a year before beginning all of the testing. It is long, very in depth and can be somewhat grueling for young children. They recommend kids be 7 yrs and up for the testing. CAPD is technically an auditory processing disorder and can be present even if the auditory nerve seems to be "firing" correctly. The ABR test she had today tests sounds entering her ear, traveling through the ear and up into the auditory nerve that connects at the bottom part of the brain-stem. This test does NOT measure/track sounds, brain waves, etc after it leaves the bottom portion of the brain-stem. To have testing done that does track all that above the bottom portion of the brain-stem, you have to do the ABR test first and pass it...which is exactly what Lilly did today. Most hearing issues that are caused by a dis-connect in the upper portion of the brain/brain-stem come with a CAPD diagnosis and are complicated to test for, etc. This is why they prefer to have a child be at least 7 years old.The good news is that there is an EXCELLENT CAPD testing treatment center right here in Portland, so we have a great place to go to when the timing is right. Part of me wanted the neuropothy diagnosis simple because it's somewhat of an easier fix, but I am glad that her auditory nerve appears to be working properly at this point.
The other good news is that Lilly is really doing very well all around. She is doing great at school, she is doing great socially and is emotionally very healthy. Waiting about a year to do this testing is not going to hinder her in any way at all. We have been doing exactly everything that she needs all along.
The other GREAT news is that the staff at her school have already put into place all of the things to help her along that the specialist recommended be done for her starting from now until we start the CAPD testing. She couldn't believe that I had gotten the school to put in place any of the suggestions without having an exact diagnosis for Lilly or an IEP. She said almost ALL schools require an exact diagnosis and/or an IEP before they even offer to help a student in this way. I was already very aware of all of this, but it was so reassuring to hear it from a specialist that deals with it all the time. She stated that it is completely backwards how they run and govern helping kids with any type of learning disabaility, so she was very pleased that we were in a school that didn't operate that way. I am VERY PLEASED too, because I have had a few "lingering" thoughts about our decision to place both kids in the Charter School...they diminished as of TODAY! I now know that it was a good decision to make for our family.
One more note- when we got there, they gave us the option of attempting the test without anesthesia and if it was not successful, we would proceed with the sedation part of the test. I was somewhat surprised because they hadn't discussed this option with me before the appointment. We were all for it as long as they could assure that the test results were going to be just as accurate as if we had done the sedation. They did the test with her awake and like I said earlier she was an absolute TROOPER! They said most kids needed the sedation, but that it's always worth a shot if you think your child can go without it. I felt so guilty about starving her for 6 full hours when she ended up not needing the anesthesia after all!! Poor thing. She ate like crazy all afternoon and evening- LOL.
Well, that's it for now. Thanks for all your thoughts and prayers. We will continue our interesting journey through this hearing stuff and just keep looking forward!
posted by Pat and Laura Potter at
9:23 PM
2 Comments:
You are one smart momma, Laura! Never second guess your mom instincts or intuitions. You have good ones! You ALWAYS make the right decisions especially when it comes to your family! :)
What a great story, I am so glad things went well, but I am really glad to hear the school is doing good. You are a wonderful Mom and Lilly is a sweet girl, God bless you all. Love JoDell
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