Monday, December 29, 2008

Drumroll, please!


Well, Seth's appointment this morning went really well, but it was intense. Recently, there have been some new developments with him that have led us to a new, slightly different diagnosis. There were a few things that just didn't fit in...namely that he passed one type of hearing test (the OAE...otoacoustic emissions test) repeatedly while flunking the ABR (Auditory Brainstem Response Test), and that every once in a while, Seth would seem to hear, and even search for voices, even when he wasn't wearing his hearing aids, which freaked me right out, of course.



Turns out he has something called Auditory Neuropathy. If you picture a cord twisting and causing a short, then being untwisted and working again, or a cell phone losing reception then regaining it, that is sort of what Seth has. Yes, that was very simplistic. =) Basically, sometimes he can hear us, but most of the time, he can't. Explains all the weird responses we've gotten, and having present OAE's and absent ABR's is kind of a hallmark of this disorder.



Our treatment plan is the same...Seth still can't hear most of the time (He tested in the booth between 90-110 decibels unaided, and in the 70s-80 dB range with his aids in. Speech is around 20-30 decibels, so much quieter than he can hear). Cochlear Implants tend to work well for kids with AN...it bypasses the area that is shorting out, so to speak, and creates a clear signal.



So our plan is the same, Seth just had to go and throw a little wrench in the planning. Apparently, he doesn't want to be a text book case, as usual! But he was a rockstar at the appointment, charmed everyone, and we are very excited to be moving forward in this process.



In the short term, though, Seth, once again, has fluid in his ears. It has gone away and come back a couple of times now, never causing an infection, but they cannot implant him with fluid in his ears, and since it has been recurring over a couple of months, it is a concern. We go in next week to determine if tubes are in his future.



I would really, really, really like to avoid surgery. If we have to, we have to, but I hate when he has to be sedated. So if you could all be praying for the fluid to go away and stay away, that would be awesome! If they implant with fluid, it can lead to infection, which is very bad.



I will be back to post about our awesome weekend and how I finally got to go to IKEA later!

6 comments:

Julie said...

I'll be praying!

Kristina Petrella said...

I'm so happy the appts. went well! Of course nothing can be simple as far as diagnoses are concerned.....:-) We will be praying that the fluid dries up! and quickly!!!!!

Les said...

Woo Hooo! So excited I won! I never win anything. And more excited to hear the good news from the dr. visit. That is crazy that he can hear sometimes! Will be praying about the fluid issue.

Kara said...

Showed Jeff the picture of the bracelets and he said "Nice... when do I get one?". I agree. :)

Anonymous said...

My youngest son had tubes put in his ears at 8 months b/c the fluid in his ears never went away. He had 6 ear infections in the first 8 months of his life. I didn't want surgery for him at such a young age, but it became necessary. I just wanted to reassure you that it's not too bad just in case Seth needs tubes.

by: Allison said...

I just found your blog and wanted to let you know your family is in my thoughts and prayers. Three years ago my husband and I were blessed with our second son. Our son was born with
Microtia meaning little ear. He doesn't have an ear canal and will never be able to hear out of his left ear. This has been a challenge for me because I felt like I did something wrong. I know different now, but it's hard.
Keep your head up and I hope all the blessed for you and Seth.
Our blog website is:
www.jansens-journey.blogspot.com

Allison

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