A couple of weeks ago, I finally took Mia in for a hearing test/screening at Children's Hospital. Five minutes in to the appointment I knew it was a mistake - the doctor had never heard of JRA or how it can affect one's hearing. When I mentioned Mia's diagnosis the doctor responded with, "Oh my! What is that??"
Great.
After bringing her up-to-speed and giving her a brief rundown on the ins-and-outs of JRA, she did a screening on Mia's ears, said she was "normal" and everything was fine. I was mad. I knew there was something else going on with her ears and has been for a long time. Mia's ears are so sensitive that there are times when she is even bothered by going from inside of our house to the outside. The sound change immediately sends her hands up over her ears. There have been times where a nature program has been on the television in the other room and the sound of a bee "buzzing" on the television has totally bothered her ears....and she was in a totally different room!
I mentioned to her what another JRA mom had told me - that there are three bones inside your ear and sometimes the arthritis can affect those bones which, in turn, affects one's hearing. She said she had never heard of this, but that it was "very interesting" and she would "look it up."
Before leaving the office completely frustrated, the doctor told me to hold on a second. She returned 10 minutes later and handed me a piece of paper and said my daughter is "hyperacusis*." When I asked her what it meant she just said very slowly, "HYPER-A-CU-SIS!" (Like I am an idiot). I looked at her and ever-so-politely said, "AND THAT MEANS???" That was when she referred me to several websites listed on the printout and told me I could get more information there. Um, sorry. Aren't you the hearing specialist?? Shouldn't you know what this means and be able to give me a quick definition...or a few helpful tips on what I should do? Trust me, we've seen enough doctor's with Mia that I can easily tell which ones are legit and which ones are full of crap.
Bottom line: While just maybe this might be what Mia has, don't you dare try to put a label on my daughter and "diagnosis" her just for the sake of giving her ailment a name...and then not tell me what the disorder is!
The next day, I made an appointment for her to be seen by my youngest son's ENT at the end of April to get a second opinion. In hindsight, we probably should have gone to him in the first place.
*For more information on "hyperacusis" you are going to have to "google it." That's what I had to do. Bah!
