Thursday, November 8, 2007

BAER Results

Basically stable--it's bad in both ears. Interstingly enough, Evan did show some improvement with bone conduction, which he has never demonstrated before. So his unaided threshold with bone conduction is at the level of a vacuum cleaner, as opposed to a lawnmower with air conduction. So we are back to trying the bone conduction hearing aid (we tried a loaner one with him a few months back--didn't seem to make any difference although he was battling ear infections at the time).

With these new results, Evan is not a candidate for a cochlear implant. Just like that--nothing about his hearing has really changed. We just got this unexpected result and suddenly the ENT who does CI wouldn't want to do it. Not that we were pushing to get him implanted, but we would like to put the idea to rest one way or the other. Evan's hearing loss has him borderline as a candidate, and the lack of progress with hearing aids could have been a factor. Now, suddenly, we have this whole new category of hearing aid to pursue before we can finally decide yes or no on the CI.

It reminds me of a situation with a young adult with Down's who was receiving services because of "mental retardation." To qualify, the IQ has to be under 70--it had been in the high 60s several times throughout life the test was administered. In high school, the student scored a 72, so all of a sudden didn't qualify for some of the same services. The mother was incredibly frustrated--it wasn't like the person's level of functioning was any better with an improvement of 5 IQ points, as the student was still on the life-skills track. Just as she matured, had become better at taking the test (things like recognizing patterns--that didn't have direct bearing on daily living).

We are also continuing to pursue a CT or an MRI to really look at Evan's nose and rule out choanal stenosis (narrowing of nasal passages on one or both sides). Choanal atresia (failure of the passages to open into the back of the throat) is very common in CHARGE--one of the diagnostic criteria in fact. Often, a child will have either choanal issues or a cleft palate--so since Evan had the soft cleft we always figured he didn't have any stenosis (we know he doesn't have choanal atresia because he's had tubes passed through both sides of his nose too many times to count). The reason why we are so interested, because the list of signs and symptoms reads like an exact description of Evan--constant goopy nose, recurrent ear infections, fluctuating hearing.

Evan's team at Children's is supposed to discuss this on Monday--it would be nice to get this diagnosed and hopefully treated so we can finally feel like we have a plan. The past year seems like it was nothing but waiting--very frustrating!


Leslie, Arlin & Katie Kauffman said...

So have they totally ruled out a CI for Evan, or is that still a possibility if the bone conduction aid doesn't work? How long will they have him try the bone conduction aid before making a ruling? How frustrating that you are in a kind of limbo! I hope you get some definitive answers soon.

Leslie & Katie

Mighty Max! said...

Frustrating indeed, my friend.


Eva Nichole said...

Its so hard when they are right on the boarder. I hope after their meeting you get some good answers and everyone figures out what to do.

Crystal and Eva

Anonymous said...

My hope is that they can get his sinus problem figured so he doesn't have to suffer from that terrible sinus pain and ear infections that he can't even tell us about. Possibly in the future there will be a mirco chip that they will be able to implant to help those with hearing loss, and just maybe Evan would be a candidate for that procedure.
Hoping and just maybe!
Love, Grandma Key

Linden said...

I do hope you can figure things out in the meeting. Seems the medical community knows so much but not everything. It is hard to watch our kids struggle with sickness. I know how frustrating being in the middle can be. Thanks for the update.
Take care,