[tri-med] Re: ABR and Craniosynostosis

On Sunday, September 25, 2005, at 06:48 PM, callstheshots@xxxxxxx wrote:
> Charlotte also failed four OAE test for her hearing and is having an 
> ABR this week. Anyone been through this? What could they possibly find 
> out that could help her? Is a hearing aid a possbiltiy? What have 
> other people done?
> Thanks!
> Erin, mom to Charlotte, partial trisomy 16, partial monosomy 9, almost 
> three months old!
>

Keren has had a couple ABRs.  The first one we tried to do in the 
office which is the typical way--they give a drug (can't remember 
which) to make the kiddo sleep so they can get an accurate reading.  
Unfortunately, Keren had such bad obstructive sleep apnea that her 
snoring was throwing off the whole computer reading (and the nurse on 
hand was freaking out that she wasn't getting enough oxygen!  We 
weren't quite as worried about that!).  As a result, we had to do her 
ABR with Keren under anesthesia with oxygen.  A little more stressful, 
but it went quickly and they got the necessary results.  I believe we 
had a CT scan done at the same time in which her ENT took a close look 
at the structure of her ears.

The determination at that point was that Keren's left ear canal was 
very tiny, and she basically didn't have a right canal (just fleshy).  
Her hearing was moderate to severe loss, but it was conductive loss, 
not neurological.  As a result she was fitted with a bone-conductive 
hearing aid (her's is like a headband--you can see her wearing it in 
pictures on our website).  The brand is Starkey (sp?).  So far we've 
been happy with that, and in terms of her hearing we saw an immediate 
positive response when they put the aid on her.  She was a little over 
1 yr. at the time.  We typically have her wear it at school and off and 
on at home, but we're pretty sure her hearing has improved with time, 
too.  She can certainly hear without it, and understand things, but 
it's hard to know how much better she can hear with the aid.  We 
haven't had another ABR recently, but she'll have a basic hearing-booth 
test this fall.

Hope this info helps!


Loren (wife to Kraig, mom to Keren Elyse, T18, 2 1/2 years old 
(9/27/02), and Clarissa Joanne (7/17/05) )
Southeast Michigan
http://webpages.eng.wayne.edu/~ad6075

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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