[tri-med] Re: ABR and Craniosynostosis

Eleora failed all her tests as a baby and at 6 months old got a set of
hearing aids.  We are going in for a more extensive test in a few weeks =
that
has to be done in an ER since she has to be sedated.  We were told that =
UNC
is one of the only hospitals that does this new test It will be an ABR =
that
can test different frequencies. The hope is it will make things more =
clear
for us since she tenses up whenever she wears her hearing aids.

BTW one thing I did that helped keep her hearing aids on is I attached =
them
to her glasses I took the rope with plastic things on the end that would
normally just hold her hearing aids on and cut the rope off and slit =
that
part onto the end of her glasses.  It is kind if hard to describe.

Cindy Toomey

Independent Educational Consultant
Usborne Books
www.ubah.com/w2975


-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx] =
On
Behalf Of Loren Warnemuende
Sent: Monday, September 26, 2005 3:22 PM
To: tri-med@xxxxxxxxxxxxx
Subject: [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=20
> 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=20
> 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=20
office which is the typical way--they give a drug (can't remember=20
which) to make the kiddo sleep so they can get an accurate reading. =20
Unfortunately, Keren had such bad obstructive sleep apnea that her=20
snoring was throwing off the whole computer reading (and the nurse on=20
hand was freaking out that she wasn't getting enough oxygen!  We=20
weren't quite as worried about that!).  As a result, we had to do her=20
ABR with Keren under anesthesia with oxygen.  A little more stressful,=20
but it went quickly and they got the necessary results.  I believe we=20
had a CT scan done at the same time in which her ENT took a close look=20
at the structure of her ears.

The determination at that point was that Keren's left ear canal was=20
very tiny, and she basically didn't have a right canal (just fleshy). =20
Her hearing was moderate to severe loss, but it was conductive loss,=20
not neurological.  As a result she was fitted with a bone-conductive=20
hearing aid (her's is like a headband--you can see her wearing it in=20
pictures on our website).  The brand is Starkey (sp?).  So far we've=20
been happy with that, and in terms of her hearing we saw an immediate=20
positive response when they put the aid on her.  She was a little over=20
1 yr. at the time.  We typically have her wear it at school and off and=20
on at home, but we're pretty sure her hearing has improved with time,=20
too.  She can certainly hear without it, and understand things, but=20
it's hard to know how much better she can hear with the aid.  We=20
haven't had another ABR recently, but she'll have a basic hearing-booth=20
test this fall.

Hope this info helps!


Loren (wife to Kraig, mom to Keren Elyse, T18, 2 1/2 years old=20
(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

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

Other related posts: