[tri-med] Re: [tri-family] Re: Baby Claire - Neu/Aud appt



> [Original Message]
> From: Karen <karens@xxxxxxxxxxxxxxxx>
> To: <tri-family@xxxxxxxxxxxxx>

> There are other tests that they can do to see if she is hearing or not.
> Beware, this subject gets Holly and I going :-))

Karen & Debbie,
When I first saw this topic come up I cringed! I just didn't feel like I
had the mental capacity to tell this story again.  But it is a topic that
gets me up on my soapbox :-)
I'll try and put this in chronological order.  Morgan was in the NICU for 6
wks. after he was born.  Before he was released they did the initial
hearing screen and he did not pass it.  At about 4 mos. we scheduled him
for an ABR   This ABR showed that Morgan had moderate to severe hearing
loss in both ears.  The audiologist did not feel fluid in his ears was the
problem, specifically she didn't feel fluid could cause that much of a
loss.  We decided to get hearing aids for Morgan because we felt hearing
was very important in his development.  For 3 yrs. we had an ongoing battle
with those hearing aids.  At first, Morgan didn't have the fine motor
skills to pull them out, in fact, he seemed happy to have them in.  He
started making all kinds of noises within a month of getting them.  The
feedback from the aids drove me absolutely crazy! The audiologists were
remaking his molds every 2-3 mos. and Morgan was having testing in the
hearing booth that frequently, too.  Hearing booth tests were consistently
inconsistent.  Morgan seemed to respond to sounds equally with or without
the aids.  We had to switch audiologists 4 times in the 3 yrs. he wore
hearing aids.  In that time no one ever suggested doing another ABR.  I
didn't suggest it because I didn't know anything! At the time we were not
with this listserv, we didn't even have a computer.  When Morgan was 3 he
went to preschool and he was becoming noticeably crankier all the time. 
The school said he wouldn't leave his hearing aids alone.  At home he was
constantly pulling them out.  He would bite them, pull the molds off the
aid part, he swallowed a piece of plastic that he bit off one of them.  He
cried when they were in, was happy when they were out.  And still, nobody
(including us wonderful parents) thought there was a change in his hearing.
In hindsight all the signs were there, but we thought we were doing the
best thing for him by having those aids in all the time.  He needed to be
able to hear.  What was making him hate them so much was beyond us. 
Finally, the audiologist suggested we go to the University of Iowa where
they were doing a new, somewhat experimental test.  At this time Morgan was
3 1/2 yrs. old.  The test was called SSEP (steady state evoked potential.) 
Before performing the SSEP they wanted to do an ABR.  Well, lo and behold,
after an hour they walked in to the room and announced that Morgan's ABR
was basically normal.  He had normal hearing in his left ear and borderline
normal to mild loss in his right.  They continued with the SSEP which
further concluded that Morgan did not have much, if any, hearing loss. 
Now, why did this happen?  I think Karen explained it pretty well.  One dr.
flat out told us the original ABR was wrong.  I don't know if it was.  I
really feel that in the beginning the hearing aids did help Morgan.  What
happened next was a combination of things, lack of experience and knowledge
on our parts, and changing audiologists so often none of them ever really
got to know Morgan, he slipped through the cracks.  Test and retest is my
opinion on hearing.
  
As Karen knows, Morgan just had an ABR done last week.  Two wks ago he had
an abnormal OAE, he failed in the right ear.  I freaked!!!  Not ready to go
through this whole thing again.  I emailed Karen who was able to "talk me
down."  I didn't worry too much about it and another lo and behold, the new
ABR was identical, or nearly, to the one done 2 yrs. ago.  YEAH!!! 

Anyway, Debbie, it is something that you should definitely watch and check
and just keep checking.  Hopefully with some of our experiences here on the
list, you won't have to go through some of the he** that some of the rest
of us did.   



"I've got a Caribbean soul I can barely control and a piece of Texas here
in my heart!" 
Jimmy Buffet, "Migration"

--- Holly, wife of Mike, mom of Morgan (5 yrs.) unbalanced translocation
t18q+ and 9p-
    Des Moines, IA
    http://www.geocities.com/hmmmcormick 

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

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