[tri-med] Re: Hearing Loss

----- Original Message ----- 
From: <SHAMOND73
> apparently you can do it without sedation, if your child is sleeping and
> does not move !!!! i can't see that working !

Alex has never had sedation for an ABR and he has had about 1 dozen. No I 
apologise - he had sedation for the ABR in Utah with Dr Carey.

They dont actually have to be asleep, just still. With the last ABR that 
Alex had he watched videos on TV for the audiologist.

When he was a baby though we would schedule the appointment for first thing 
in the morning then I would wake him at 3am and not let him go back to sleep 
until the ABR. When it was time I would simply feed him and then go into our 
"sleeping" ritual (me singing and stroking his head). The ABR's often took 
longer to do because frequently they would get one ear done and then he 
would wake so we would have to reschedule the second ear.

Because Alex had central apneas they wouldnt sedate him (sedation increases 
the likliehood of apneas) so it was the way we always did it.

> i spoke to the audiologist today and she said there was some type of
> electrical interference and now that she was looking over the results more 
> closely,
> she sees that maybe it is not a moderate loss, but a mild-moderate  loss, 
> but
> she won't know for sure until she does the test again.

Ahhhh - another one!!!
Alex has this sort of response with his ABR and we have finally figured it 
out - its only taken 13 years!!

Lets see if I can simplify the complex story. Alex acted as if he was 
profoundly deaf when he was a baby, yet I was aware that he could hear. So 
we tried and tried and tried to get hearing results done but they never made 
sense. Each type of test was consistent but the different tests weren't. (so 
all the ABR's were the same. all the VROA's were the same - its just the ABR 
and the VROA were so very different)

In short the ABR's said that he had a moderate / severe loss, the VROA's 
said no it was a mild / moderate loss, the echog and OAE's said profound - 
confusing!! So what was it and why were they so different.

The VROA was the most accurate at picking up the mechanical hearing loss - 
that is what he "could" physically hear but the ABR was also picking up the 
fact that he had CAPD (Central Auditory Processing Disorder). So whilst his 
ear could hear the sound and it got the brain OK there was a delay in the 
brain processing the sound and therefore producing the brain wave that the 
ABR measures. That explained why Alex responded to sound better than he 
responded to speech.

I knew that Alex had CAPD but the audiologists here refused to acknowledge 
that CAPD even existed. CAPD as a diagnosis is relatively "new" (last 15 
years or so) so its not well understood. More recently audiologists have 
begun researching CAPD and so have started to understand it better. For the 
very first time the audiologist actually admitted that Alex had CAPD in a 
report late last year and she actually used the ABR's as proof.

So like Jason, Alex's ABR's always made his hearing seem worse than it was 
because it was picking up the CAPD (interference) - if Jason is like Alex 
then his mechanical hearing is probably the better than the ABR is showing. 
The good news is that they think that only people with higher cortical 
functioning can exhibit CAPD. The bad news is that little can be done for 
CAPD.

Alex's CAPD Is probably due in part to the fact that he has ACC or more 
accurately dysgenesis of the corpus callosum. When they did his MRI no one 
made a big deal out of the fact that his corpus callosum was so different to 
the rest of the world - they simply said that it was there just thin. But it 
has caused most of his problems.

>>they did see that the mylenization was a little immature, a little  behind
> schedule in its development........so we'll see.

Poor myelination is also common in T-18. Myelin is made up of long chain 
fats - so if you havent already start the EFA's (essential fatty acids also 
known as Omega fats) EFA's are so essential to brain development that they 
now add them to all baby formula, but I have been advocating them for our 
kids long before that. I specifically use Efalex but the US folk can share 
the brands that they are using.

As a babe I always gave Alex fish for the EFA's but when the supplements 
came out I started him on the Efalex. Within 6 months Alex had started 
talking. Coincidence? maybe but I believe the EFA's played a big part. If I 
stop them his teachers ask whats wrong with him as he regresses, not so that 
you can say "he stopped this or that" but more a general seeing that he's 
not doing as well as he was. To me thats proof that the EFA's make a 
difference.

Life consists not in holding good cards but in playing those you hold well.
                                            -- Josh Billings

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (12 years, T-18 Mosaic)
http://members.optushome.com.au/karens

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

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