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

----- Original Message ----- 
From: "Debbie" <claire@xxxxxxxxxxxx>
> >---What tests would be needed to see blockage? ----

The scans will be a start. Other than that just wait for her ears to grow.
Just remember, there are a number of kiddies on the list that are still
waiting for their kids ears to grow!!

> >---Yes Claire got one, but we had to go back to the hospital to get it
> >done (life expectancy was so low, they didn't do much for her in the way
> >of testing - and we were fine with that)...

And I agree as well - as you ride the roller coaster you will learn and find
that you worry about very different things to other parents. After 9 years I
can tell you when someone says something or suggests something my initial
reaction is "Is it life threatening" - if its no my blood pressure drops and
I relax. If its not life threatening chances are it can wait till mum is
ready to handle it.

>>it was the test that was
> >pass/fail... she failed with flying colors.... :o\  ----

So did Alex, even in the ear he hears with just fine. Alex has had every
possible hearing test that its possible to have. Absolutely none of them
have been consistent with each other.

Remember Alex is verbal and can tell us now what he hears and doesn't hear
and is very good at it. His offical hearing test results (behavioural
hearing tests which I didn't mention as its not an option for any baby at
Claire's age) a few years ago were no loss in his left ear and and a mild
moderate loss in his right.

At the present time he has a mild loss in his left and  severe loss in his
right. Even his severe loss is not "normal" in that its a V shape (normally
hearing losses are a wedge shape).

But even as a babe his tests were inconsistent

Alex has always failed OAE's in his right ear and only ever received partial
passes in his left. These days he flunks the left ear. Remember his left
hears just fine.

ABR's showed that he had a moderate to severe loss in both ears - and it
took us 18 months to get accurate ABR's because he too had odd looking
waves. Personally I would take heart in the odd looking waves - odd looking
waves support Karen's hypothesis of a maturing and still developing nervous
system.

Behavioural testing showed no hearing loss worth worrying about

And an ecog (a hearing test thats done surgically - not one that I would
recommend at this point) showed a profound hearing loss.

So to summarise when Alex was young he had every hearing test possible and
each one gave different results. None of them were completely accurate.

> >---Perhaps the OAE was done first (initial test) to test for blockage...
> >before they did her ABR.  I don't think she had to be asleep for it.  It
> >was inconclusive because they couldn't get a probe small enough for her
> >ear canals.  That made the ABR inconclusive too, as she didn't do well
> >with the ABR.... but she slept through it very well ... no
edatives!  ----

LOL - yes sounds like an OAE and yes they do do them for screening.

> >--- the ABR went well, as far as her being asleep... but she didn't
'pass'
> >... so, I guess.... we have had the tests done, and all are inconclusive,
> >but you have given me some hope that she will 'grow out of' her hearing
> >loss!    Yeah!  ----

Yes don't panic she may well "improve" - see my first rule, "if it aint life
threatening..."

> >---I like the way you think!!   Thanks for the wonderful theory!  ----

Thats OK - just remember its Karen's theory :-))

> >---yeeesh... tumors?  You guys have lots of things to worry about!   This
> >is one heck of a ride!  :o\  ----

Again try not to panic, just be aware of the risk. At the moment we don't
have an accurate picture because its only be "known" about for about 10
years. But the best guess is that somewhere between 1 and 6% of long term
survivors with T-18 will develop either Wilm's Tumour (kidney cancer) or
hepatoblastoma (liver cancer - even smaller risk) We have two Wilm's
survivors on the list at present and one who has left the list.

Wilm's is a fast growing cancer but very treatable - if you catch it early.
So we screen our kids for Wilm's every 6 to 12 months from 6 to 12 months of
age. The screening is easy and non invasive, Alex usually sleeps through his
as its actually relaxing, just a pain to remember to get done.

Normally Wilm's is seen in kids up until the age of 5. Our kids seem to be
at risk for much longer. I think the oldest kiddie with T-18 that was
diagnosed with Wilm's was in her teens. The youngest 11 months. Dr Carey has
written a great article thats in the professional section of the SOFT USA
website on the subject.

>> >---It was actually the ENT that said there wasn't an aid small enough
for
> >her... her visit yesterday was with an ENT.  ----

Next time remind him that there are bone conducting hearing aids - they
require no ears :-) as they sit on the bone behind the ear and are held in
place by a head band.

> >---OKay... I'm making my list (should I bring my video camera too?)...
> >what do I ask first?  :o) ----

If you want to show the neuro something and get an explanation - yes. If you
mean to tape the appointment - no, but its a great thought for those doctors
I hate LOL

When Alex was little and we suspected that he may be having seizures I did
take tapes of what we were seeing for the neuro to look at. Bottom line is
that while we thought they were seizures, and they looked like seizures,
they weren't - they were apneas and reflux. Other than showing us that his
brain was immature when he was born (and which improved on progressive
EEG's - see Karen's theory) his EEG's were negative for seizure activity. He
has had seizures though - but they were from hypoglycemia (low blood sugar)
not epilepsy. You don't medicate for those seizures you feed the kid. Took
us a long time to discover the hypoglycemia BTW.

> ----- THANKS KAREN!   AND EVERYONE FOR YOUR HELP....

Thats why we are here!!! Even if sometimes I do get snowed under with other
stuff (I have a lot of personal stuff happening here at the moment) at times
I am still listening reading and very much thinking and praying for each and
every one you.

Perhaps parents would enjoy their children more if they stopped to realize
that the film of childhood can never be run through for a second showing.
  -- Evelyn Nown

Keep Looking For Rainbows!!
Karen, Mum to Alex (8 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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