[tri-med] Re: New to list...looking for options

----- Original Message -----
From: "Annette O."
> Have you read anything on the corpus callosum?  I have tried to find info
on this but the only thing it says is that it transfers information.

Annette,
Alex also has ACC - there are a few others on the list that have ACC or
hypogenesis of the ACC.
It is very hard to find specific information on ACC because it can mean
nothing or it can mean a lot.
You can live life without ever knowing that you have ACC - the brain
accomodates for the fact that its missing. In fact they estimate that there
is a large percentage of the population, walking around with ACC and will
never know it unless they have a scan at some stage for something else.

On the other hand there are a large number of people with ACC who have
anything from mild to profound delays. What they think is that the ACC is
actually only a symptom and indicator that there was a problem with the
development of the brain in utero. The specific problems that you see are
related to the other neurological problems rather than the ACC.

Alex has a rare, actually very rare condition, associated with ACC called
Shapiro's Syndrome. By that I mean that it isn't caused by the ACC, but
those individuals with Shapiro's Syndrome usually have ACC and that it
indicates a problem with the midline development of the brain in utero and
hence another structure of the brain, the hypothalamus did not develop
correctly. Its the hypothalamus that causes Alex's problems.

Developmentally some people with ACC exhibit signs of a condition called
split brain syndrome. Thats where the left hand literally doesn't know what
the right hand is doing. Its rare and is usually only apparent if there is
damage in adult life or if a person has a corpus collosectomy (the corpus
callosum is cut during surgery for example to stop seizures spreading).
Children seem not to develop this because the brain is so plastic it works
out other ways around the corpus callosum. We suspect that the ACC however
is directly contributing to a problem that Alex has called Central Auditory
Processing Disorder or if you want to be pedantic cortical deafness (he has
a hearing loss so technically can't be diagnosed with CAPD - its Cortical
Deafness)

There is a huge ACC Network researching the effects of ACC operating out of
Maine. I can send you the details of the group if you like. I joined hoping
to find another person with ACC, but its too rare. Now if Alex had Anderson
Syndrome or any of the other known syndromes associated with ACC it would be
a different story.

Alex is part of the ACC Research group that Gary has running out of the
University of Maine. Its produced a little bit of interesting information
but its still early days and so much to cover.

I used to belong to the listserv but its traffic is much heavier than this
one and I just dont have the time...... I usually write directly to Gary and
or his wife.

Don't judge each day by the harvest you reap, but by the seeds you plant.
Robert Louis Stevenson

Keep Looking for Rainbows!!!
Karen, Mum to Alex (7, T-18 mosaic)
Sydney, Australia
http://members.optushome.com.au/karens
http://www.trisomyonline.org

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

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