Our daughter's CT films show a large empty hole (it looks black on the CT,
when
comparing it to the whiter looking area of the parts of the brain that are
there). I
believe this is called the open-lipped cleft. It is in the motor cortex of
the left hemisphere.
She then has a "slit" in the same area on the right side. I believe this is
closed-lip
schizencephaly.
By looking at the CT, you get a better idea of where the brain is affected.
Our PT's
chin hit the floor when she saw our daughter's CT when Evan was about 8 months
old. She said the whole speech motor is gone. Speech is usually on the left
side
(but can be trained to the right hemisphere in some people). Now 5 years
later,
Evan can slowly say "I am Evan". She yells out the numbers on the aisles in
the
grocery store. She tells us "I am hungry" and a lot more. SO..........just
because
one area is badly affected, doesn't mean that other areas won't end up
compensating
to some degree.
One thought that I had regarding the issue of a birth injury. Birth injuries
can
cause cerebral palsy type of injuries, but I don't feel that parts of the
brain would
"disappear"..... they would be there but show damage due to a lack of oxygen
or trauma.
Schizencephaly is described as a neuronal migration error sometimes.
Which would imply to me that when the brain was forming, the neurons (for some
reason, maybe an intuero stroke) did not go where they should have in the
brain
and absent areas formed as the brain developed around them. Schiz means
"funnel shaped impression". If a fetus had a stroke during the critical
period
when the brain was forming during gestation then Schiz could develop. Most
of
the time stroke related brain injuries to a fetus is called porencephaly (I
think).
But there are cases of Schiz that are stroke related. Our neurologist
believes
that our daughter's Schiz is stroke related due to the location of the
clefts. They
are in the direct line of a major blood supply to those areas of the brain.
She said
that children with genetically caused Schiz tend to have other malformed parts
of the brain as well, but stroke related Schiz (even if the absent areas are
severely affected) tend to be more localized in the brain.
So to me the question for you, is "do the scans show absent
areas?"
or is the brain fully intact, but damaged due to a birth trauma? If there
are
absent areas, then it seems that the condition is congenital. If there are no
absent areas, you might want to look further.
Our daughter has a Rifton Pacer gait-trainer (it is a walker that will
support her completely so that she won't ever fall). The great thing about
the Pacer is that it
has supports that will help with added support today but those supports can
be
removed until eventually it is only an ordinary walker, if the the child
progresses to
that point. There is quite a bit of versatility for each individuals needs,
with the
Pacer.
Here is a link to information about the Pacer.
Scroll to the bottom and find out how to order the video of children using
the Pacer.
You can use that to show the therapists. (Our insurance paid 80%). You need
a doctor's prescription and a PT to write it up. We submitted a preapproval
to insurance
to find out if they would pay for it.
Evan took a couple of years to get walking on a level surface. We first
built her
an incline to walk down, because she wasn't strong enough to walk on a level
surface.
Now she can walk on a level surface with the gait trainer. Up until the last
few months
she wouldn't walk with her splints on her feet. That improved in September.
It is a slow go, but you just have to climb each molehill day by day. (They
are molehills for most kids, but mountains to us).
Sincerely,
Joan