I just wanted to respond about getting arms to
working better. As was said the "range of motion"
excercises are a wonderful way to break up some
of the abnormal patterning.
Evan has needed intense therapy to break up
flexion and extension
patterning. After thousands of stretches you begin
to see some changes. We also worked at facilitating more normal pattern use.
For example
if the arms have a flexion pattern then according
to our PT, the opposing muscles are too weak to
to balance out the excessive flexion. The muscles
that we would facilitate would then be to attempt
to get the triceps on the back of the arms to
tighten by getting her to hold herself up for as long as possible (a few
seconds at time and then
keep working up to minutes).
(When the back ones tighten the front ones have
to release or vice versa). So think of how that you would get the strength
to do 100 push ups (which I can't do!!!). Start small. One becomes 2, 2
becomes 3 and so on. Eventually those muscles that aren't working
at all begin to get a little stronger.
They may
always hang up with some abnormal patterning (tightness). It has taken many
many hours and
we've got many many to go to get to functional
use but we've seen huge improvements.
One thing
that has helped Evan tolerate the intense requirements that we make of her is
to have her
watch engaging videos while trying to hold herself
up. She has a TV and VCR in the floor, we hold
her in position and while she is distracted by what she is watching, her
high tone improves considerably. (She also couldn't see past ten inches the
first year of her life, she sees across the room now).
Another comment about getting an EEG that came
from Kelly and Carson, I felt exactly the same
way. Unless the neurologist was going to treat with seizure meds solely on
the basis of an EEG even though she was not having active seizures then I saw
no point of getting an EEG UNTIL seizures started. Our time needed to be
spent working on therapy.
Evan did have seizures start
about a year later (last May). They are now
controlled with Lamictal. In retrospect, I am pleased that we did not have
have the extra EEG
earlier. If it had shown no abnormal activity then we would have felt false
sense of security and if
it had shown abnormal activity then we would have
spent every day waiting for the seizures to start.
So I truly don't feel that we would have gained
anything by getting the EEG when she was not having seizures. If you suspect
that peculiar ticks, eyeblinking or so on might be small seizures then
a neurologist could probably treat them on the
basis of an EEG outcome. Just one opinion.
I haven't had a lot of time lately to write, Miss
Evan had the Baclofen pump implanted on November 17th. We've been working
hard at
therapy since she has recovered. We are amazed
and very pleased with the outcome.
Her legs now
can DANGLE. (speaking of things that parents of
healthy children can't think to appreciate).
A
large majority of the extensor reflex that she displayed has been removed but
she has to now
try to build actual strength. So it is a little like
starting all over from the beginning.
It is the best thing that we could have EVER chosen to do for her.
I won't continue to go on and on but just wanted to put in my 2 cents worth.
Take care everyone. I still think of the children
that we've lost this year, you are in our prayers.
Sincerely,
Joan