Hi, my name is Darla. My story is about my son, 2 year old Trent,
the sweetest little pumpkin head I know. When he was about 9 months
old I started to notice he did not use his right hand and mentioned
this to anyone who would listen though I was repeatedly told not to
worry about it. Around a year of age the docs started taking me
seriously and he saw a neurologist who was certain he had a stroke
at birth and wanted an MRI to confirm this, I told her I was sure
that the problem was progressively getting worse and that didn't fit
with a stroke but she blew me off and we waited a month for the
MRI. They found a VERY large mass in his left fronto parietal
region (about the size of a fist, and his head isn't very large at 1
year). The next day they went in and his neuro-surgeon said blood
that looked like motor oil just started oozing out as soon as they
cut. Apparently, he has some kind of vascular malformation (they
have never been more clear than that, though cavernous malformation
has been tossed around) that had started to bleed and had been
bleeding in his head for a long time creating a calcified cyst
around itself and this was putting pressure on his brain leading to
his symptoms. They removed what they could without causing too much
damage and he functions quite well at this point. Trent still has
limited use of his right side, oral motor weakness on that side,
much difficulty using his right hand and he wears a brace on his leg
to help him walk, he has a lot of PT and OT services to keep us
busy. Cognitively he seems to be on target so far and he is usually
a very sweet and loving little person.

We thought that we were out of the woods with the vascular issues
until recently when his regular MRI(every 3 months with sedation,
not fun!) found that the original area of malformation had begun to
grow again. They aren't sure whether to do radiation or another
surgery but at present they want to watch and see what it does
next. There are also concerns that malformed veins in his GI tract
might be causing some recent tummy troubles he has been
experiencing.

I guess that is about it, sorry write so long! I am wondering if
anyone else has had similiar experiences? Also, I am going to start
a yahoo-group specifically as a support group for moms who's kids
are going through this, I know there aren't many of us but if any of
you have kids who are going through this I would love it if you
would join!

Thanks
Darla