Re: My son'd diagnosis of MM
- --- In firstname.lastname@example.org, "oneofakindco"
> Hi, I found this site through DJ's site moyamoya.com. My 11-year-oldlisten
> son, Tyler, was recently thought to have Moya Moya. He was born with
> mild Cerebral Palsy, so when he had a stroke (no TIA's before) the
> doctors acted like there was nothing wrong with the fact that he
> couldn't use his left arm. His CP was so mild that noone believed he
> had it, but the Doctors in the ER didn't know him and wouldn't
> when we told them he has never had a weaknees this severe on oneside.
> He was twitching and very lathargic (excuse my spelling) He twitchedhis
> for 9 hours before losing the use of his arm and the left side of
> face, all the hospital did was start an I.V. and tell us he was justAnyways,
> tired from the twitching. After 3 days in the hospital they started
> wondering if maybe he had had a stroke (WOW what a concept).
> this all happened Dec. 21st to the 24th of 2002.be
> He has since had MRI's and MRA's finally they decided to do an
> artiogram (spelling?) and still won't say the "MM" word. They just
> say the test have shown the arteries on the right side of the brain
> are closed (Duh) and that he has narrowing in the arteries on the
> left side of the brain, he might need surgery, but he's stable right
> now so there's no rush (What! My son was at 3 Christmas parties the
> day before his Stroke and he wasn't stable then?) They say it will
> a month or two before they can do the surgery IF he needs it.Rena-
> Needless to say, this single mom is very frustrated and going a
> little crazy. Right now, I am trying to figure out how I can get him
> to Boston (we live in CO) because it looks like it's the only way to
> find him the help he needs.
> Sorry this is so long. Just a very frustrated mom trying to get any
> info out there. Rena
I have to let you know about the Dr who treated our son,Geoff, he was
diagnosed when he was 12 with Moyamoya. She was excellent and is in
the midwest, located in Indianapolis, she also trained with Dr. Scott.
(in Boston) I have the utmost trust in her opinion and she is
absolutely meticulous in her work and is very good with the kids. Her
name is Jodi Smith and she is a pediatric neurosurgeon at Riley
Children's Hospital in Indianapolis.
I know it is very frustrating to hit the brick walls like you have, I
was there two years ago, and in the midst of my frustration, when
noone could see my son for longer than I was comfortable with, she had
us come over in two days from the time we talked to her on the phone,
and Geoff had surgery about a week later. Things have gotten better
ever since. If you call Riley Hospital for Children in Indianapolis,
they can give you the number for her office, and I will find the
number for you and give it to you.
I hope this helps.