Loading ...
Sorry, an error occurred while loading the content.
 

My son'd diagnosis of MM

Expand Messages
  • oneofakindco
    Hi, I found this site through DJ s site moyamoya.com. My 11-year-old son, Tyler, was recently thought to have Moya Moya. He was born with mild Cerebral Palsy,
    Message 1 of 3 , Mar 24, 2003
      Hi, I found this site through DJ's site moyamoya.com. My 11-year-old
      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 listen
      when we told them he has never had a weaknees this severe on one side.
      He was twitching and very lathargic (excuse my spelling) He twitched
      for 9 hours before losing the use of his arm and the left side of his
      face, all the hospital did was start an I.V. and tell us he was just
      tired from the twitching. After 3 days in the hospital they started
      wondering if maybe he had had a stroke (WOW what a concept). Anyways,
      this all happened Dec. 21st to the 24th of 2002.
      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 be
      a month or two before they can do the surgery IF he needs it.
      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
    • dareinhart@yahoo.com
      --Glad to hear that Dr. Steinberg is going to look at your son s test results. I m sure if you sent an e-mail to Dr. Scott at Boston Children s, he would look
      Message 2 of 3 , Mar 25, 2003
        --Glad to hear that Dr. Steinberg is going to look at
        your son's test results. I'm sure if you sent an
        e-mail to Dr. Scott at Boston Children's, he would
        look at them as well. You can get his e-mail address
        through the hopital's web site.

        Hope you get answers soon!!! It's very frustrating
        when medical professionals don't listen!!

        Denyse

        - oneofakindco <oneofakindco@...> wrote:
        > Hi, I found this site through DJ's site
        > moyamoya.com. My 11-year-old
        > 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 listen
        > when we told them he has never had a weaknees this
        > severe on one side.
        > He was twitching and very lathargic (excuse my
        > spelling) He twitched
        > for 9 hours before losing the use of his arm and the
        > left side of his
        > face, all the hospital did was start an I.V. and
        > tell us he was just
        > tired from the twitching. After 3 days in the
        > hospital they started
        > wondering if maybe he had had a stroke (WOW what a
        > concept). Anyways,
        > this all happened Dec. 21st to the 24th of 2002.
        > 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 be
        > a month or two before they can do the surgery IF he
        > needs it.
        > 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
        >
        >


        __________________________________________________
        Do you Yahoo!?
        Yahoo! Platinum - Watch CBS' NCAA March Madness, live on your desktop!
        http://platinum.yahoo.com
      • djkrn2000
        ... listen ... side. ... his ... Anyways, ... be ... Rena- I have to let you know about the Dr who treated our son,Geoff, he was diagnosed when he was 12 with
        Message 3 of 3 , Mar 30, 2003
          --- In parentingchildrenwithmoyamoya@yahoogroups.com, "oneofakindco"
          <oneofakindco@y...> wrote:
          > Hi, I found this site through DJ's site moyamoya.com. My 11-year-old
          > 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
          listen
          > when we told them he has never had a weaknees this severe on one
          side.
          > He was twitching and very lathargic (excuse my spelling) He twitched
          > for 9 hours before losing the use of his arm and the left side of
          his
          > face, all the hospital did was start an I.V. and tell us he was just
          > tired from the twitching. After 3 days in the hospital they started
          > wondering if maybe he had had a stroke (WOW what a concept).
          Anyways,
          > this all happened Dec. 21st to the 24th of 2002.
          > 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
          be
          > a month or two before they can do the surgery IF he needs it.
          > 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

          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.

          Thanks,
          I hope this helps.
          Debbie Kasper
        Your message has been successfully submitted and would be delivered to recipients shortly.