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Re: [Parenting Children with Moyamoya] Has anyone else had this happen?

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  • dareinhart@yahoo.com
    -Debbie, sorry about Geoff s TIA/stroke. I hope it resolves soon. Unfortunately, Maddie still has TIA s. They only happy when she hyperventilates. On Friday
    Message 1 of 9 , Nov 10, 2002
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      -Debbie, sorry about Geoff's TIA/stroke. I hope it
      resolves soon. Unfortunately, Maddie still has TIA's.
      They only happy when she hyperventilates. On Friday
      she was playing the flute at school and she said she
      couldn't feel anything from the waist down for about 8
      minutes. After that she was fine. It does make me
      nervous that something bad will happen. I told her to
      take more breaks while she's playing.

      Was Geoff doing anything that would cause
      hyperventilation when this happened? Was he
      dehydrated? We were told not to let Maddie get
      dehydrated. Hope things are getting better.

      Denyse

      -- djkrn2000 <no_reply@yahoogroups.com> wrote:
      > Geoff had a TIA/stroke last week that affected only
      > his right hand,
      > but it has been two years since his surgeries and a
      > year since his
      > last TIA. He still has residual weakness and
      > numbness in his Right
      > hand and is going to start therapy this week. They
      > don't understand
      > why it happened or why it didn't fully resolve as he
      > doesn't have any
      > signs on the MRI/MRA of anything permanent. She
      > hopes it will
      > continue to resolve, but it is still significantly
      > weaker than the
      > left and it is completely numb...
      >
      > Has anyone else had something like this happen after
      > surgery?
      >
      > Thanks,
      > Debbie
      >
      >


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    • djkrn2000
      -Denyse: Thanks for responding. He wasn t doing anything strenuous, but he had been in the hospital for an asthma flareup about 3 weeks ago, and he was
      Message 2 of 9 , Nov 11, 2002
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        -Denyse:
        Thanks for responding. He wasn't doing anything strenuous, but he had
        been in the hospital for an asthma flareup about 3 weeks ago, and he
        was dehydrated. We have tried to keep him drinking, but, he is 15, and
        has a mind of his own. He understands how important it is now. He
        also takes an aspirin a day.

        the dr. thinks it may have a connection to tthe asthma medications
        and the dehydration. I just hope it all comes back.

        Debbie
        -- In parentingchildrenwithmoyamoya@y..., <dareinhart@y...> wrote:
        > -Debbie, sorry about Geoff's TIA/stroke. I hope it
        > resolves soon. Unfortunately, Maddie still has TIA's.
        > They only happy when she hyperventilates. On Friday
        > she was playing the flute at school and she said she
        > couldn't feel anything from the waist down for about 8
        > minutes. After that she was fine. It does make me
        > nervous that something bad will happen. I told her to
        > take more breaks while she's playing.
        >
        > Was Geoff doing anything that would cause
        > hyperventilation when this happened? Was he
        > dehydrated? We were told not to let Maddie get
        > dehydrated. Hope things are getting better.
        >
        > Denyse
        >
        > -- djkrn2000 <no_reply@y...> wrote:
        > > Geoff had a TIA/stroke last week that affected only
        > > his right hand,
        > > but it has been two years since his surgeries and a
        > > year since his
        > > last TIA. He still has residual weakness and
        > > numbness in his Right
        > > hand and is going to start therapy this week. They
        > > don't understand
        > > why it happened or why it didn't fully resolve as he
        > > doesn't have any
        > > signs on the MRI/MRA of anything permanent. She
        > > hopes it will
        > > continue to resolve, but it is still significantly
        > > weaker than the
        > > left and it is completely numb...
        > >
        > > Has anyone else had something like this happen after
        > > surgery?
        > >
        > > Thanks,
        > > Debbie
        > >
        > >
        >
        >
        > __________________________________________________
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        > U2 on LAUNCH - Exclusive greatest hits videos
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      • harmonmandy
        --Hannah just started this week complaining of numbess in her right leg. It has also been 2 years since surgery. We go to the neurologist wed. I have
        Message 3 of 9 , Nov 11, 2002
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          --Hannah just started this week complaining of numbess in her right
          leg. It has also been 2 years since surgery. We go to the
          neurologist wed. I have not noticed any residual weakness but she
          has had several episodes. She does have headaches after any blowing-
          baloons, flutes, running too hard. I do hope your son Geoff
          recovers soon-keep us posted. Mandy

          - In parentingchildrenwithmoyamoya@y..., djkrn2000 <n-=
          > Geoff had a TIA/stroke last week that affected only his right hand,
          > but it has been two years since his surgeries and a year since his
          > last TIA. He still has residual weakness and numbness in his Right
          > hand and is going to start therapy this week. They don't
          understand
          > why it happened or why it didn't fully resolve as he doesn't have
          any
          > signs on the MRI/MRA of anything permanent. She hopes it will
          > continue to resolve, but it is still significantly weaker than the
          > left and it is completely numb...
          >
          > Has anyone else had something like this happen after surgery?
          >
          > Thanks,
          > Debbie
        • Rhonda Gasiorowski
          Debbie, This may not be the same, but my 9 yr. old daughter had a stroke in May, days after her second surgery. She now has aphasia, rt hemi, cognitive skills
          Message 4 of 9 , Nov 12, 2002
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            Debbie, This may not be the same, but my 9 yr. old daughter had a stroke in May, days after her second surgery.
            She now has aphasia, rt hemi, cognitive skills are very affected and we are having MAJOR behavior problems.

            Has anyone experienced any of this?
            THANKS, Rhonda


            [Non-text portions of this message have been removed]
          • harmonmandy
            ... In parentingchildrenwithmoyamoya@y..., Rhonda Gasiorowski ... stroke in May, days after her second surgery. ... and we are having MAJOR behavior
            Message 5 of 9 , Nov 12, 2002
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              ---is aphasia reduced blood flow to the brain?mandy




              In parentingchildrenwithmoyamoya@y..., "Rhonda Gasiorowski"
              <lovemom@w...> wrote:
              > Debbie, This may not be the same, but my 9 yr. old daughter had a
              stroke in May, days after her second surgery.
              > She now has aphasia, rt hemi, cognitive skills are very affected
              and we are having MAJOR behavior problems.
              >
              > Has anyone experienced any of this?
              > THANKS, Rhonda
              >
              >
              > [Non-text portions of this message have been removed]
            • djkrn2000
              I knew that the risk was pretty high right after surgery, but I thought we were doing so well....it was quite a shock. I just hope it comes back. Apasia is
              Message 6 of 9 , Nov 12, 2002
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                I knew that the risk was pretty high right after surgery, but I
                thought we were doing so well....it was quite a shock. I just hope
                it comes back. Apasia is the inability to express your thoughts
                either correctly or at all and can be caused by reduced blood flow
                to the part of the brain that controls speech.

                Debbie
                --- In parentingchildrenwithmoyamoya@y..., harmonmandy <no_reply@y...>
                wrote:
                > ---is aphasia reduced blood flow to the brain?mandy
                >
                >
                >
                >
                > In parentingchildrenwithmoyamoya@y..., "Rhonda Gasiorowski"
                > <lovemom@w...> wrote:
                > > Debbie, This may not be the same, but my 9 yr. old daughter had a
                > stroke in May, days after her second surgery.
                > > She now has aphasia, rt hemi, cognitive skills are very affected
                > and we are having MAJOR behavior problems.
                > >
                > > Has anyone experienced any of this?
                > > THANKS, Rhonda
                > >
                > >
                > > [Non-text portions of this message have been removed]
              • djkrn2000
                Rhonda- I know that the risks are high right after surgery, but I was hoping that we could breathe a little easier at this point, I guess not, huh? We were
                Message 7 of 9 , Nov 12, 2002
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                  Rhonda-
                  I know that the risks are high right after surgery, but I was hoping
                  that we could breathe a little easier at this point, I guess not, huh?
                  We were just starting to feel more comfortable letting him be a
                  "normal" kid and do more things that he wanted to do. Now I feel like
                  that mother that just found all of this out. I feel like I did right
                  after surgery when the risks were really high. I know it is going to
                  be a lifelong struggle, but I guess it is all just hitting me now.

                  thanks for your response, and I hope your daughter continues to
                  improve as well. My prayers are with everyone who has been touched
                  by this disease . My thoughts are with all of you.

                  Debbie

                  --- In parentingchildrenwithmoyamoya@y..., "Rhonda Gasiorowski"
                  <lovemom@w...> wrote:
                  > Debbie, This may not be the same, but my 9 yr. old daughter had a
                  stroke in May, days after her second surgery.
                  > She now has aphasia, rt hemi, cognitive skills are very affected and
                  we are having MAJOR behavior problems.
                  >
                  > Has anyone experienced any of this?
                  > THANKS, Rhonda
                  >
                  >
                  > [Non-text portions of this message have been removed]
                • djkrn2000
                  Mandy. I hope that these syptoms resolve. I know how scary it is. I hope it is just a passing thing. Did Hannah have any residual effects from her moyamoya?
                  Message 8 of 9 , Nov 12, 2002
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                    Mandy.

                    I hope that these syptoms resolve. I know how scary it is. I hope
                    it is just a passing thing. Did Hannah have any residual effects
                    from her moyamoya? Did she have a stroke before or during the
                    surgeries, or was her problem mostly TIA's like Geoff.? Geoff plays
                    the baritone, and he hasn't had any problems with that until now, with
                    his hand, and he also plays the drums, which he can do, but not with
                    the flare he used to. This whole thing is almost as hard as going
                    through the whole process again.

                    Debbie
                    --- In parentingchildrenwithmoyamoya@y..., harmonmandy <no_reply@y...>
                    wrote:
                    > --Hannah just started this week complaining of numbess in her
                    right
                    > leg. It has also been 2 years since surgery. We go to the
                    > neurologist wed. I have not noticed any residual weakness but she
                    > has had several episodes. She does have headaches after any blowing-
                    > baloons, flutes, running too hard. I do hope your son Geoff
                    > recovers soon-keep us posted. Mandy
                    >
                    > - In parentingchildrenwithmoyamoya@y..., djkrn2000 <n-=
                    > > Geoff had a TIA/stroke last week that affected only his right
                    hand,
                    > > but it has been two years since his surgeries and a year since his
                    > > last TIA. He still has residual weakness and numbness in his
                    Right
                    > > hand and is going to start therapy this week. They don't
                    > understand
                    > > why it happened or why it didn't fully resolve as he doesn't have
                    > any
                    > > signs on the MRI/MRA of anything permanent. She hopes it will
                    > > continue to resolve, but it is still significantly weaker than the
                    > > left and it is completely numb...
                    > >
                    > > Has anyone else had something like this happen after surgery?
                    > >
                    > > Thanks,
                    > > Debbie
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