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Re: [Parenting Children with Moyamoya] Re: Juliana

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  • EDNA mojica
    Hi to all: This is my first time writing on this site, however I checked it out back in 1999 but didn t think anything of it because I thought that after my
    Message 1 of 12 , Jun 15, 2005
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      Hi to all:

      This is my first time writing on this site, however I checked it out back in 1999 but didn't think anything of it because I thought that after my surgery it wasn't going to come back.

      I am the person with the MM, I am a puerto rican mom of 2 kids (7 & 8 y/o), lives in Queens New York. I am 36 y/o, non-smoker, non-drug user, basically health & was diagnosed with this damn disease MM back in 1999 & immediatedly had a blockage removed on my left artery, it was preventing blood flowing from one side of my brain to the other. This all started because I was having my right hand side fall asleep after sex, it didn't happen all the time, but enough for me to go & check myself. After my Neurologist Dr. Schick performed some MRI's & also Surgeon (Dr. De Los Reyes), by the way, he was the only surgeon in New York able to diagnose MM. Now I am looking for him & he's no where to be found.

      So now, after that surgery was performed I assumed that I would be cured for ever, well was I wrong, thank god there's nothing paralyzed on my body, but have suffered 3 minor strokes. My numbness & weakness have come back about 2 years ago & again after sex (not as much though), but last month, as I played in the park with my kids, I was running back & tripped on my legs & fell & hit my head hard that my cell phone came off my waist, since this happened I started experimenting bluryness on my vision & numbness of my left leg that would make me fall.

      I have seen my Neurologist again since this & gotten MRI's done at the hospital but he doesn't know what to tell me, I am taking Ecotrin (aspiri) to thin out the blood. He's having a conference call tomorrow with other doctors at Beth Israel Medical Center in Manhattan to see what he can tell me.

      Please advise on any other medication out there.
      Thanks,
      Edna Mojica

      trekkierick2002 <trekkierick@...> wrote:
      Kevin,

      I've been reading your posts. I'm sorry about everything going on,
      but things seem to be looking on the up and up. This is my first
      time visiting the site in quite a while.
      My 5-year old daughter, Hayley, also has NF1 and MoyaMoya. She had
      surgery on May 13th, 2003, in Boston, and has been doing fantastic
      ever since. She received a wonderful report on her one-year follow
      up last June from Dr. Scott. Hayley only had to have surgery on her
      right side, her left side looked great. Dr. Scott asked us to have a
      yearly MRI to keep a check on the left side. Her MRI is scheduled
      for this Friday, June 17th. How old is Juliana? Hayley recovered
      from the surgery quick and still talks about all the wonderful
      people at BCH. She wants to know when she can go back and play in
      the play room and see Will, who also had surgery for MM the same day
      (hope you're reading this Ginny). Best of luck to you and your
      family, I will be praying for all of you. Please let me know if you
      have any questions, you can e-mail me at trekkierick@... if
      you want.

      Ricky

      --- In parentingchildrenwithmoyamoya@yahoogroups.com, Kevin Cave
      <kevin_c86@y...> wrote:
      > Dear Tom,
      >
      > Juliana has a condition called NF 1(neurofibromatosis) which gives
      her the need to have brain scans every 6 months. The problem that
      she has is that her left internal cardioid artery is not present,
      she was born this way. Obviously Dr Scott would be the person to
      make the decision about Mallory. I would absolutely follow his
      advice. I can tell you if he is suggesting that they do two
      separate surgeries that may make sense. Prior to this surgery my
      daughter has been under anesthesia 4 times before we even new of any
      risks. I have done a lot of research on this before I brought my
      daughter to Boston. This type operation is not like a heart by-pass
      where the results are immediate, the Brain needs to learn that there
      is a new source of blood flow. Please keep in mind that the
      Doctors are obligated to give you the worst possible scenario. If I
      can help you in any other way please do not hesitate to contact me.
      We will pray for Mallory.
      >
      > Kevin Cave
      >
      >
      > tlbusam@f... wrote:
      > Kevin,
      > Our daughter Mallory will be seeing Dr. Scott on June 16 for an
      evaulation. Would you mind telling me if Juliana had both sides
      operated on at the same time or under one anesthesia. I hope your
      daughter does wonderful in her recovery and best wishes.
      >
      > Tom Busam
      > >
      > > From: "kevin_c86" <kevin_c86@y...>
      > > Date: 2005/06/08 Wed AM 11:36:12 EDT
      > > To: parentingchildrenwithmoyamoya@yahoogroups.com
      > > Subject: [Parenting Children with Moyamoya] Juliana
      > >
      > > Juliana had her surgery yesterday with Dr. Scott. He was very
      happy
      > > with surgery and said it went even better then he thought.
      Juliana is
      > > still in the ICU but is recovering fast and will transfer to
      another
      > > roo this afternoon. Thank you all for your support.
      > >
      > > You've been invited to visit Juliana Cave's online CarePage.
      > > A personalized Web page, called a CarePage, has been created
      > > for Juliana, so you can easily receive
      > > the latest news, view photos and share messages of support.
      > >
      > > To visit the CarePage, please click the link below:
      > >
      > > http://www.carepages.com/ServeCarePage?cpn=julianacave
      > >
      > >
      > >
      > >
      > >
      > >
      > >
      > >
      > > Yahoo! Groups Links
      > >
      > >
      > >
      > >
      > >
      > >
      > >
      >
      >
      >
      > ---------------------------------
      > Yahoo! Groups Links
      >
      > To visit your group on the web, go to:
      > http://groups.yahoo.com/group/parentingchildrenwithmoyamoya/
      >
      > To unsubscribe from this group, send an email to:
      > parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com
      >
      > Your use of Yahoo! Groups is subject to the Yahoo! Terms of
      Service.
      >
      >
      >
      >
      >
      > ---------------------------------
      > Discover Yahoo!
      > Stay in touch with email, IM, photo sharing & more. Check it out!
      >
      > [Non-text portions of this message have been removed]





      ---------------------------------
      Yahoo! Groups Links

      To visit your group on the web, go to:
      http://groups.yahoo.com/group/parentingchildrenwithmoyamoya/

      To unsubscribe from this group, send an email to:
      parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com

      Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.


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    • Kevin Cave
      Thanks for your support, Juliana will be 4 on July 28, so far she has been doing fine, and has been difficult to keep at a slow pace. I was curios where you
      Message 2 of 12 , Jun 15, 2005
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        Thanks for your support,

        Juliana will be 4 on July 28, so far she has been doing fine, and has been difficult to keep at a slow pace. I was curios where you live, we live about 25 miles from Philadelphia. Juliana's NF doctor is at Children's Hospital of Pennsylvania and he has recommended that Juliana get MRI'S every 6 months to check for tumors on her optical nerve's, that is how we discovered the Moyamoya in the first place.

        Best Regards,

        Kevin Cave

        trekkierick2002 <trekkierick@...> wrote:
        Kevin,

        I've been reading your posts. I'm sorry about everything going on,
        but things seem to be looking on the up and up. This is my first
        time visiting the site in quite a while.
        My 5-year old daughter, Hayley, also has NF1 and MoyaMoya. She had
        surgery on May 13th, 2003, in Boston, and has been doing fantastic
        ever since. She received a wonderful report on her one-year follow
        up last June from Dr. Scott. Hayley only had to have surgery on her
        right side, her left side looked great. Dr. Scott asked us to have a
        yearly MRI to keep a check on the left side. Her MRI is scheduled
        for this Friday, June 17th. How old is Juliana? Hayley recovered
        from the surgery quick and still talks about all the wonderful
        people at BCH. She wants to know when she can go back and play in
        the play room and see Will, who also had surgery for MM the same day
        (hope you're reading this Ginny). Best of luck to you and your
        family, I will be praying for all of you. Please let me know if you
        have any questions, you can e-mail me at trekkierick@... if
        you want.

        Ricky

        --- In parentingchildrenwithmoyamoya@yahoogroups.com, Kevin Cave
        <kevin_c86@y...> wrote:
        > Dear Tom,
        >
        > Juliana has a condition called NF 1(neurofibromatosis) which gives
        her the need to have brain scans every 6 months. The problem that
        she has is that her left internal cardioid artery is not present,
        she was born this way. Obviously Dr Scott would be the person to
        make the decision about Mallory. I would absolutely follow his
        advice. I can tell you if he is suggesting that they do two
        separate surgeries that may make sense. Prior to this surgery my
        daughter has been under anesthesia 4 times before we even new of any
        risks. I have done a lot of research on this before I brought my
        daughter to Boston. This type operation is not like a heart by-pass
        where the results are immediate, the Brain needs to learn that there
        is a new source of blood flow. Please keep in mind that the
        Doctors are obligated to give you the worst possible scenario. If I
        can help you in any other way please do not hesitate to contact me.
        We will pray for Mallory.
        >
        > Kevin Cave
        >
        >
        > tlbusam@f... wrote:
        > Kevin,
        > Our daughter Mallory will be seeing Dr. Scott on June 16 for an
        evaulation. Would you mind telling me if Juliana had both sides
        operated on at the same time or under one anesthesia. I hope your
        daughter does wonderful in her recovery and best wishes.
        >
        > Tom Busam
        > >
        > > From: "kevin_c86" <kevin_c86@y...>
        > > Date: 2005/06/08 Wed AM 11:36:12 EDT
        > > To: parentingchildrenwithmoyamoya@yahoogroups.com
        > > Subject: [Parenting Children with Moyamoya] Juliana
        > >
        > > Juliana had her surgery yesterday with Dr. Scott. He was very
        happy
        > > with surgery and said it went even better then he thought.
        Juliana is
        > > still in the ICU but is recovering fast and will transfer to
        another
        > > roo this afternoon. Thank you all for your support.
        > >
        > > You've been invited to visit Juliana Cave's online CarePage.
        > > A personalized Web page, called a CarePage, has been created
        > > for Juliana, so you can easily receive
        > > the latest news, view photos and share messages of support.
        > >
        > > To visit the CarePage, please click the link below:
        > >
        > > http://www.carepages.com/ServeCarePage?cpn=julianacave
        > >
        > >
        > >
        > >
        > >
        > >
        > >
        > >
        > > Yahoo! Groups Links
        > >
        > >
        > >
        > >
        > >
        > >
        > >
        >
        >
        >
        > ---------------------------------
        > Yahoo! Groups Links
        >
        > To visit your group on the web, go to:
        > http://groups.yahoo.com/group/parentingchildrenwithmoyamoya/
        >
        > To unsubscribe from this group, send an email to:
        > parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com
        >
        > Your use of Yahoo! Groups is subject to the Yahoo! Terms of
        Service.
        >
        >
        >
        >
        >
        > ---------------------------------
        > Discover Yahoo!
        > Stay in touch with email, IM, photo sharing & more. Check it out!
        >
        > [Non-text portions of this message have been removed]





        ---------------------------------
        Yahoo! Groups Links

        To visit your group on the web, go to:
        http://groups.yahoo.com/group/parentingchildrenwithmoyamoya/

        To unsubscribe from this group, send an email to:
        parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com

        Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.




        ---------------------------------
        Discover Yahoo!
        Get on-the-go sports scores, stock quotes, news & more. Check it out!

        [Non-text portions of this message have been removed]
      • EDNA mojica
        Hi Kevin: I am glad that Juliana has been doing okay, this is so hard for us adults, I can only imagine for kids. As of right now, I don t even know what to
        Message 3 of 12 , Jun 16, 2005
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          Hi Kevin:
          I am glad that Juliana has been doing okay, this is so hard for us adults, I can only imagine for kids. As of right now, I don't even know what to do, I am getting my symptons every day, once or twice a day with nothing to do. I don't even know when I am going to suffer my weakness, I just take it when it comes. I live in Queens New York and the hospital where I had my surgery was in Beth Israel Medical Center in Manhattan.

          Regards,
          Edna Mojica


          Kevin Cave <kevin_c86@...> wrote:
          Thanks for your support,

          Juliana will be 4 on July 28, so far she has been doing fine, and has been difficult to keep at a slow pace. I was curios where you live, we live about 25 miles from Philadelphia. Juliana's NF doctor is at Children's Hospital of Pennsylvania and he has recommended that Juliana get MRI'S every 6 months to check for tumors on her optical nerve's, that is how we discovered the Moyamoya in the first place.

          Best Regards,

          Kevin Cave

          trekkierick2002 <trekkierick@...> wrote:
          Kevin,

          I've been reading your posts. I'm sorry about everything going on,
          but things seem to be looking on the up and up. This is my first
          time visiting the site in quite a while.
          My 5-year old daughter, Hayley, also has NF1 and MoyaMoya. She had
          surgery on May 13th, 2003, in Boston, and has been doing fantastic
          ever since. She received a wonderful report on her one-year follow
          up last June from Dr. Scott. Hayley only had to have surgery on her
          right side, her left side looked great. Dr. Scott asked us to have a
          yearly MRI to keep a check on the left side. Her MRI is scheduled
          for this Friday, June 17th. How old is Juliana? Hayley recovered
          from the surgery quick and still talks about all the wonderful
          people at BCH. She wants to know when she can go back and play in
          the play room and see Will, who also had surgery for MM the same day
          (hope you're reading this Ginny). Best of luck to you and your
          family, I will be praying for all of you. Please let me know if you
          have any questions, you can e-mail me at trekkierick@... if
          you want.

          Ricky

          --- In parentingchildrenwithmoyamoya@yahoogroups.com, Kevin Cave
          <kevin_c86@y...> wrote:
          > Dear Tom,
          >
          > Juliana has a condition called NF 1(neurofibromatosis) which gives
          her the need to have brain scans every 6 months. The problem that
          she has is that her left internal cardioid artery is not present,
          she was born this way. Obviously Dr Scott would be the person to
          make the decision about Mallory. I would absolutely follow his
          advice. I can tell you if he is suggesting that they do two
          separate surgeries that may make sense. Prior to this surgery my
          daughter has been under anesthesia 4 times before we even new of any
          risks. I have done a lot of research on this before I brought my
          daughter to Boston. This type operation is not like a heart by-pass
          where the results are immediate, the Brain needs to learn that there
          is a new source of blood flow. Please keep in mind that the
          Doctors are obligated to give you the worst possible scenario. If I
          can help you in any other way please do not hesitate to contact me.
          We will pray for Mallory.
          >
          > Kevin Cave
          >
          >
          > tlbusam@f... wrote:
          > Kevin,
          > Our daughter Mallory will be seeing Dr. Scott on June 16 for an
          evaulation. Would you mind telling me if Juliana had both sides
          operated on at the same time or under one anesthesia. I hope your
          daughter does wonderful in her recovery and best wishes.
          >
          > Tom Busam
          > >
          > > From: "kevin_c86" <kevin_c86@y...>
          > > Date: 2005/06/08 Wed AM 11:36:12 EDT
          > > To: parentingchildrenwithmoyamoya@yahoogroups.com
          > > Subject: [Parenting Children with Moyamoya] Juliana
          > >
          > > Juliana had her surgery yesterday with Dr. Scott. He was very
          happy
          > > with surgery and said it went even better then he thought.
          Juliana is
          > > still in the ICU but is recovering fast and will transfer to
          another
          > > roo this afternoon. Thank you all for your support.
          > >
          > > You've been invited to visit Juliana Cave's online CarePage.
          > > A personalized Web page, called a CarePage, has been created
          > > for Juliana, so you can easily receive
          > > the latest news, view photos and share messages of support.
          > >
          > > To visit the CarePage, please click the link below:
          > >
          > > http://www.carepages.com/ServeCarePage?cpn=julianacave
          > >
          > >
          > >
          > >
          > >
          > >
          > >
          > >
          > > Yahoo! Groups Links
          > >
          > >
          > >
          > >
          > >
          > >
          > >
          >
          >
          >
          > ---------------------------------
          > Yahoo! Groups Links
          >
          > To visit your group on the web, go to:
          > http://groups.yahoo.com/group/parentingchildrenwithmoyamoya/
          >
          > To unsubscribe from this group, send an email to:
          > parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com
          >
          > Your use of Yahoo! Groups is subject to the Yahoo! Terms of
          Service.
          >
          >
          >
          >
          >
          > ---------------------------------
          > Discover Yahoo!
          > Stay in touch with email, IM, photo sharing & more. Check it out!
          >
          > [Non-text portions of this message have been removed]





          ---------------------------------
          Yahoo! Groups Links

          To visit your group on the web, go to:
          http://groups.yahoo.com/group/parentingchildrenwithmoyamoya/

          To unsubscribe from this group, send an email to:
          parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com

          Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.




          ---------------------------------
          Discover Yahoo!
          Get on-the-go sports scores, stock quotes, news & more. Check it out!

          [Non-text portions of this message have been removed]



          ---------------------------------
          Yahoo! Groups Links

          To visit your group on the web, go to:
          http://groups.yahoo.com/group/parentingchildrenwithmoyamoya/

          To unsubscribe from this group, send an email to:
          parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com

          Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.


          __________________________________________________
          Do You Yahoo!?
          Tired of spam? Yahoo! Mail has the best spam protection around
          http://mail.yahoo.com

          [Non-text portions of this message have been removed]
        • trekkierick2002
          Kevin, Glad to hear Juliana is doing well. We live in Virginia, about 45 miles north-west of Roanoke. Hayley s neurologist is in Roanoke. She had never had a
          Message 4 of 12 , Jun 16, 2005
          • 0 Attachment
            Kevin,

            Glad to hear Juliana is doing well. We live in Virginia, about 45
            miles north-west of Roanoke. Hayley's neurologist is in Roanoke. She
            had never had a MRI until the TIA that she had on 2/1/03. She then
            MRIs in Oct '03 and one in May '04. Everything has been looking
            great so far. Will Juliana need surgery on the other side?

            Regards,
            Ricky

            --- In parentingchildrenwithmoyamoya@yahoogroups.com, Kevin Cave
            <kevin_c86@y...> wrote:
            > Thanks for your support,
            >
            > Juliana will be 4 on July 28, so far she has been doing fine, and
            has been difficult to keep at a slow pace. I was curios where you
            live, we live about 25 miles from Philadelphia. Juliana's NF doctor
            is at Children's Hospital of Pennsylvania and he has recommended
            that Juliana get MRI'S every 6 months to check for tumors on her
            optical nerve's, that is how we discovered the Moyamoya in the first
            place.
            >
            > Best Regards,
            >
            > Kevin Cave
            >
            > trekkierick2002 <trekkierick@n...> wrote:
            > Kevin,
            >
            > I've been reading your posts. I'm sorry about everything going on,
            > but things seem to be looking on the up and up. This is my first
            > time visiting the site in quite a while.
            > My 5-year old daughter, Hayley, also has NF1 and MoyaMoya. She had
            > surgery on May 13th, 2003, in Boston, and has been doing fantastic
            > ever since. She received a wonderful report on her one-year follow
            > up last June from Dr. Scott. Hayley only had to have surgery on
            her
            > right side, her left side looked great. Dr. Scott asked us to have
            a
            > yearly MRI to keep a check on the left side. Her MRI is scheduled
            > for this Friday, June 17th. How old is Juliana? Hayley recovered
            > from the surgery quick and still talks about all the wonderful
            > people at BCH. She wants to know when she can go back and play in
            > the play room and see Will, who also had surgery for MM the same
            day
            > (hope you're reading this Ginny). Best of luck to you and your
            > family, I will be praying for all of you. Please let me know if
            you
            > have any questions, you can e-mail me at trekkierick@n... if
            > you want.
            >
            > Ricky
            >
            > --- In parentingchildrenwithmoyamoya@yahoogroups.com, Kevin Cave
            > <kevin_c86@y...> wrote:
            > > Dear Tom,
            > >
            > > Juliana has a condition called NF 1(neurofibromatosis) which
            gives
            > her the need to have brain scans every 6 months. The problem that
            > she has is that her left internal cardioid artery is not present,
            > she was born this way. Obviously Dr Scott would be the person to
            > make the decision about Mallory. I would absolutely follow his
            > advice. I can tell you if he is suggesting that they do two
            > separate surgeries that may make sense. Prior to this surgery my
            > daughter has been under anesthesia 4 times before we even new of
            any
            > risks. I have done a lot of research on this before I brought my
            > daughter to Boston. This type operation is not like a heart by-
            pass
            > where the results are immediate, the Brain needs to learn that
            there
            > is a new source of blood flow. Please keep in mind that the
            > Doctors are obligated to give you the worst possible scenario. If
            I
            > can help you in any other way please do not hesitate to contact
            me.
            > We will pray for Mallory.
            > >
            > > Kevin Cave
            > >
            > >
            > > tlbusam@f... wrote:
            > > Kevin,
            > > Our daughter Mallory will be seeing Dr. Scott on June 16 for an
            > evaulation. Would you mind telling me if Juliana had both sides
            > operated on at the same time or under one anesthesia. I hope your
            > daughter does wonderful in her recovery and best wishes.
            > >
            > > Tom Busam
            > > >
            > > > From: "kevin_c86" <kevin_c86@y...>
            > > > Date: 2005/06/08 Wed AM 11:36:12 EDT
            > > > To: parentingchildrenwithmoyamoya@yahoogroups.com
            > > > Subject: [Parenting Children with Moyamoya] Juliana
            > > >
            > > > Juliana had her surgery yesterday with Dr. Scott. He was very
            > happy
            > > > with surgery and said it went even better then he thought.
            > Juliana is
            > > > still in the ICU but is recovering fast and will transfer to
            > another
            > > > roo this afternoon. Thank you all for your support.
            > > >
            > > > You've been invited to visit Juliana Cave's online CarePage.
            > > > A personalized Web page, called a CarePage, has been created
            > > > for Juliana, so you can easily receive
            > > > the latest news, view photos and share messages of support.
            > > >
            > > > To visit the CarePage, please click the link below:
            > > >
            > > > http://www.carepages.com/ServeCarePage?cpn=julianacave
            > > >
            > > >
            > > >
            > > >
            > > >
            > > >
            > > >
            > > >
            > > > Yahoo! Groups Links
            > > >
            > > >
            > > >
            > > >
            > > >
            > > >
            > > >
            > >
            > >
            > >
            > > ---------------------------------
            > > Yahoo! Groups Links
            > >
            > > To visit your group on the web, go to:
            > > http://groups.yahoo.com/group/parentingchildrenwithmoyamoya/
            > >
            > > To unsubscribe from this group, send an email to:
            > > parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com
            > >
            > > Your use of Yahoo! Groups is subject to the Yahoo! Terms of
            > Service.
            > >
            > >
            > >
            > >
            > >
            > > ---------------------------------
            > > Discover Yahoo!
            > > Stay in touch with email, IM, photo sharing & more. Check it
            out!
            > >
            > > [Non-text portions of this message have been removed]
            >
            >
            >
            >
            >
            > ---------------------------------
            > Yahoo! Groups Links
            >
            > To visit your group on the web, go to:
            > http://groups.yahoo.com/group/parentingchildrenwithmoyamoya/
            >
            > To unsubscribe from this group, send an email to:
            > parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com
            >
            > Your use of Yahoo! Groups is subject to the Yahoo! Terms of
            Service.
            >
            >
            >
            >
            > ---------------------------------
            > Discover Yahoo!
            > Get on-the-go sports scores, stock quotes, news & more. Check it
            out!
            >
            > [Non-text portions of this message have been removed]
          • dareinhart@yahoo.com
            ... Edna, even though you are an adult, you can still contact Dr. Scott at Boston Children s hospital. You could also ask your doctors to consult with him.
            Message 5 of 12 , Jun 16, 2005
            • 0 Attachment
              --- EDNA mojica <jasjosh2003@...> wrote:
              Edna, even though you are an adult, you can still
              contact Dr. Scott at Boston Children's hospital. You
              could also ask your doctors to consult with him. Dr.
              Steinberg in California at Stanford is spoken highly
              of by many adults -- but he is on the other coast, so
              Dr. Scott might be easier to get to.

              You can send him an e-mail, just look him up on the
              Boston Neurological Society list.

              Hope you get some answers soon.

              Denyse


              > Hi Kevin:
              > I am glad that Juliana has been doing okay, this is
              > so hard for us adults, I can only imagine for kids.
              > As of right now, I don't even know what to do, I am
              > getting my symptons every day, once or twice a day
              > with nothing to do. I don't even know when I am
              > going to suffer my weakness, I just take it when it
              > comes. I live in Queens New York and the hospital
              > where I had my surgery was in Beth Israel Medical
              > Center in Manhattan.
              >
              > Regards,
              > Edna Mojica
              >
              >
              > Kevin Cave <kevin_c86@...> wrote:
              > Thanks for your support,
              >
              > Juliana will be 4 on July 28, so far she has been
              > doing fine, and has been difficult to keep at a slow
              > pace. I was curios where you live, we live about 25
              > miles from Philadelphia. Juliana's NF doctor is at
              > Children's Hospital of Pennsylvania and he has
              > recommended that Juliana get MRI'S every 6 months to
              > check for tumors on her optical nerve's, that is how
              > we discovered the Moyamoya in the first place.
              >
              > Best Regards,
              >
              > Kevin Cave
              >
              > trekkierick2002 <trekkierick@...> wrote:
              > Kevin,
              >
              > I've been reading your posts. I'm sorry about
              > everything going on,
              > but things seem to be looking on the up and up. This
              > is my first
              > time visiting the site in quite a while.
              > My 5-year old daughter, Hayley, also has NF1 and
              > MoyaMoya. She had
              > surgery on May 13th, 2003, in Boston, and has been
              > doing fantastic
              > ever since. She received a wonderful report on her
              > one-year follow
              > up last June from Dr. Scott. Hayley only had to have
              > surgery on her
              > right side, her left side looked great. Dr. Scott
              > asked us to have a
              > yearly MRI to keep a check on the left side. Her MRI
              > is scheduled
              > for this Friday, June 17th. How old is Juliana?
              > Hayley recovered
              > from the surgery quick and still talks about all the
              > wonderful
              > people at BCH. She wants to know when she can go
              > back and play in
              > the play room and see Will, who also had surgery for
              > MM the same day
              > (hope you're reading this Ginny). Best of luck to
              > you and your
              > family, I will be praying for all of you. Please let
              > me know if you
              > have any questions, you can e-mail me at
              > trekkierick@... if
              > you want.
              >
              > Ricky
              >
              > --- In
              > parentingchildrenwithmoyamoya@yahoogroups.com, Kevin
              > Cave
              > <kevin_c86@y...> wrote:
              > > Dear Tom,
              > >
              > > Juliana has a condition called NF
              > 1(neurofibromatosis) which gives
              > her the need to have brain scans every 6 months. The
              > problem that
              > she has is that her left internal cardioid artery is
              > not present,
              > she was born this way. Obviously Dr Scott would be
              > the person to
              > make the decision about Mallory. I would absolutely
              > follow his
              > advice. I can tell you if he is suggesting that
              > they do two
              > separate surgeries that may make sense. Prior to
              > this surgery my
              > daughter has been under anesthesia 4 times before we
              > even new of any
              > risks. I have done a lot of research on this before
              > I brought my
              > daughter to Boston. This type operation is not like
              > a heart by-pass
              > where the results are immediate, the Brain needs to
              > learn that there
              > is a new source of blood flow. Please keep in mind
              > that the
              > Doctors are obligated to give you the worst possible
              > scenario. If I
              > can help you in any other way please do not hesitate
              > to contact me.
              > We will pray for Mallory.
              > >
              > > Kevin Cave
              > >
              > >
              > > tlbusam@f... wrote:
              > > Kevin,
              > > Our daughter Mallory will be seeing Dr. Scott on
              > June 16 for an
              > evaulation. Would you mind telling me if Juliana
              > had both sides
              > operated on at the same time or under one
              > anesthesia. I hope your
              > daughter does wonderful in her recovery and best
              > wishes.
              > >
              > > Tom Busam
              > > >
              > > > From: "kevin_c86" <kevin_c86@y...>
              > > > Date: 2005/06/08 Wed AM 11:36:12 EDT
              > > > To:
              > parentingchildrenwithmoyamoya@yahoogroups.com
              > > > Subject: [Parenting Children with Moyamoya]
              > Juliana
              > > >
              > > > Juliana had her surgery yesterday with Dr.
              > Scott. He was very
              > happy
              > > > with surgery and said it went even better then
              > he thought.
              > Juliana is
              > > > still in the ICU but is recovering fast and will
              > transfer to
              > another
              > > > roo this afternoon. Thank you all for your
              > support.
              > > >
              > > > You've been invited to visit Juliana Cave's
              > online CarePage.
              > > > A personalized Web page, called a CarePage, has
              > been created
              > > > for Juliana, so you can easily receive
              > > > the latest news, view photos and share messages
              > of support.
              > > >
              > > > To visit the CarePage, please click the link
              > below:
              > > >
              > > >
              >
              http://www.carepages.com/ServeCarePage?cpn=julianacave
              > > >
              > > >
              > > >
              > > >
              > > >
              > > >
              > > >
              > > >
              > > > Yahoo! Groups Links
              > > >
              > > >
              > > >
              > > >
              > > >
              > > >
              > > >
              > >
              > >
              > >
              > > ---------------------------------
              > > Yahoo! Groups Links
              > >
              > > To visit your group on the web, go to:
              > >
              >
              http://groups.yahoo.com/group/parentingchildrenwithmoyamoya/
              > >
              > > To unsubscribe from this group, send an email
              > to:
              > >
              >
              parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com
              > >
              > > Your use of Yahoo! Groups is subject to the
              > Yahoo! Terms of
              > Service.
              > >
              > >
              > >
              > >
              > >
              > > ---------------------------------
              > > Discover Yahoo!
              > > Stay in touch with email, IM, photo sharing &
              > more. Check it out!
              > >
              > > [Non-text portions of this message have been
              > removed]
              >
              >
              >
              === message truncated ===




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            • mandy harmon
              My daughter is again experiencing some similiar issues, we are now putting her on oxygen for the symptoms Mandy
              Message 6 of 12 , Jun 20, 2005
              • 0 Attachment
                My daughter is again experiencing some similiar issues, we are now putting
                her on oxygen for the symptoms

                Mandy

                >From: EDNA mojica <jasjosh2003@...>
                >Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
                >To: parentingchildrenwithmoyamoya@yahoogroups.com
                >Subject: Re: [Parenting Children with Moyamoya] Re: Juliana
                >Date: Wed, 15 Jun 2005 12:31:22 -0700 (PDT)
                >
                >Hi to all:
                >
                >This is my first time writing on this site, however I checked it out back
                >in 1999 but didn't think anything of it because I thought that after my
                >surgery it wasn't going to come back.
                >
                >I am the person with the MM, I am a puerto rican mom of 2 kids (7 & 8 y/o),
                >lives in Queens New York. I am 36 y/o, non-smoker, non-drug user, basically
                >health & was diagnosed with this damn disease MM back in 1999 &
                >immediatedly had a blockage removed on my left artery, it was preventing
                >blood flowing from one side of my brain to the other. This all started
                >because I was having my right hand side fall asleep after sex, it didn't
                >happen all the time, but enough for me to go & check myself. After my
                >Neurologist Dr. Schick performed some MRI's & also Surgeon (Dr. De Los
                >Reyes), by the way, he was the only surgeon in New York able to diagnose
                >MM. Now I am looking for him & he's no where to be found.
                >
                >So now, after that surgery was performed I assumed that I would be cured
                >for ever, well was I wrong, thank god there's nothing paralyzed on my body,
                >but have suffered 3 minor strokes. My numbness & weakness have come back
                >about 2 years ago & again after sex (not as much though), but last month,
                >as I played in the park with my kids, I was running back & tripped on my
                >legs & fell & hit my head hard that my cell phone came off my waist, since
                >this happened I started experimenting bluryness on my vision & numbness of
                >my left leg that would make me fall.
                >
                >I have seen my Neurologist again since this & gotten MRI's done at the
                >hospital but he doesn't know what to tell me, I am taking Ecotrin (aspiri)
                >to thin out the blood. He's having a conference call tomorrow with other
                >doctors at Beth Israel Medical Center in Manhattan to see what he can tell
                >me.
                >
                >Please advise on any other medication out there.
                >Thanks,
                >Edna Mojica
                >
                >trekkierick2002 <trekkierick@...> wrote:
                >Kevin,
                >
                >I've been reading your posts. I'm sorry about everything going on,
                >but things seem to be looking on the up and up. This is my first
                >time visiting the site in quite a while.
                >My 5-year old daughter, Hayley, also has NF1 and MoyaMoya. She had
                >surgery on May 13th, 2003, in Boston, and has been doing fantastic
                >ever since. She received a wonderful report on her one-year follow
                >up last June from Dr. Scott. Hayley only had to have surgery on her
                >right side, her left side looked great. Dr. Scott asked us to have a
                >yearly MRI to keep a check on the left side. Her MRI is scheduled
                >for this Friday, June 17th. How old is Juliana? Hayley recovered
                >from the surgery quick and still talks about all the wonderful
                >people at BCH. She wants to know when she can go back and play in
                >the play room and see Will, who also had surgery for MM the same day
                >(hope you're reading this Ginny). Best of luck to you and your
                >family, I will be praying for all of you. Please let me know if you
                >have any questions, you can e-mail me at trekkierick@... if
                >you want.
                >
                >Ricky
                >
                >--- In parentingchildrenwithmoyamoya@yahoogroups.com, Kevin Cave
                ><kevin_c86@y...> wrote:
                > > Dear Tom,
                > >
                > > Juliana has a condition called NF 1(neurofibromatosis) which gives
                >her the need to have brain scans every 6 months. The problem that
                >she has is that her left internal cardioid artery is not present,
                >she was born this way. Obviously Dr Scott would be the person to
                >make the decision about Mallory. I would absolutely follow his
                >advice. I can tell you if he is suggesting that they do two
                >separate surgeries that may make sense. Prior to this surgery my
                >daughter has been under anesthesia 4 times before we even new of any
                >risks. I have done a lot of research on this before I brought my
                >daughter to Boston. This type operation is not like a heart by-pass
                >where the results are immediate, the Brain needs to learn that there
                >is a new source of blood flow. Please keep in mind that the
                >Doctors are obligated to give you the worst possible scenario. If I
                >can help you in any other way please do not hesitate to contact me.
                >We will pray for Mallory.
                > >
                > > Kevin Cave
                > >
                > >
                > > tlbusam@f... wrote:
                > > Kevin,
                > > Our daughter Mallory will be seeing Dr. Scott on June 16 for an
                >evaulation. Would you mind telling me if Juliana had both sides
                >operated on at the same time or under one anesthesia. I hope your
                >daughter does wonderful in her recovery and best wishes.
                > >
                > > Tom Busam
                > > >
                > > > From: "kevin_c86" <kevin_c86@y...>
                > > > Date: 2005/06/08 Wed AM 11:36:12 EDT
                > > > To: parentingchildrenwithmoyamoya@yahoogroups.com
                > > > Subject: [Parenting Children with Moyamoya] Juliana
                > > >
                > > > Juliana had her surgery yesterday with Dr. Scott. He was very
                >happy
                > > > with surgery and said it went even better then he thought.
                >Juliana is
                > > > still in the ICU but is recovering fast and will transfer to
                >another
                > > > roo this afternoon. Thank you all for your support.
                > > >
                > > > You've been invited to visit Juliana Cave's online CarePage.
                > > > A personalized Web page, called a CarePage, has been created
                > > > for Juliana, so you can easily receive
                > > > the latest news, view photos and share messages of support.
                > > >
                > > > To visit the CarePage, please click the link below:
                > > >
                > > > http://www.carepages.com/ServeCarePage?cpn=julianacave
                > > >
                > > >
                > > >
                > > >
                > > >
                > > >
                > > >
                > > >
                > > > Yahoo! Groups Links
                > > >
                > > >
                > > >
                > > >
                > > >
                > > >
                > > >
                > >
                > >
                > >
                > > ---------------------------------
                > > Yahoo! Groups Links
                > >
                > > To visit your group on the web, go to:
                > > http://groups.yahoo.com/group/parentingchildrenwithmoyamoya/
                > >
                > > To unsubscribe from this group, send an email to:
                > > parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com
                > >
                > > Your use of Yahoo! Groups is subject to the Yahoo! Terms of
                >Service.
                > >
                > >
                > >
                > >
                > >
                > > ---------------------------------
                > > Discover Yahoo!
                > > Stay in touch with email, IM, photo sharing & more. Check it out!
                > >
                > > [Non-text portions of this message have been removed]
                >
                >
                >
                >
                >
                >---------------------------------
                >Yahoo! Groups Links
                >
                > To visit your group on the web, go to:
                >http://groups.yahoo.com/group/parentingchildrenwithmoyamoya/
                >
                > To unsubscribe from this group, send an email to:
                >parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com
                >
                > Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
                >
                >
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