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I am cleaning up the spam

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  • leilei543
    Hello Everyone... Im sorry to see this group being attacked by spam. When my son was diagnosed with moyamoya in 2001 I desperately wanted to speak to others
    Message 1 of 16 , Jan 10, 2008
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      Hello Everyone... Im sorry to see this group being attacked by spam.
      When my son was diagnosed with moyamoya in 2001 I desperately wanted to
      speak to others who were experiencing the same thing and started this
      group. It was a great resource to me at that time and I met many very
      helpful positive parents through this group. I was terribly
      disappointed to come back several years later and see it bombarded with
      spam. So if any of the members who found this group useful are still
      around I would love for you to return. I would like to hear how your
      children are doing. I am working on cleaning up the spam and have
      locked down the membership to those who are approved so that should
      prevent future spam from being posted.

      Once again I would like to apologize to all of you and I hope that you
      return.
    • ilovemybulldog@aol.com
      Oh how wonderful!!!! there is life out there and not just spammers!!! Hello everyone AGAIN :) I am Sara, mother to Keith who has a variant of moyamoya that
      Message 2 of 16 , Jan 10, 2008
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        Oh how wonderful!!!! there is life out there and not just spammers!!!
        Hello everyone AGAIN :)

        I am Sara, mother to Keith who has a variant of moyamoya that includes the
        back of the brain with two complete occlusions to the cerebral arteries., I
        myself have a congenital hypoplastic P1 segment of the Circle of Willis w/left
        cerebral artery smaller then the right.... My sister's son Jason, also has
        moyamoya, as well as my half brother from my mother's side. We were adopted as
        children so we are unsure of the status of the other kids.... but thankfully
        we found each other.. Keith was diagnosed in Jan of 06, surgery March 06.
        Jason had his diagnosis in 07 and surgery in June of 07 ( both were treated by
        the wonderful and caring staff of Dr Steinberg and Stanford University)

        For Parents of kids with strokes or have learning disabilities because of
        strokes.... there is a federal although state run through the school system
        called Vocational Rehabilitation... my son was just approved for a FULL 4 year
        degree college scholarship!!! It is a program to help individuals not be
        completely dependant on their SSI for the rest of their lives... anyone can
        apply... they provided for all of his books and will help him obtain a job... it
        doesn't matter what the disability is... the colleges have disability offices
        that help with tutors and anything the child needs.....if it wasn't for Miami
        Dade College ACESS LAB I would have never have known this!!!

        Also... if any moyamoya patient was a military dependant... diagnosed before
        21 or 23 if in college.. they are eligible for dependency beyond the normal
        age... My son was just approved for this although he is 23, and if he still
        has moyamoya and a heart condition and we provide over 50% of his care (
        house, rent, living expenses) in July of 2012,,,,,

        Thought I would pass this valuable information on..... if anyone has any
        questions.. please feel free to write me personally.

        Sara


        In a message dated 1/10/2008 2:47:07 P.M. Eastern Standard Time,
        no_reply@yahoogroups.com writes:




        Hello Everyone... Im sorry to see this group being attacked by spam.
        When my son was diagnosed with moyamoya in 2001 I desperately wanted to
        speak to others who were experiencing the same thing and started this
        group. It was a great resource to me at that time and I met many very
        helpful positive parents through this group. I was terribly
        disappointed to come back several years later and see it bombarded with
        spam. So if any of the members who found this group useful are still
        around I would love for you to return. I would like to hear how your
        children are doing. I am working on cleaning up the spam and have
        locked down the membership to those who are approved so that should
        prevent future spam from being posted.

        Once again I would like to apologize to all of you and I hope that you
        return.









        **************Start the year off right. Easy ways to stay in shape.
        http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489


        [Non-text portions of this message have been removed]
      • Nancy McStravick
        That s fantastic news. It s so upsetting to see all these horrible messages coming through. Thank you To: parentingchildrenwithmoyamoya@yahoogroups.comFrom:
        Message 3 of 16 , Jan 10, 2008
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          That's fantastic news.
          It's so upsetting to see all these horrible messages coming through.
          Thank you


          To: parentingchildrenwithmoyamoya@yahoogroups.comFrom: no_reply@yahoogroups.comDate: Thu, 10 Jan 2008 19:46:47 +0000Subject: [Parenting Children with Moyamoya] I am cleaning up the spam




          Hello Everyone... Im sorry to see this group being attacked by spam. When my son was diagnosed with moyamoya in 2001 I desperately wanted to speak to others who were experiencing the same thing and started this group. It was a great resource to me at that time and I met many very helpful positive parents through this group. I was terribly disappointed to come back several years later and see it bombarded with spam. So if any of the members who found this group useful are still around I would love for you to return. I would like to hear how your children are doing. I am working on cleaning up the spam and have locked down the membership to those who are approved so that should prevent future spam from being posted.Once again I would like to apologize to all of you and I hope that you return.






          _________________________________________________________________
          Get Hotmail on your mobile, text MSN to 63463!
          http://mobile.uk.msn.com/pc/mail.aspx

          [Non-text portions of this message have been removed]
        • Kevin Cave
          To us also, please let us know if we can help. Nancy McStravick wrote: That s fantastic news. It s so upsetting to see all these
          Message 4 of 16 , Jan 10, 2008
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            To us also, please let us know if we can help.

            Nancy McStravick <nancymcstravick@...> wrote:
            That's fantastic news.
            It's so upsetting to see all these horrible messages coming through.
            Thank you

            To: parentingchildrenwithmoyamoya@yahoogroups.comFrom: no_reply@yahoogroups.comDate: Thu, 10 Jan 2008 19:46:47 +0000Subject: [Parenting Children with Moyamoya] I am cleaning up the spam

            Hello Everyone... Im sorry to see this group being attacked by spam. When my son was diagnosed with moyamoya in 2001 I desperately wanted to speak to others who were experiencing the same thing and started this group. It was a great resource to me at that time and I met many very helpful positive parents through this group. I was terribly disappointed to come back several years later and see it bombarded with spam. So if any of the members who found this group useful are still around I would love for you to return. I would like to hear how your children are doing. I am working on cleaning up the spam and have locked down the membership to those who are approved so that should prevent future spam from being posted.Once again I would like to apologize to all of you and I hope that you return.

            __________________________________________________________
            Get Hotmail on your mobile, text MSN to 63463!
            http://mobile.uk.msn.com/pc/mail.aspx

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






            Best Regards,

            Kevin M. Cave

            ---------------------------------
            Never miss a thing. Make Yahoo your homepage.

            [Non-text portions of this message have been removed]
          • R .OTHMAN
            Hello everyone, I wrote in in 2006/07 because my 12 year old daughter had just been diagonised with moyamoya and this site was wonderful in supporting and
            Message 5 of 16 , Jan 11, 2008
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              Hello everyone,
              I wrote in in 2006/07 because my 12 year old daughter had just been diagonised with moyamoya and this site was wonderful in supporting and giving my family resources on the disease.As you said it was just horrid to see people take advantage of the website.
              Since I last wrote in, I am pleased to say that my daughter Alia has undergone surgery twice with Dr Scott(Children's hospital Boston) and she is in recovery for the right frontal lobe as we speak.She is doing well and I can't praise the doctors and nursing staff enough; they are so good at what they do, you just feel taken care of.
              I'll write more later cause i'm on shared p.c. and others need to use it
              P.S. Special thanks to DJ for his wonderful site!!
              Ruwaida Othman
              ----- Original Message ----
              From: Kevin Cave <kevin_c86@...>
              To: parentingchildrenwithmoyamoya@yahoogroups.com
              Sent: Thursday, January 10, 2008 7:40:39 PM
              Subject: RE: [Parenting Children with Moyamoya] I am cleaning up the spam

              To us also, please let us know if we can help.

              Nancy McStravick <nancymcstravick@ hotmail.com> wrote:
              That's fantastic news.
              It's so upsetting to see all these horrible messages coming through.
              Thank you

              To: parentingchildrenwi thmoyamoya@ yahoogroups. comFrom: no_reply@yahoogroup s.comDate: Thu, 10 Jan 2008 19:46:47 +0000Subject: [Parenting Children with Moyamoya] I am cleaning up the spam

              Hello Everyone... Im sorry to see this group being attacked by spam. When my son was diagnosed with moyamoya in 2001 I desperately wanted to speak to others who were experiencing the same thing and started this group. It was a great resource to me at that time and I met many very helpful positive parents through this group. I was terribly disappointed to come back several years later and see it bombarded with spam. So if any of the members who found this group useful are still around I would love for you to return. I would like to hear how your children are doing. I am working on cleaning up the spam and have locked down the membership to those who are approved so that should prevent future spam from being posted.Once again I would like to apologize to all of you and I hope that you return.

              ____________ _________ _________ _________ _________ _________ _
              Get Hotmail on your mobile, text MSN to 63463!
              http://mobile. uk.msn.com/ pc/mail.aspx

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

              Best Regards,

              Kevin M. Cave

              ------------ --------- --------- ---
              Never miss a thing. Make Yahoo your homepage.

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





              ____________________________________________________________________________________
              Looking for last minute shopping deals?
              Find them fast with Yahoo! Search. http://tools.search.yahoo.com/newsearch/category.php?category=shopping

              [Non-text portions of this message have been removed]
            • Kevin Cave
              I am so glad to hear of the progress, there are a bunch of us that have been in the same situation I will pray for you and your daughter. R .OTHMAN
              Message 6 of 16 , Jan 11, 2008
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                I am so glad to hear of the progress, there are a bunch of us that have been in the same situation I will pray for you and your daughter.

                "R .OTHMAN" <idamedi@...> wrote: Hello everyone,
                I wrote in in 2006/07 because my 12 year old daughter had just been diagonised with moyamoya and this site was wonderful in supporting and giving my family resources on the disease.As you said it was just horrid to see people take advantage of the website.
                Since I last wrote in, I am pleased to say that my daughter Alia has undergone surgery twice with Dr Scott(Children's hospital Boston) and she is in recovery for the right frontal lobe as we speak.She is doing well and I can't praise the doctors and nursing staff enough; they are so good at what they do, you just feel taken care of.
                I'll write more later cause i'm on shared p.c. and others need to use it
                P.S. Special thanks to DJ for his wonderful site!!
                Ruwaida Othman
                ----- Original Message ----
                From: Kevin Cave <kevin_c86@...>
                To: parentingchildrenwithmoyamoya@yahoogroups.com
                Sent: Thursday, January 10, 2008 7:40:39 PM
                Subject: RE: [Parenting Children with Moyamoya] I am cleaning up the spam

                To us also, please let us know if we can help.

                Nancy McStravick <nancymcstravick@ hotmail.com> wrote:
                That's fantastic news.
                It's so upsetting to see all these horrible messages coming through.
                Thank you

                To: parentingchildrenwi thmoyamoya@ yahoogroups. comFrom: no_reply@yahoogroup s.comDate: Thu, 10 Jan 2008 19:46:47 +0000Subject: [Parenting Children with Moyamoya] I am cleaning up the spam

                Hello Everyone... Im sorry to see this group being attacked by spam. When my son was diagnosed with moyamoya in 2001 I desperately wanted to speak to others who were experiencing the same thing and started this group. It was a great resource to me at that time and I met many very helpful positive parents through this group. I was terribly disappointed to come back several years later and see it bombarded with spam. So if any of the members who found this group useful are still around I would love for you to return. I would like to hear how your children are doing. I am working on cleaning up the spam and have locked down the membership to those who are approved so that should prevent future spam from being posted.Once again I would like to apologize to all of you and I hope that you return.

                ____________ _________ _________ _________ _________ _________ _
                Get Hotmail on your mobile, text MSN to 63463!
                http://mobile. uk.msn.com/ pc/mail.aspx

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

                Best Regards,

                Kevin M. Cave

                ------------ --------- --------- ---
                Never miss a thing. Make Yahoo your homepage.

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

                __________________________________________________________
                Looking for last minute shopping deals?
                Find them fast with Yahoo! Search. http://tools.search.yahoo.com/newsearch/category.php?category=shopping

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






                Best Regards,

                Kevin M. Cave

                ---------------------------------
                Looking for last minute shopping deals? Find them fast with Yahoo! Search.

                [Non-text portions of this message have been removed]
              • Jane
                ... Hi everyone i do hope the spam goes as i dont like to use this site anymore because of it. It really helped when Chloe was first diagnosed, its sad that
                Message 7 of 16 , Jan 13, 2008
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                  --- In parentingchildrenwithmoyamoya@yahoogroups.com, leilei543
                  <no_reply@...> wrote:
                  >
                  > Hello Everyone... Im sorry to see this group being attacked by spam.
                  > When my son was diagnosed with moyamoya in 2001 I desperately wanted to
                  > speak to others who were experiencing the same thing and started this
                  > group. It was a great resource to me at that time and I met many very
                  > helpful positive parents through this group. I was terribly
                  > disappointed to come back several years later and see it bombarded with
                  > spam. So if any of the members who found this group useful are still
                  > around I would love for you to return. I would like to hear how your
                  > children are doing. I am working on cleaning up the spam and have
                  > locked down the membership to those who are approved so that should
                  > prevent future spam from being posted.
                  >
                  > Once again I would like to apologize to all of you and I hope that you
                  > return.
                  >

                  Hi everyone i do hope the spam goes as i dont like to use this site
                  anymore because of it. It really helped when Chloe was first
                  diagnosed, its sad that people are using this site for filth.
                  Jane
                • Laurie Park
                  Thank you, Jane, for taking action! My daughter, Samantha, had bilateral revascularization performed by Dr. Scott (yes, we too worship him and his staff!) in
                  Message 8 of 16 , Jan 14, 2008
                  • 0 Attachment
                    Thank you, Jane, for taking action!

                    My daughter, Samantha, had bilateral revascularization performed by Dr. Scott (yes, we too worship him and his staff!) in July, 2005. She was 7 yrs old at the time. Her recovery has been wonderful. Her migraine-like headaches are decreasing to an average of once every 1-2 months. The only scare we had was last summer when she had a fleeting TIA at home. Her aspirin was increased to 2x/day and she seems to be fine since.

                    I was wondering if anyone has been participating in the research project that was discussed on DJ's site several months ago? I think it was through a university/hospital in Arizona (?).
                    I had considered it at the time but then got distracted with more immediate events and never pursued it.

                    Here's to a happy and HEALTHY New Year for everyone!!
                    Laurie

                    Jane <ginger090177@...> wrote:
                    --- In parentingchildrenwithmoyamoya@yahoogroups.com, leilei543
                    <no_reply@...> wrote:
                    >
                    > Hello Everyone... Im sorry to see this group being attacked by spam.
                    > When my son was diagnosed with moyamoya in 2001 I desperately wanted to
                    > speak to others who were experiencing the same thing and started this
                    > group. It was a great resource to me at that time and I met many very
                    > helpful positive parents through this group. I was terribly
                    > disappointed to come back several years later and see it bombarded with
                    > spam. So if any of the members who found this group useful are still
                    > around I would love for you to return. I would like to hear how your
                    > children are doing. I am working on cleaning up the spam and have
                    > locked down the membership to those who are approved so that should
                    > prevent future spam from being posted.
                    >
                    > Once again I would like to apologize to all of you and I hope that you
                    > return.
                    >

                    Hi everyone i do hope the spam goes as i dont like to use this site
                    anymore because of it. It really helped when Chloe was first
                    diagnosed, its sad that people are using this site for filth.
                    Jane






                    ---------------------------------
                    Looking for last minute shopping deals? Find them fast with Yahoo! Search.

                    [Non-text portions of this message have been removed]
                  • leilei543
                    My son had the same procedure performed by Dr. Scott. He is an amazing doctor. My son was 5 at the time of diagnoses and the local doctors continued to just
                    Message 9 of 16 , Jan 16, 2008
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                      My son had the same procedure performed by Dr. Scott. He is an
                      amazing doctor. My son was 5 at the time of diagnoses and the local
                      doctors continued to just tell me he was having migraines but I knew
                      it was more. Luckily for us we finally were put in touch with a
                      local doctor who went to a seminar where Dr. Scott spoke about Moya
                      Moya and referred us to him.

                      My son is 11 now and hasnt had a TIA in years. He still has the
                      occassional headache and takes two baby aspirin a day. Do any of
                      your children who are on aspirin complain of stomach aches? I wonder
                      sometimes if the aspirin is upsetting his stomach in some way. He is
                      a very active boy who plays numerous sports, we just have to be sure
                      to keep him hydrated. I notice that if he doesnt stay hydrated while
                      playing sports the next day he wakes up with a headache.


                      --- In parentingchildrenwithmoyamoya@yahoogroups.com, Laurie Park
                      <sparkln13@...> wrote:
                      >
                      > Thank you, Jane, for taking action!
                      >
                      > My daughter, Samantha, had bilateral revascularization performed
                      by Dr. Scott (yes, we too worship him and his staff!) in July, 2005.
                      She was 7 yrs old at the time. Her recovery has been wonderful. Her
                      migraine-like headaches are decreasing to an average of once every 1-
                      2 months. The only scare we had was last summer when she had a
                      fleeting TIA at home. Her aspirin was increased to 2x/day and she
                      seems to be fine since.
                      >
                      > I was wondering if anyone has been participating in the research
                      project that was discussed on DJ's site several months ago? I think
                      it was through a university/hospital in Arizona (?).
                      > I had considered it at the time but then got distracted with more
                      immediate events and never pursued it.
                      >
                      > Here's to a happy and HEALTHY New Year for everyone!!
                      > Laurie
                      >
                      > Jane <ginger090177@...> wrote:
                      > --- In parentingchildrenwithmoyamoya@yahoogroups.com,
                      leilei543
                      > <no_reply@> wrote:
                      > >
                      > > Hello Everyone... Im sorry to see this group being attacked by
                      spam.
                      > > When my son was diagnosed with moyamoya in 2001 I desperately
                      wanted to
                      > > speak to others who were experiencing the same thing and started
                      this
                      > > group. It was a great resource to me at that time and I met many
                      very
                      > > helpful positive parents through this group. I was terribly
                      > > disappointed to come back several years later and see it
                      bombarded with
                      > > spam. So if any of the members who found this group useful are
                      still
                      > > around I would love for you to return. I would like to hear how
                      your
                      > > children are doing. I am working on cleaning up the spam and have
                      > > locked down the membership to those who are approved so that
                      should
                      > > prevent future spam from being posted.
                      > >
                      > > Once again I would like to apologize to all of you and I hope
                      that you
                      > > return.
                      > >
                      >
                      > Hi everyone i do hope the spam goes as i dont like to use this site
                      > anymore because of it. It really helped when Chloe was first
                      > diagnosed, its sad that people are using this site for filth.
                      > Jane
                      >
                      >
                      >
                      >
                      >
                      >
                      > ---------------------------------
                      > Looking for last minute shopping deals? Find them fast with Yahoo!
                      Search.
                      >
                      > [Non-text portions of this message have been removed]
                      >
                    • djkrn2000
                      My son also had the same procedure done by Dr. Smith who studied under Dr. Scott and She is also wonderful. He had headaches at first and a few TIAs, but now
                      Message 10 of 16 , Jan 17, 2008
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                        My son also had the same procedure done by Dr. Smith who studied
                        under Dr. Scott and She is also wonderful. He had headaches at first
                        and a few TIAs, but now leads a a perfectly normal life. He turned 20
                        yesterday and had 2 surgeries(right and left) when he was 13!!!!!
                        What a celebration!! He still takes an aspirin a day and he does
                        occasionally have stomach trouble but takes the enteric coated
                        aspirin which helps. He also MUST in all cases stay Super Hydrated!!!
                        It helps in all situations he has found or he gets tired and does get
                        a headache at times. He forgets that he has this problem which is
                        good, but bad as well at his age!!! Good Luck!!
                        Djkmomo3@...



                        --- In parentingchildrenwithmoyamoya@yahoogroups.com, leilei543
                        <no_reply@...> wrote:
                        >
                        > My son had the same procedure performed by Dr. Scott. He is an
                        > amazing doctor. My son was 5 at the time of diagnoses and the
                        local
                        > doctors continued to just tell me he was having migraines but I
                        knew
                        > it was more. Luckily for us we finally were put in touch with a
                        > local doctor who went to a seminar where Dr. Scott spoke about Moya
                        > Moya and referred us to him.
                        >
                        > My son is 11 now and hasnt had a TIA in years. He still has the
                        > occassional headache and takes two baby aspirin a day. Do any of
                        > your children who are on aspirin complain of stomach aches? I
                        wonder
                        > sometimes if the aspirin is upsetting his stomach in some way. He
                        is
                        > a very active boy who plays numerous sports, we just have to be
                        sure
                        > to keep him hydrated. I notice that if he doesnt stay hydrated
                        while
                        > playing sports the next day he wakes up with a headache.
                        >
                        >
                        > --- In parentingchildrenwithmoyamoya@yahoogroups.com, Laurie Park
                        > <sparkln13@> wrote:
                        > >
                        > > Thank you, Jane, for taking action!
                        > >
                        > > My daughter, Samantha, had bilateral revascularization
                        performed
                        > by Dr. Scott (yes, we too worship him and his staff!) in July,
                        2005.
                        > She was 7 yrs old at the time. Her recovery has been wonderful. Her
                        > migraine-like headaches are decreasing to an average of once every
                        1-
                        > 2 months. The only scare we had was last summer when she had a
                        > fleeting TIA at home. Her aspirin was increased to 2x/day and she
                        > seems to be fine since.
                        > >
                        > > I was wondering if anyone has been participating in the
                        research
                        > project that was discussed on DJ's site several months ago? I think
                        > it was through a university/hospital in Arizona (?).
                        > > I had considered it at the time but then got distracted with
                        more
                        > immediate events and never pursued it.
                        > >
                        > > Here's to a happy and HEALTHY New Year for everyone!!
                        > > Laurie
                        > >
                        > > Jane <ginger090177@> wrote:
                        > > --- In parentingchildrenwithmoyamoya@yahoogroups.com,
                        > leilei543
                        > > <no_reply@> wrote:
                        > > >
                        > > > Hello Everyone... Im sorry to see this group being attacked by
                        > spam.
                        > > > When my son was diagnosed with moyamoya in 2001 I desperately
                        > wanted to
                        > > > speak to others who were experiencing the same thing and
                        started
                        > this
                        > > > group. It was a great resource to me at that time and I met
                        many
                        > very
                        > > > helpful positive parents through this group. I was terribly
                        > > > disappointed to come back several years later and see it
                        > bombarded with
                        > > > spam. So if any of the members who found this group useful are
                        > still
                        > > > around I would love for you to return. I would like to hear how
                        > your
                        > > > children are doing. I am working on cleaning up the spam and
                        have
                        > > > locked down the membership to those who are approved so that
                        > should
                        > > > prevent future spam from being posted.
                        > > >
                        > > > Once again I would like to apologize to all of you and I hope
                        > that you
                        > > > return.
                        > > >
                        > >
                        > > Hi everyone i do hope the spam goes as i dont like to use this
                        site
                        > > anymore because of it. It really helped when Chloe was first
                        > > diagnosed, its sad that people are using this site for filth.
                        > > Jane
                        > >
                        > >
                        > >
                        > >
                        > >
                        > >
                        > > ---------------------------------
                        > > Looking for last minute shopping deals? Find them fast with
                        Yahoo!
                        > Search.
                        > >
                        > > [Non-text portions of this message have been removed]
                        > >
                        >
                      • jane wood
                        Hi my daughter is 9 she takes 1/2 75mg asperin daily. She often is constipated and complains of tummy ache, i wonder if there is a connection ??? Jane
                        Message 11 of 16 , Jan 17, 2008
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                          Hi my daughter is 9 she takes 1/2 75mg asperin daily. She often is constipated and complains of tummy ache, i wonder if there is a connection ???
                          Jane

                          leilei543 <no_reply@yahoogroups.com> wrote: My son had the same procedure performed by Dr. Scott. He is an
                          amazing doctor. My son was 5 at the time of diagnoses and the local
                          doctors continued to just tell me he was having migraines but I knew
                          it was more. Luckily for us we finally were put in touch with a
                          local doctor who went to a seminar where Dr. Scott spoke about Moya
                          Moya and referred us to him.

                          My son is 11 now and hasnt had a TIA in years. He still has the
                          occassional headache and takes two baby aspirin a day. Do any of
                          your children who are on aspirin complain of stomach aches? I wonder
                          sometimes if the aspirin is upsetting his stomach in some way. He is
                          a very active boy who plays numerous sports, we just have to be sure
                          to keep him hydrated. I notice that if he doesnt stay hydrated while
                          playing sports the next day he wakes up with a headache.

                          --- In parentingchildrenwithmoyamoya@yahoogroups.com, Laurie Park
                          <sparkln13@...> wrote:
                          >
                          > Thank you, Jane, for taking action!
                          >
                          > My daughter, Samantha, had bilateral revascularization performed
                          by Dr. Scott (yes, we too worship him and his staff!) in July, 2005.
                          She was 7 yrs old at the time. Her recovery has been wonderful. Her
                          migraine-like headaches are decreasing to an average of once every 1-
                          2 months. The only scare we had was last summer when she had a
                          fleeting TIA at home. Her aspirin was increased to 2x/day and she
                          seems to be fine since.
                          >
                          > I was wondering if anyone has been participating in the research
                          project that was discussed on DJ's site several months ago? I think
                          it was through a university/hospital in Arizona (?).
                          > I had considered it at the time but then got distracted with more
                          immediate events and never pursued it.
                          >
                          > Here's to a happy and HEALTHY New Year for everyone!!
                          > Laurie
                          >
                          > Jane <ginger090177@...> wrote:
                          > --- In parentingchildrenwithmoyamoya@yahoogroups.com,
                          leilei543
                          > <no_reply@> wrote:
                          > >
                          > > Hello Everyone... Im sorry to see this group being attacked by
                          spam.
                          > > When my son was diagnosed with moyamoya in 2001 I desperately
                          wanted to
                          > > speak to others who were experiencing the same thing and started
                          this
                          > > group. It was a great resource to me at that time and I met many
                          very
                          > > helpful positive parents through this group. I was terribly
                          > > disappointed to come back several years later and see it
                          bombarded with
                          > > spam. So if any of the members who found this group useful are
                          still
                          > > around I would love for you to return. I would like to hear how
                          your
                          > > children are doing. I am working on cleaning up the spam and have
                          > > locked down the membership to those who are approved so that
                          should
                          > > prevent future spam from being posted.
                          > >
                          > > Once again I would like to apologize to all of you and I hope
                          that you
                          > > return.
                          > >
                          >
                          > Hi everyone i do hope the spam goes as i dont like to use this site
                          > anymore because of it. It really helped when Chloe was first
                          > diagnosed, its sad that people are using this site for filth.
                          > Jane
                          >
                          >
                          >
                          >
                          >
                          >
                          > ---------------------------------
                          > Looking for last minute shopping deals? Find them fast with Yahoo!
                          Search.
                          >
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                          >






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                        • jane wood
                          Hello Laurie I havnt spoken to anyone in ages. I guess i just got fed up of all the spam and didnt trust the emails anymore, i hope it gets sorted as
                          Message 12 of 16 , Jan 17, 2008
                          • 0 Attachment
                            Hello Laurie
                            I havnt spoken to anyone in ages. I guess i just got fed up of all the spam and didnt trust the emails anymore, i hope it gets sorted as families need this its a great way to stay in touch get advice ect
                            Samantha will be 9 now then same as Chloe. Hows she doing at school ???
                            Glad her headaches are easing. Chloe has never complained of headaches, but crys a lot which i put down to frustration as she cant talk, she also hits her head a lot again i put this down to frustration, the Drs never explained to me that she might get headaches, in fact they didnt explain much at all. Chloe is having an operation on her weak hand next Wednesday it was booked for before Christmas but had to be canceled because she had a bad cough on the morning of the operation. They are hoping the operation will allow her to use her hand more.
                            Has anyone else come across this surgery ???
                            Take care all
                            Jane x

                            Laurie Park <sparkln13@...> wrote: Thank you, Jane, for taking action!

                            My daughter, Samantha, had bilateral revascularization performed by Dr. Scott (yes, we too worship him and his staff!) in July, 2005. She was 7 yrs old at the time. Her recovery has been wonderful. Her migraine-like headaches are decreasing to an average of once every 1-2 months. The only scare we had was last summer when she had a fleeting TIA at home. Her aspirin was increased to 2x/day and she seems to be fine since.

                            I was wondering if anyone has been participating in the research project that was discussed on DJ's site several months ago? I think it was through a university/hospital in Arizona (?).
                            I had considered it at the time but then got distracted with more immediate events and never pursued it.

                            Here's to a happy and HEALTHY New Year for everyone!!
                            Laurie

                            Jane <ginger090177@...> wrote:
                            --- In parentingchildrenwithmoyamoya@yahoogroups.com, leilei543
                            <no_reply@...> wrote:
                            >
                            > Hello Everyone... Im sorry to see this group being attacked by spam.
                            > When my son was diagnosed with moyamoya in 2001 I desperately wanted to
                            > speak to others who were experiencing the same thing and started this
                            > group. It was a great resource to me at that time and I met many very
                            > helpful positive parents through this group. I was terribly
                            > disappointed to come back several years later and see it bombarded with
                            > spam. So if any of the members who found this group useful are still
                            > around I would love for you to return. I would like to hear how your
                            > children are doing. I am working on cleaning up the spam and have
                            > locked down the membership to those who are approved so that should
                            > prevent future spam from being posted.
                            >
                            > Once again I would like to apologize to all of you and I hope that you
                            > return.
                            >

                            Hi everyone i do hope the spam goes as i dont like to use this site
                            anymore because of it. It really helped when Chloe was first
                            diagnosed, its sad that people are using this site for filth.
                            Jane

                            ---------------------------------
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                          • Laurie Park
                            Hi Jane, Samantha was lucky and did not suffer a stroke prior to her being diagnosed with Moyamoya. She seems to have no residual affects except for the
                            Message 13 of 16 , Jan 17, 2008
                            • 0 Attachment
                              Hi Jane,
                              Samantha was lucky and did not suffer a stroke prior to her being diagnosed with Moyamoya. She seems to have no residual affects except for the migraines. She's in fourth grade and is in the gifted program at school.

                              I am a Speech-Language Pathologist who has worked with pediatrics as well as adult stroke patients. I credit my profession with helping me to recognize the early signs of stroke so that she could be diagnosed early. The ER doctor I took her to after she suffered her 3rd TIA in 10 days, including slurred speech during the last episode, was going to send her home without any tests at all. I became a quiet rock in that ER and would not move until he got someone to help us. Luckily the pediatrician on call was wonderful and took Samantha's case very seriously. We were stationed in Korea at the time where Moyamoya is more common than in the States.

                              Is Chloe seeing a Speech Language Pathologist to help her with her communication? Perhaps when her hand improves it will be easier for her to use communication devices and she won't be so frustrated. I haven't had experience with hand surgery but I have a couple of friends who are Occupational Therapists and specialize in hand therapy. If you have any questions that you can't get answered, let me know and I will see if my friends can help point you in the right direction.

                              I'll be thinking of you and Chloe next wednesday and praying for excellent outcomes!!

                              Keep us posted.
                              Laurie :)

                              jane wood <ginger090177@...> wrote:
                              Hello Laurie
                              I havnt spoken to anyone in ages. I guess i just got fed up of all the spam and didnt trust the emails anymore, i hope it gets sorted as families need this its a great way to stay in touch get advice ect
                              Samantha will be 9 now then same as Chloe. Hows she doing at school ???
                              Glad her headaches are easing. Chloe has never complained of headaches, but crys a lot which i put down to frustration as she cant talk, she also hits her head a lot again i put this down to frustration, the Drs never explained to me that she might get headaches, in fact they didnt explain much at all. Chloe is having an operation on her weak hand next Wednesday it was booked for before Christmas but had to be canceled because she had a bad cough on the morning of the operation. They are hoping the operation will allow her to use her hand more.
                              Has anyone else come across this surgery ???
                              Take care all
                              Jane x

                              Laurie Park <sparkln13@...> wrote: Thank you, Jane, for taking action!

                              My daughter, Samantha, had bilateral revascularization performed by Dr. Scott (yes, we too worship him and his staff!) in July, 2005. She was 7 yrs old at the time. Her recovery has been wonderful. Her migraine-like headaches are decreasing to an average of once every 1-2 months. The only scare we had was last summer when she had a fleeting TIA at home. Her aspirin was increased to 2x/day and she seems to be fine since.

                              I was wondering if anyone has been participating in the research project that was discussed on DJ's site several months ago? I think it was through a university/hospital in Arizona (?).
                              I had considered it at the time but then got distracted with more immediate events and never pursued it.

                              Here's to a happy and HEALTHY New Year for everyone!!
                              Laurie

                              Jane <ginger090177@...> wrote:
                              --- In parentingchildrenwithmoyamoya@yahoogroups.com, leilei543
                              <no_reply@...> wrote:
                              >
                              > Hello Everyone... Im sorry to see this group being attacked by spam.
                              > When my son was diagnosed with moyamoya in 2001 I desperately wanted to
                              > speak to others who were experiencing the same thing and started this
                              > group. It was a great resource to me at that time and I met many very
                              > helpful positive parents through this group. I was terribly
                              > disappointed to come back several years later and see it bombarded with
                              > spam. So if any of the members who found this group useful are still
                              > around I would love for you to return. I would like to hear how your
                              > children are doing. I am working on cleaning up the spam and have
                              > locked down the membership to those who are approved so that should
                              > prevent future spam from being posted.
                              >
                              > Once again I would like to apologize to all of you and I hope that you
                              > return.
                              >

                              Hi everyone i do hope the spam goes as i dont like to use this site
                              anymore because of it. It really helped when Chloe was first
                              diagnosed, its sad that people are using this site for filth.
                              Jane

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





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






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                              [Non-text portions of this message have been removed]
                            • jane wood
                              Hi Laurie Nice to hear from you Dear. Chloe isnt having speech therapy at the moment but i will be pushing for it once we get her hand sorted. We go in
                              Message 14 of 16 , Jan 21, 2008
                              • 0 Attachment
                                Hi Laurie
                                Nice to hear from you Dear.
                                Chloe isnt having speech therapy at the moment but i will be pushing for it once we get her hand sorted. We go in tomorrow surgery is planned for Wednesday. I am feeling very stressed as you can imagine.
                                Chloe has a Dynavox speaking machine, but the last time we went to see our specialist he mentioned he thought her sounds had got better, she uses the machine very well and also does makaton (sign language) so she manages quiet well.
                                Well there doesnt seem to be any spam on here i am really pleased its good to get talking with everyone again.
                                Jane x

                                Laurie Park <sparkln13@...> wrote: Hi Jane,
                                Samantha was lucky and did not suffer a stroke prior to her being diagnosed with Moyamoya. She seems to have no residual affects except for the migraines. She's in fourth grade and is in the gifted program at school.

                                I am a Speech-Language Pathologist who has worked with pediatrics as well as adult stroke patients. I credit my profession with helping me to recognize the early signs of stroke so that she could be diagnosed early. The ER doctor I took her to after she suffered her 3rd TIA in 10 days, including slurred speech during the last episode, was going to send her home without any tests at all. I became a quiet rock in that ER and would not move until he got someone to help us. Luckily the pediatrician on call was wonderful and took Samantha's case very seriously. We were stationed in Korea at the time where Moyamoya is more common than in the States.

                                Is Chloe seeing a Speech Language Pathologist to help her with her communication? Perhaps when her hand improves it will be easier for her to use communication devices and she won't be so frustrated. I haven't had experience with hand surgery but I have a couple of friends who are Occupational Therapists and specialize in hand therapy. If you have any questions that you can't get answered, let me know and I will see if my friends can help point you in the right direction.

                                I'll be thinking of you and Chloe next wednesday and praying for excellent outcomes!!

                                Keep us posted.
                                Laurie :)

                                jane wood <ginger090177@...> wrote:
                                Hello Laurie
                                I havnt spoken to anyone in ages. I guess i just got fed up of all the spam and didnt trust the emails anymore, i hope it gets sorted as families need this its a great way to stay in touch get advice ect
                                Samantha will be 9 now then same as Chloe. Hows she doing at school ???
                                Glad her headaches are easing. Chloe has never complained of headaches, but crys a lot which i put down to frustration as she cant talk, she also hits her head a lot again i put this down to frustration, the Drs never explained to me that she might get headaches, in fact they didnt explain much at all. Chloe is having an operation on her weak hand next Wednesday it was booked for before Christmas but had to be canceled because she had a bad cough on the morning of the operation. They are hoping the operation will allow her to use her hand more.
                                Has anyone else come across this surgery ???
                                Take care all
                                Jane x

                                Laurie Park <sparkln13@...> wrote: Thank you, Jane, for taking action!

                                My daughter, Samantha, had bilateral revascularization performed by Dr. Scott (yes, we too worship him and his staff!) in July, 2005. She was 7 yrs old at the time. Her recovery has been wonderful. Her migraine-like headaches are decreasing to an average of once every 1-2 months. The only scare we had was last summer when she had a fleeting TIA at home. Her aspirin was increased to 2x/day and she seems to be fine since.

                                I was wondering if anyone has been participating in the research project that was discussed on DJ's site several months ago? I think it was through a university/hospital in Arizona (?).
                                I had considered it at the time but then got distracted with more immediate events and never pursued it.

                                Here's to a happy and HEALTHY New Year for everyone!!
                                Laurie

                                Jane <ginger090177@...> wrote:
                                --- In parentingchildrenwithmoyamoya@yahoogroups.com, leilei543
                                <no_reply@...> wrote:
                                >
                                > Hello Everyone... Im sorry to see this group being attacked by spam.
                                > When my son was diagnosed with moyamoya in 2001 I desperately wanted to
                                > speak to others who were experiencing the same thing and started this
                                > group. It was a great resource to me at that time and I met many very
                                > helpful positive parents through this group. I was terribly
                                > disappointed to come back several years later and see it bombarded with
                                > spam. So if any of the members who found this group useful are still
                                > around I would love for you to return. I would like to hear how your
                                > children are doing. I am working on cleaning up the spam and have
                                > locked down the membership to those who are approved so that should
                                > prevent future spam from being posted.
                                >
                                > Once again I would like to apologize to all of you and I hope that you
                                > return.
                                >

                                Hi everyone i do hope the spam goes as i dont like to use this site
                                anymore because of it. It really helped when Chloe was first
                                diagnosed, its sad that people are using this site for filth.
                                Jane

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

                                ---------------------------------
                                Sent from Yahoo! - a smarter inbox.

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

                                ---------------------------------
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                                [Non-text portions of this message have been removed]
                              • jane wood
                                Hi all Just wanted to let you know Chloe had her operation done on her wrist/thumb on Wednesday and it went ok. We are home now. We wont know if it is going
                                Message 15 of 16 , Jan 25, 2008
                                • 0 Attachment
                                  Hi all
                                  Just wanted to let you know Chloe had her operation done on her wrist/thumb on Wednesday and it went ok. We are home now. We wont know if it is going to work for a while though. We have lots of physio to do, its been hard today as Chloe is in a bit of pain with it, i hope it doesnt last too long.
                                  Hope your all okay
                                  Jane and family xxx


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                                • Mohamed
                                  Hello everyone, I wrote in in 2006/07 because my daughter had just been diagonised with moyamoya and this site was wonderful in supporting and giving my family
                                  Message 16 of 16 , Sep 30, 2008
                                  • 0 Attachment
                                    Hello everyone,
                                    I wrote in in 2006/07 because my daughter had just been diagonised with moyamoya and this site was wonderful in supporting and giving my family resources on the disease.As you said it was just horrid to see people take advantage of the website.
                                    Since I last wrote in, I am pleased to say that my daughter Alia has undergone surgery twice with Dr Scott(Children's hospital Boston) and she is in recovery for the right frontal lobe as we speak.She is doing well and I can't praise the doctors and nursing staff enough; they are so good at what they do, you just feel taken care of.
                                    ----- Original Message ----
                                    From: Kevin Cave <kevin_c86@...>
                                    To: parentingchildrenwithmoyamoya@yahoogroups.com
                                    Sent: Thursday, January 10, 2008 7:40:39 PM
                                    Subject: RE: [Parenting Children with Moyamoya] I am cleaning up the spam

                                    To us also, please let us know if we can help.

                                    Nancy McStravick <nancymcstravick@ hotmail.com> wrote:
                                    That's fantastic news.
                                    It's so upsetting to see all these horrible messages coming through.
                                    Thank you

                                    To: parentingchildrenwi thmoyamoya@ yahoogroups. comFrom: no_reply@yahoogroup s.comDate: Thu, 10 Jan 2008 19:46:47 +0000Subject: [Parenting Children with Moyamoya] I am cleaning up the spam

                                    Hello Everyone... Im sorry to see this group being attacked by spam. When my son was diagnosed with moyamoya in 2001 I desperately wanted to speak to others who were experiencing the same thing and started this group. It was a great resource to me at that time and I met many very helpful positive parents through this group. I was terribly disappointed to come back several years later and see it bombarded with spam. So if any of the members who found this group useful are still around I would love for you to return. I would like to hear how your children are doing. I am working on cleaning up the spam and have locked down the membership to those who are approved so that should prevent future spam from being posted.Once again I would like to apologize to all of you and I hope that you return.

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                                    Best Regards,

                                    Kevin M. Cave

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