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RE: [Parenting Children with Moyamoya] NF1 ???

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  • mandy harmon
    What is NF?
    Message 1 of 12 , Jul 16, 2005
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      What is NF?

      >From: "pmteet@..." <pmteet@...>
      >Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
      >To: <parentingchildrenwithmoyamoya@yahoogroups.com>
      >Subject: [Parenting Children with Moyamoya] NF1 ???
      >Date: Tue, 21 Jun 2005 07:32:22 -0500 (Central Daylight Time)
      >
      >Just curious how many people here have kids or they themself have NF? I do
      >as does 2 of my 3 kids. Cheyenne has MM also and all her carotids are all
      >but closed. She had surgery here in St. Louis back in '99 and has been
      >doing fine. She does have kidney problems also. The docs are not sure it
      >is the MM or the NF that caused the Renal Artery stenosis.
      >
      >Just curious.
      >
      >Thanks
      >michelle
      >
      >[Non-text portions of this message have been removed]
      >
    • Nancy McStravick
      Hi Michelle, Emily doesn t have NF but we do keep an eye out Nance
      Message 2 of 12 , Jul 16, 2005
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        Hi Michelle,
        Emily doesn't have NF but we do keep an eye out
        Nance

        >From: "mandy harmon" <HarmonMandy@...>
        >Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
        >To: parentingchildrenwithmoyamoya@yahoogroups.com
        >Subject: RE: [Parenting Children with Moyamoya] NF1 ???
        >Date: Sat, 16 Jul 2005 19:59:31 -0400
        >
        >What is NF?
        >
        > >From: "pmteet@..." <pmteet@...>
        > >Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
        > >To: <parentingchildrenwithmoyamoya@yahoogroups.com>
        > >Subject: [Parenting Children with Moyamoya] NF1 ???
        > >Date: Tue, 21 Jun 2005 07:32:22 -0500 (Central Daylight Time)
        > >
        > >Just curious how many people here have kids or they themself have NF? I
        >do
        > >as does 2 of my 3 kids. Cheyenne has MM also and all her carotids are
        >all
        > >but closed. She had surgery here in St. Louis back in '99 and has been
        > >doing fine. She does have kidney problems also. The docs are not sure
        >it
        > >is the MM or the NF that caused the Renal Artery stenosis.
        > >
        > >Just curious.
        > >
        > >Thanks
        > >michelle
        > >
        > >[Non-text portions of this message have been removed]
        > >
        >
        >
      • jane wood
        Hello Michelle What is NF ??? Jane mandy harmon wrote: What is NF? ... YAHOO! GROUPS LINKS Visit your group
        Message 3 of 12 , Jul 17, 2005
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          Hello Michelle
          What is NF ???
          Jane
          mandy harmon <HarmonMandy@...> wrote:
          What is NF?

          >From: "pmteet@..." <pmteet@...>
          >Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
          >To: <parentingchildrenwithmoyamoya@yahoogroups.com>
          >Subject: [Parenting Children with Moyamoya] NF1 ???
          >Date: Tue, 21 Jun 2005 07:32:22 -0500 (Central Daylight Time)
          >
          >Just curious how many people here have kids or they themself have NF? I do
          >as does 2 of my 3 kids. Cheyenne has MM also and all her carotids are all
          >but closed. She had surgery here in St. Louis back in '99 and has been
          >doing fine. She does have kidney problems also. The docs are not sure it
          >is the MM or the NF that caused the Renal Artery stenosis.
          >
          >Just curious.
          >
          >Thanks
          >michelle
          >
          >[Non-text portions of this message have been removed]
          >




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        • Kevin Cave
          NF1 is the most common cause of Moyamoya. The percentage of Japanese children with Moyamoya is about 10%, the amount with children with NF 1 is 13%. mandy
          Message 4 of 12 , Jul 18, 2005
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            NF1 is the most common cause of Moyamoya. The percentage of Japanese children with Moyamoya is about 10%, the amount with children with NF 1 is 13%.

            mandy harmon <HarmonMandy@...> wrote: What is NF?

            >From: "pmteet@..." <pmteet@...>
            >Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
            >To: <parentingchildrenwithmoyamoya@yahoogroups.com>
            >Subject: [Parenting Children with Moyamoya] NF1 ???
            >Date: Tue, 21 Jun 2005 07:32:22 -0500 (Central Daylight Time)
            >
            >Just curious how many people here have kids or they themself have NF? I do
            >as does 2 of my 3 kids. Cheyenne has MM also and all her carotids are all
            >but closed. She had surgery here in St. Louis back in '99 and has been
            >doing fine. She does have kidney problems also. The docs are not sure it
            >is the MM or the NF that caused the Renal Artery stenosis.
            >
            >Just curious.
            >
            >Thanks
            >michelle
            >
            >[Non-text portions of this message have been removed]
            >




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            Visit your group "parentingchildrenwithmoyamoya" on the web.

            To unsubscribe from this group, send an email to:
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          • Nancy McStravick
            Kevin, Are you saying that 10% of all Japanese children have Moyamoya? Nancy
            Message 5 of 12 , Jul 18, 2005
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              Kevin,
              Are you saying that 10% of all Japanese children have Moyamoya?
              Nancy

              >From: Kevin Cave <kevin_c86@...>
              >Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
              >To: parentingchildrenwithmoyamoya@yahoogroups.com
              >Subject: RE: [Parenting Children with Moyamoya] NF1 ???
              >Date: Mon, 18 Jul 2005 17:16:47 -0700 (PDT)
              >
              >NF1 is the most common cause of Moyamoya. The percentage of Japanese
              >children with Moyamoya is about 10%, the amount with children with NF 1 is
              >13%.
              >
              >mandy harmon <HarmonMandy@...> wrote: What is NF?
              >
              > >From: "pmteet@..." <pmteet@...>
              > >Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
              > >To: <parentingchildrenwithmoyamoya@yahoogroups.com>
              > >Subject: [Parenting Children with Moyamoya] NF1 ???
              > >Date: Tue, 21 Jun 2005 07:32:22 -0500 (Central Daylight Time)
              > >
              > >Just curious how many people here have kids or they themself have NF? I
              >do
              > >as does 2 of my 3 kids. Cheyenne has MM also and all her carotids are
              >all
              > >but closed. She had surgery here in St. Louis back in '99 and has been
              > >doing fine. She does have kidney problems also. The docs are not sure
              >it
              > >is the MM or the NF that caused the Renal Artery stenosis.
              > >
              > >Just curious.
              > >
              > >Thanks
              > >michelle
              > >
              > >[Non-text portions of this message have been removed]
              > >
              >
              >
              >
              >
              >---------------------------------
              >YAHOO! GROUPS LINKS
              >
              >
              > Visit your group "parentingchildrenwithmoyamoya" on the web.
              >
              > 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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              >[Non-text portions of this message have been removed]
              >
            • Kevin Cave
              Sorry my wording was not clear, 10% of children with Moyamoya are Japanese. Here is a link to Boston Childrens may shed some light.
              Message 6 of 12 , Jul 19, 2005
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                Sorry my wording was not clear, 10% of children with Moyamoya are Japanese. Here is a link to Boston Childrens may shed some light. http://www.boston-neurosurg.org/publications/faq/moyamoyaRMS.shtml

                Kevin

                Nancy McStravick <nancymcstravick@...> wrote:
                Kevin,
                Are you saying that 10% of all Japanese children have Moyamoya?
                Nancy

                >From: Kevin Cave <kevin_c86@...>
                >Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
                >To: parentingchildrenwithmoyamoya@yahoogroups.com
                >Subject: RE: [Parenting Children with Moyamoya] NF1 ???
                >Date: Mon, 18 Jul 2005 17:16:47 -0700 (PDT)
                >
                >NF1 is the most common cause of Moyamoya. The percentage of Japanese
                >children with Moyamoya is about 10%, the amount with children with NF 1 is
                >13%.
                >
                >mandy harmon <HarmonMandy@...> wrote: What is NF?
                >
                > >From: "pmteet@..." <pmteet@...>
                > >Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
                > >To: <parentingchildrenwithmoyamoya@yahoogroups.com>
                > >Subject: [Parenting Children with Moyamoya] NF1 ???
                > >Date: Tue, 21 Jun 2005 07:32:22 -0500 (Central Daylight Time)
                > >
                > >Just curious how many people here have kids or they themself have NF? I
                >do
                > >as does 2 of my 3 kids. Cheyenne has MM also and all her carotids are
                >all
                > >but closed. She had surgery here in St. Louis back in '99 and has been
                > >doing fine. She does have kidney problems also. The docs are not sure
                >it
                > >is the MM or the NF that caused the Renal Artery stenosis.
                > >
                > >Just curious.
                > >
                > >Thanks
                > >michelle
                > >
                > >[Non-text portions of this message have been removed]
                > >
                >
                >
                >
                >
                >---------------------------------
                >YAHOO! GROUPS LINKS
                >
                >
                > Visit your group "parentingchildrenwithmoyamoya" on the web.
                >
                > 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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                >
                >[Non-text portions of this message have been removed]
                >




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              • Nancy McStravick
                Sorry - I should have realised that s what you meant - thanks
                Message 7 of 12 , Jul 19, 2005
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                  Sorry - I should have realised that's what you meant - thanks

                  >From: Kevin Cave <kevin_c86@...>
                  >Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
                  >To: parentingchildrenwithmoyamoya@yahoogroups.com
                  >Subject: RE: [Parenting Children with Moyamoya] NF1 ???
                  >Date: Tue, 19 Jul 2005 15:28:26 -0700 (PDT)
                  >
                  >Sorry my wording was not clear, 10% of children with Moyamoya are Japanese.
                  > Here is a link to Boston Childrens may shed some light.
                  >http://www.boston-neurosurg.org/publications/faq/moyamoyaRMS.shtml
                  >
                  >Kevin
                  >
                  >Nancy McStravick <nancymcstravick@...> wrote:
                  >Kevin,
                  >Are you saying that 10% of all Japanese children have Moyamoya?
                  >Nancy
                  >
                  > >From: Kevin Cave <kevin_c86@...>
                  > >Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
                  > >To: parentingchildrenwithmoyamoya@yahoogroups.com
                  > >Subject: RE: [Parenting Children with Moyamoya] NF1 ???
                  > >Date: Mon, 18 Jul 2005 17:16:47 -0700 (PDT)
                  > >
                  > >NF1 is the most common cause of Moyamoya. The percentage of Japanese
                  > >children with Moyamoya is about 10%, the amount with children with NF 1
                  >is
                  > >13%.
                  > >
                  > >mandy harmon <HarmonMandy@...> wrote: What is NF?
                  > >
                  > > >From: "pmteet@..." <pmteet@...>
                  > > >Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
                  > > >To: <parentingchildrenwithmoyamoya@yahoogroups.com>
                  > > >Subject: [Parenting Children with Moyamoya] NF1 ???
                  > > >Date: Tue, 21 Jun 2005 07:32:22 -0500 (Central Daylight Time)
                  > > >
                  > > >Just curious how many people here have kids or they themself have NF?
                  >I
                  > >do
                  > > >as does 2 of my 3 kids. Cheyenne has MM also and all her carotids are
                  > >all
                  > > >but closed. She had surgery here in St. Louis back in '99 and has been
                  > > >doing fine. She does have kidney problems also. The docs are not sure
                  > >it
                  > > >is the MM or the NF that caused the Renal Artery stenosis.
                  > > >
                  > > >Just curious.
                  > > >
                  > > >Thanks
                  > > >michelle
                  > > >
                  > > >[Non-text portions of this message have been removed]
                  > > >
                  > >
                  > >
                  > >
                  > >
                  > >---------------------------------
                  > >YAHOO! GROUPS LINKS
                  > >
                  > >
                  > > Visit your group "parentingchildrenwithmoyamoya" on the web.
                  > >
                  > > 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]
                  > >
                  >
                  >
                  >
                  >
                  >SPONSORED LINKS
                  >Parenting child Cellular phone family plan Family vacations Parenting
                  >magazine Single parenting
                  >
                  >---------------------------------
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                  >
                  >
                  > Visit your group "parentingchildrenwithmoyamoya" on the web.
                  >
                  > 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.
                  >
                  >
                  >---------------------------------
                  >
                  >
                  >
                  >
                  >---------------------------------
                  > Start your day with Yahoo! - make it your home page
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                  >[Non-text portions of this message have been removed]
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                • mandy harmon
                  What is nf?
                  Message 8 of 12 , Jul 24, 2005
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                    What is nf?

                    >From: Kevin Cave <kevin_c86@...>
                    >Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
                    >To: parentingchildrenwithmoyamoya@yahoogroups.com
                    >Subject: RE: [Parenting Children with Moyamoya] NF1 ???
                    >Date: Tue, 19 Jul 2005 15:28:26 -0700 (PDT)
                    >
                    >Sorry my wording was not clear, 10% of children with Moyamoya are Japanese.
                    > Here is a link to Boston Childrens may shed some light.
                    >http://www.boston-neurosurg.org/publications/faq/moyamoyaRMS.shtml
                    >
                    >Kevin
                    >
                    >Nancy McStravick <nancymcstravick@...> wrote:
                    >Kevin,
                    >Are you saying that 10% of all Japanese children have Moyamoya?
                    >Nancy
                    >
                    > >From: Kevin Cave <kevin_c86@...>
                    > >Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
                    > >To: parentingchildrenwithmoyamoya@yahoogroups.com
                    > >Subject: RE: [Parenting Children with Moyamoya] NF1 ???
                    > >Date: Mon, 18 Jul 2005 17:16:47 -0700 (PDT)
                    > >
                    > >NF1 is the most common cause of Moyamoya. The percentage of Japanese
                    > >children with Moyamoya is about 10%, the amount with children with NF 1
                    >is
                    > >13%.
                    > >
                    > >mandy harmon <HarmonMandy@...> wrote: What is NF?
                    > >
                    > > >From: "pmteet@..." <pmteet@...>
                    > > >Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
                    > > >To: <parentingchildrenwithmoyamoya@yahoogroups.com>
                    > > >Subject: [Parenting Children with Moyamoya] NF1 ???
                    > > >Date: Tue, 21 Jun 2005 07:32:22 -0500 (Central Daylight Time)
                    > > >
                    > > >Just curious how many people here have kids or they themself have NF?
                    >I
                    > >do
                    > > >as does 2 of my 3 kids. Cheyenne has MM also and all her carotids are
                    > >all
                    > > >but closed. She had surgery here in St. Louis back in '99 and has been
                    > > >doing fine. She does have kidney problems also. The docs are not sure
                    > >it
                    > > >is the MM or the NF that caused the Renal Artery stenosis.
                    > > >
                    > > >Just curious.
                    > > >
                    > > >Thanks
                    > > >michelle
                    > > >
                    > > >[Non-text portions of this message have been removed]
                    > > >
                    > >
                    > >
                    > >
                    > >
                    > >---------------------------------
                    > >YAHOO! GROUPS LINKS
                    > >
                    > >
                    > > Visit your group "parentingchildrenwithmoyamoya" on the web.
                    > >
                    > > 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]
                    > >
                    >
                    >
                    >
                    >
                    >SPONSORED LINKS
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                    >magazine Single parenting
                    >
                    >---------------------------------
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                    >
                    >
                    > Visit your group "parentingchildrenwithmoyamoya" on the web.
                    >
                    > To unsubscribe from this group, send an email to:
                    > parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com
                    >
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                    >
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                  • pmteet@sbcglobal.net
                    NF is a genetic disorder. It is charicterized by Cafe -au-late (tan) patches of skin and benign tumors. It is a nuerological disorder, however it can also be
                    Message 9 of 12 , Jul 24, 2005
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                      NF is a genetic disorder. It is charicterized by Cafe'-au-late (tan)
                      patches of skin and benign tumors. It is a nuerological disorder, however
                      it can also be a vascular disorder.
                      There are many serious.

                      http://www.understandingnf1.org/


                      Michelle



                      [Non-text portions of this message have been removed]
                    • mandy harmon
                      very interesting- My daughter has many of these coffee colored spots- I will have to count them- some are very large.
                      Message 10 of 12 , Aug 15, 2005
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                        very interesting- My daughter has many of these coffee colored spots- I will
                        have to count them- some are very large.

                        >From: "pmteet@..." <pmteet@...>
                        >Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
                        >To: <parentingchildrenwithmoyamoya@yahoogroups.com>
                        >Subject: RE: [Parenting Children with Moyamoya] NF1 ???
                        >Date: Sun, 24 Jul 2005 20:53:18 -0500 (Central Daylight Time)
                        >
                        >
                        >
                        >
                        > NF is a genetic disorder. It is charicterized by Cafe'-au-late (tan)
                        >patches of skin and benign tumors. It is a nuerological disorder, however
                        >it can also be a vascular disorder.
                        >There are many serious.
                        >
                        >http://www.understandingnf1.org/
                        >
                        >
                        >Michelle
                        >
                        >
                        >
                        >[Non-text portions of this message have been removed]
                        >
                      • Michelle
                        Does she have freckles in her armpits and grion? This are also a sure sign of NF but they do not always show up until later childhood. We also get little
                        Message 11 of 12 , Aug 15, 2005
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                          Does she have "freckles" in her armpits and grion? This are also a sure sign of NF but they do not always show up until later childhood. We also get little skin tumors. They are almost alway non cancerous. Only a VERY VERY small number turn to cancer.

                          I have a LARGE CAL (coffee colored) spot on my back and under it is a very large tumor. It is worth getting checked out. MOST people with NF go a life time without problems however is should not be ignored, as some doctors believe. MANY of the problems if detected soon enough can be treated.

                          Feel free to e-mail me any time

                          Michelle.

                          mandy harmon <HarmonMandy@...> wrote:

                          very interesting- My daughter has many of these coffee colored spots- I will
                          have to count them- some are very large.

                          >From: "pmteet@..." <pmteet@...>
                          >Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
                          >To: <parentingchildrenwithmoyamoya@yahoogroups.com>
                          >Subject: RE: [Parenting Children with Moyamoya] NF1 ???
                          >Date: Sun, 24 Jul 2005 20:53:18 -0500 (Central Daylight Time)
                          >
                          >
                          >
                          >
                          > NF is a genetic disorder. It is charicterized by Cafe'-au-late (tan)
                          >patches of skin and benign tumors. It is a nuerological disorder, however
                          >it can also be a vascular disorder.
                          >There are many serious.
                          >
                          >http://www.understandingnf1.org/
                          >
                          >
                          >Michelle
                          >
                          >
                          >
                          >[Non-text portions of this message have been removed]
                          >




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