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

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  • Nancy McStravick
    Hi Michelle, Emily doesn t have NF but we do keep an eye out Nance
    Message 1 of 12 , Jul 16, 2005
      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 2 of 12 , Jul 17, 2005
        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 3 of 12 , Jul 18, 2005
          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.

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        • Nancy McStravick
          Kevin, Are you saying that 10% of all Japanese children have Moyamoya? Nancy
          Message 4 of 12 , Jul 18, 2005
            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 5 of 12 , Jul 19, 2005
              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]
              >




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            • Nancy McStravick
              Sorry - I should have realised that s what you meant - thanks
              Message 6 of 12 , Jul 19, 2005
                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
                >
                >---------------------------------
                >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.
                >
                >
                >---------------------------------
                >
                >
                >
                >
                >---------------------------------
                > Start your day with Yahoo! - make it your home page
                >
                >[Non-text portions of this message have been removed]
                >
              • mandy harmon
                What is nf?
                Message 7 of 12 , Jul 24, 2005
                  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
                  >Parenting child Cellular phone family plan Family vacations Parenting
                  >magazine Single parenting
                  >
                  >---------------------------------
                  >YAHOO! GROUPS LINKS
                  >
                  >
                  > 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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                  >
                  >
                  >
                  >
                  >---------------------------------
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                  >
                  >[Non-text portions of this message have been removed]
                  >
                • 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 8 of 12 , Jul 24, 2005
                    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 9 of 12 , Aug 15, 2005
                      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 10 of 12 , Aug 15, 2005
                        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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