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Re: [Families of Angelman Syndrome] Re: No mutation for Angelman..know what?

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  • Wells Nicole
    Just to let you know, our son Brandon had 2 negative tests before the positive test in December 2005.  From everything that I have read and the people that I
    Message 1 of 6 , Oct 10, 2008
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      Just to let you know, our son Brandon had 2 negative tests before the positive test in December 2005.  From everything that I have read and the people that I have talked to it is possible to get a false negative but you will NEVER get a false positive.  Does that make sense?  I know a lot of families that have the first one or two tests come back negative but then get tested again a year or more later and it comes back positive.  One reason for this (at least this is what I have heard), it that the test is so complex that the mutation is sometimes missed.  I know that does not help you find a doctor but I just wanted to share this with you.  When Brandon received his first 2 tests negative (both were done within a month of each other), we knew they were wrong because he showed all the signs and all the doctors were convinced.  The one thing I can tell you is stay strong and keep fighting for you daughter.
      Nicole mom to 3 including 1 angel age 7 Brandon

      --- On Fri, 10/10/08, wendy cheetham <wendycheetham@...> wrote:

      From: wendy cheetham <wendycheetham@...>
      Subject: [Families of Angelman Syndrome] Re: No mutation for Angelman..know what?
      To: familiesofangelmansyndrome@yahoogroups.com
      Date: Friday, October 10, 2008, 11:29 AM






      --- In familiesofangelmans yndrome@yahoogro ups.com, "Jeanne"
      <jeanneis@.. .> wrote:
      >Hi Jeanne, my nameis Wendy my son dose have angelmans andwe went
      tother web site and got the list of dr. thereare only a handfull but we
      saw they were around big citys all over the U.S. Check it out you just
      might find one around you good luck and God bless.
      > We think our daughter has Angelmans but the test just came back, no
      > mutation. She seems to be more like Angelmans than Rett, like we
      > thought she had all these years. She's 13. We'd like to go see a
      > specialist in Angelmans. We live in the Dallas area, but are willing
      > to travel anywhere. Can someone give us a recommendation of who to
      go
      > see?
      >
      > Thank you,
      > Jeanne Adams
      > Ashley 13
      >


















      [Non-text portions of this message have been removed]
    • Jeanne Adams
      Hi Nicole, Thank you for your note. I really appreciated the time you took to write me. I got in touch with a researcher at Vanderbilt who is going to let me
      Message 2 of 6 , Oct 11, 2008
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        Hi Nicole,

        Thank you for your note. I really appreciated the time you took to write
        me. I got in touch with a researcher at Vanderbilt who is going to let me
        know of what further testing that I need to do for Angelmans. So maybe
        we'll finally have some answers.

        Thanks again,
        Jeanne

        _____

        From: familiesofangelmansyndrome@yahoogroups.com
        [mailto:familiesofangelmansyndrome@yahoogroups.com] On Behalf Of Wells
        Nicole
        Sent: Friday, October 10, 2008 2:20 PM
        To: familiesofangelmansyndrome@yahoogroups.com
        Subject: Re: [Families of Angelman Syndrome] Re: No mutation for
        Angelman..know what?

        Just to let you know, our son Brandon had 2 negative tests before the
        positive test in December 2005. From everything that I have read and the
        people that I have talked to it is possible to get a false negative but you
        will NEVER get a false positive. Does that make sense? I know a lot of
        families that have the first one or two tests come back negative but then
        get tested again a year or more later and it comes back positive. One
        reason for this (at least this is what I have heard), it that the test is so
        complex that the mutation is sometimes missed. I know that does not help
        you find a doctor but I just wanted to share this with you. When Brandon
        received his first 2 tests negative (both were done within a month of each
        other), we knew they were wrong because he showed all the signs and all the
        doctors were convinced. The one thing I can tell you is stay strong and
        keep fighting for you daughter.
        Nicole mom to 3 including 1 angel age 7 Brandon

        --- On Fri, 10/10/08, wendy cheetham <wendycheetham@
        <mailto:wendycheetham%40yahoo.com> yahoo.com> wrote:

        From: wendy cheetham <wendycheetham@ <mailto:wendycheetham%40yahoo.com>
        yahoo.com>
        Subject: [Families of Angelman Syndrome] Re: No mutation for Angelman..know
        what?
        To: familiesofangelmans
        <mailto:familiesofangelmansyndrome%40yahoogroups.com>
        yndrome@yahoogroups.com
        Date: Friday, October 10, 2008, 11:29 AM

        --- In familiesofangelmans yndrome@yahoogro ups.com, "Jeanne"
        <jeanneis@.. .> wrote:
        >Hi Jeanne, my nameis Wendy my son dose have angelmans andwe went
        tother web site and got the list of dr. thereare only a handfull but we
        saw they were around big citys all over the U.S. Check it out you just
        might find one around you good luck and God bless.
        > We think our daughter has Angelmans but the test just came back, no
        > mutation. She seems to be more like Angelmans than Rett, like we
        > thought she had all these years. She's 13. We'd like to go see a
        > specialist in Angelmans. We live in the Dallas area, but are willing
        > to travel anywhere. Can someone give us a recommendation of who to
        go
        > see?
        >
        > Thank you,
        > Jeanne Adams
        > Ashley 13
        >

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



        [Non-text portions of this message have been removed]
      • Jeanne Adams
        Hi Wendy, Thank you for your note. I really appreciated the time you took to write me. I got in touch with a researcher at Vanderbilt who is going to let me
        Message 3 of 6 , Oct 11, 2008
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          Hi Wendy,

          Thank you for your note. I really appreciated the time you took to write
          me. I got in touch with a researcher at Vanderbilt who is going to let me
          know of what further testing that I need to do for Angelmans. So maybe
          we'll finally have some answers.

          Thanks again,
          Jeanne


          _____

          From: familiesofangelmansyndrome@yahoogroups.com
          [mailto:familiesofangelmansyndrome@yahoogroups.com] On Behalf Of wendy
          cheetham
          Sent: Friday, October 10, 2008 1:30 PM
          To: familiesofangelmansyndrome@yahoogroups.com
          Subject: [Families of Angelman Syndrome] Re: No mutation for Angelman..know
          what?

          --- In familiesofangelmans
          <mailto:familiesofangelmansyndrome%40yahoogroups.com>
          yndrome@yahoogroups.com, "Jeanne"
          <jeanneis@...> wrote:
          >Hi Jeanne, my nameis Wendy my son dose have angelmans andwe went
          tother web site and got the list of dr. thereare only a handfull but we
          saw they were around big citys all over the U.S. Check it out you just
          might find one around you good luck and God bless.
          > We think our daughter has Angelmans but the test just came back, no
          > mutation. She seems to be more like Angelmans than Rett, like we
          > thought she had all these years. She's 13. We'd like to go see a
          > specialist in Angelmans. We live in the Dallas area, but are willing
          > to travel anywhere. Can someone give us a recommendation of who to
          go
          > see?
          >
          > Thank you,
          > Jeanne Adams
          > Ashley 13
          >



          [Non-text portions of this message have been removed]
        • wendy cheetham
          Hi there Jeaane ,  I so glad to hear that . How is your daughter doing today . I pray she is doing well . My   ... From: Jeanne Adams
          Message 4 of 6 , Oct 11, 2008
          • 0 Attachment
            Hi there Jeaane ,
             I so glad to hear that . How is your daughter doing today . I pray she is doing well . My  

            --- On Sat, 10/11/08, Jeanne Adams <jeanneis@...> wrote:

            From: Jeanne Adams <jeanneis@...>
            Subject: RE: [Families of Angelman Syndrome] Re: No mutation for Angelman..know what?
            To: familiesofangelmansyndrome@yahoogroups.com
            Date: Saturday, October 11, 2008, 10:41 AM






            Hi Wendy,

            Thank you for your note. I really appreciated the time you took to write
            me. I got in touch with a researcher at Vanderbilt who is going to let me
            know of what further testing that I need to do for Angelmans. So maybe
            we'll finally have some answers.

            Thanks again,
            Jeanne


            _____

            From: familiesofangelmans yndrome@yahoogro ups.com
            [mailto:familiesofangelmans yndrome@yahoogro ups.com] On Behalf Of wendy
            cheetham
            Sent: Friday, October 10, 2008 1:30 PM
            To: familiesofangelmans yndrome@yahoogro ups.com
            Subject: [Families of Angelman Syndrome] Re: No mutation for Angelman..know
            what?

            --- In familiesofangelmans
            <mailto:familiesofa ngelmansyndrome% 40yahoogroups. com>
            yndrome@yahoogroups .com, "Jeanne"
            <jeanneis@.. .> wrote:
            >Hi Jeanne, my nameis Wendy my son dose have angelmans andwe went
            tother web site and got the list of dr. thereare only a handfull but we
            saw they were around big citys all over the U.S. Check it out you just
            might find one around you good luck and God bless.
            > We think our daughter has Angelmans but the test just came back, no
            > mutation. She seems to be more like Angelmans than Rett, like we
            > thought she had all these years. She's 13. We'd like to go see a
            > specialist in Angelmans. We live in the Dallas area, but are willing
            > to travel anywhere. Can someone give us a recommendation of who to
            go
            > see?
            >
            > Thank you,
            > Jeanne Adams
            > Ashley 13
            >


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