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Re: where to begin....

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  • Sue Harris
    -Hi Adrianne; Welcome! I know that what you are going through is hard, we ve all been there and you ve come to the right place to cope. My daughter Teagan
    Message 1 of 3 , May 28, 2004
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      -Hi Adrianne;
      Welcome! I know that what you are going through is hard, we've all
      been there and you've come to the right place to cope. My daughter
      Teagan will be 3 on the 15th, she has been diagnoised with clinical
      Angelman and we are still waiting on the UBE3A results. She did not
      sit until she was 13 mos and walked at 27 mos. She has seizures but
      we are unable to get them on an EEG. I'd be happy to answer any
      questions you have. I'll let you know what's worked for Teagan,
      what didn't etc. My advice to you is follow your heart- you know
      what's best for Zoe ( i love that name ) and be very pro active in
      her therapies.
      I look forward to talking to you,
      All my best
      Sue



      -- In familiesofangelmansyndrome@yahoogroups.com, "Adrianne"
      <devilanne100@y...> wrote:
      > Hello everyone, my name is Adrianne and I have a daughter who is
      > being tested for Angelman syndrome. Her name is Zoe and she is 22
      > months old. I'm so lost right now Im not sure where to begin
      except
      > to say that I'm looking for SOMEONE to talk to, someone else who
      has
      > a child with angelman's and who can help me take those first steps.
      > We've had a long, heartbreaking road with Zoe. She started having
      > seizures when she was three days old. While the seizures where
      hard
      > to cope with, it wasn't too bad since I myself have a seizure
      > disorder and I know what she goes through. About a month ago they
      > diagnosed her with PDD-NOS. It was kind of a shock for us since we
      > just thought she was "behind" and there was nothing as extensive
      as
      > an autism spectrum disorder. Today her neurologist ordered the
      > genetic test for angelman. Of course the first thing I did was
      rush
      > home and look up as much information as I could find on it. I'm
      > hopefull that she may not have it, but she displays so many of the
      > characteristics that I don't want to be overly optamistic. Zoe was
      > always a little behind with the developmental stuff, she didn't
      hold
      > her head well until 4 months, she didn't sit up till 8 months, she
      > didn't walk til 14 months. She's always been "clumsy" and falls
      > alot. She still doesn't say any words although she babbles
      > constantly. Her one asset has always been that she's such a
      cheerful
      > child, smiling and good natured. She laughs so hard when we make
      > faces or play tag running around the house. I never expected THAT
      to
      > be a symptom of a syndrome. She is pale skinned, blond hair, blue
      > eyes, but that runs in our family (at least). She goes for a
      > speech/ot/pt evaluation next week, which I'm sure they'll want all
      > three with her. I was wondering how that worked for any of the
      other
      > moms (and dads) out there. I know that there are different degress
      > of angelman, but it is always good to hear a wide range of how
      other
      > children are doing. That's the one thing they don't post on those
      > information sites.
      > Anyway, sorry for the long post. If anyway responds I will be very
      > greatfull. I was really hoping to find someone to chat with, and
      > would appreciate that SOOO much. My aol nick is demonanne, and my
      > yahoo is devilanne100.
      > -Adrianne
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