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Re: saw genetisist today...debbi

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  • Helen
    Thank you for your response Debbi. Hopefully it won t take the whole time. I can of suspect our insurance comp. to start denying thing. We have started to have
    Message 1 of 4 , Oct 21, 2004
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      Thank you for your response Debbi. Hopefully it won't take the whole
      time. I can of suspect our insurance comp. to start denying thing.
      We have started to have to provide a lot of explinations to get them
      to pay for things. It is a shame that with all there is to deal with
      an insurance company has to be one more! I'll keep you posted.

      Helen:)


      --- In cerebralpalsyclub@yahoogroups.com, "punkindebbi"
      <punkindebbi@y...> wrote:
      >
      > Helen,
      >
      > My daughter, Gracie, has been through all of the same testing that
      > your daughter is now going through. I just want to say first off
      > that they always told me the tests would take up to two months and
      > they never did take the full time! I found that helpful since the
      > waiting is so very hard. Gracie had a total of three series of
      these
      > tests and all have come back normal. At one point, we were
      thinking
      > she had Prader Willey and that one was very scarey because she had
      a
      > lot of the symptoms, but thankfully the test was normal. She was
      > also tested for Angelman's and that was ruled out by 70% and
      > insurance will not pay for the furter testing because it costs
      > thousands of dollars. Mediteranean Fever was also a big scare and
      > she had to have a series of tests done once when she had a high
      > fever. It is like a roller coaster ride with all of the emotions
      > that you go through when your child is having all of this testing
      > done. I found it very helpful that I trusted our geneticist
      > completely and he has an assisant that I called a few times when I
      > was very scared and she talked me out of it.
      >
      > I am wishing you luck with Madisyn's testing! Hang in there, I
      know
      > it isn't easy but you will get through. Feel free to write me if
      you
      > need to!
      > Debbi Mommy to Caleb 4 and Gracie 2
      > punkindebbi@y...
      >
      >
      > --- In cerebralpalsyclub@yahoogroups.com, "Helen" <girlee831@h...>
      > wrote:
      > >
      > > Madisyn went to the genetisist today. They are now testing for a
      > > whole new group of things. They're testing for Angelman, fragile
      X,
      > > Retts, a FISH for 15q, carbohydrate deficiency and another
      > metobolic
      > > disorder I have never heard of. Now it is the waiting game. The
      dr
      > > said some of the test will take up to 10 weeks. A week feels
      like a
      > > year when waiting for test results! Maybe will will find more
      > > awnsers though.
      > >
      > >
      > > Helen:)
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