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Re: [Families of Angelman Syndrome] Newly diagnosed

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  • Karen Newman
    Oh, I forgot to say that there is no name for the test because it was a completely new test. Maybe your geneticist can communicate with Children s somehow.
    Message 1 of 11 , Dec 31, 2005
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      Oh, I forgot to say that there is no name for the test because it was a completely new test. Maybe your geneticist can communicate with Children's somehow.

      Karen Newman <daridakn@...> wrote: There is no real "name" for this test. You will just have to talk to your geneticist about this.
      Sorry if this doesn't help you.
      Karen

      wanda coletta <wandacoletta@...> wrote:
      Do you know the name of the test done? Was it a signature clip test? I am grasping at straws! I am pretty convienced Dante has AS but there is no further testing they can do to confirm the diagnosis.

      Karen Newman <daridakn@...> wrote: Dear Wanda,
      I don't know if this message was addressed to me, but if it was, the testing that came out positive (or showing the amino acid change) was a completely different test because they were looking more closely at the UBE3A region. It wasn't that they made a mistake the first time, it was just that they needed to look more closely. I don't think I mentioned this before, but they told me that there has never been a documented case (for AS) of this amino acid change, so this is something undiagnosed childrens' families should consider.

      The information the geneticists should know is that Children's Hospital in Denver Colorado and Baylor University did the testing. All of the geneticists at Children's are aware of the testing done on our family. My angels names are Micah and Lukas Newman.
      Karen



      wanda coletta <wandacoletta@...> wrote:
      I was just wondering if all four tests for AS were negative, and if they ran the SAME tests again and it was positive or if they did another test,
      I have a 3 yr old who has all the characteristics of AS but all four tests have been negative.

      knw2860 <knw2860@...> wrote:
      We just received the news 2 days ago that my 4 year old son tested
      postive for A.S. I have done some research on it since they have
      thought he has had it for about 3 years.

      I am limited on time since we are at my parents house (which is not
      Brandon proof) but I was wondering if anyone else has had a negative
      result, which we had about 3 years ago and then got a positive result.

      Every time we take him to a new specialist they always ask if he has
      been tested. We had him tested a few years ago in Michigan and it was
      negative and we recently moved to Florida where his new doctor wanted
      him tested again since he has so many characteristics and now he tested
      positive.

      Thanks for listening.

      Nicole mother of Brandon age 4





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