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RE: [Families of Angelman Syndrome] New Member

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  • Lori Morris
    We are blessed, the school district we are in is amazing for special needs children. She gets 2-one-on-one sessions a week at the school and then we have
    Message 1 of 20 , Oct 13, 2006
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      We are blessed, the school district we are in is amazing for special needs
      children. She gets 2-one-on-one sessions a week at the school and then we
      have Children's Special Health Care through Medicaid, that covers the home
      visits for Rachel's PT. that lady is amazing.



      We will try the genetic tests again next year when she is 4-year-old.



      Thanks



      Lori



      _____

      From: familiesofangelmansyndrome@yahoogroups.com
      [mailto:familiesofangelmansyndrome@yahoogroups.com] On Behalf Of Robbie
      Montgomery
      Sent: Thursday, October 12, 2006 1:47 PM
      To: familiesofangelmansyndrome@yahoogroups.com
      Cc: familiesofangelmansyndrome@yahoogroups.com
      Subject: Re: [Families of Angelman Syndrome] New Member



      Hi,

      The same thing happened to us with Sawyer. She had two blood tests that
      came back negative but then we saw a geneticist and they found she had two
      15s from her daddy. ( She has always liked him a lot and we know why now)
      They took blood from both Roy and I to determine this. I
      hope it helps. I believe the condition is called Uniparental Disomy. From
      what I understand there are 4 different ways for Angleman Syndrome to
      manifest. So, there may be a test that they haven't done yet.

      It has helped me greatly to listen/read about other families with AS too.
      Right now I am fighting about PT at her school. PT co-treats with APE for
      20 minutes on C days. This means she gets physical therapy in a group once
      or twice a week depending on the special rotation schedule. I am
      frustrated because she has only had PT twice in two months from the
      school. Sawyer isn't able to attend all day yet because she just gets sooo
      exhausted and still requires a 2 -3 hour nap. This summer we got PT
      through the hospital and I have kept it going because she hasn't gotten
      what she needs at school yet. I hate compromising when it comes to her
      services. I feel like I am not doing for her what she needs/deserves.

      Take care,

      Robbie, mom to Sawyer, female age 5 Uniparental Disomy





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    • Lori Morris
      So, far the basic blood work. Which came back negative, the genetic doctor wants to wait until she is 4 to try again. That s next year. Our neurologist is
      Message 2 of 20 , Oct 13, 2006
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        So, far the basic blood work. Which came back negative, the genetic doctor
        wants to wait until she is 4 to try again. That's next year.

        Our neurologist is certain. He has been dealing with AS a good portion of
        his career.

        Thanks,

        lori



        _____

        From: familiesofangelmansyndrome@yahoogroups.com
        [mailto:familiesofangelmansyndrome@yahoogroups.com] On Behalf Of Mother
        Saguaro
        Sent: Thursday, October 12, 2006 12:20 PM
        To: familiesofangelmansyndrome@yahoogroups.com
        Subject: Re: [Families of Angelman Syndrome] New Member



        Hi Lori,

        My son tested negative for AS four years ago. He had the test that tests for
        a deletion of chromosome 15. Well he has two 15s so that test came back
        negative. This summer he had another test that looks for the other genetic
        abnormalities that cause AS. Both of his 15s are from his father which means
        he has AS. Has you daughter had all of the tests availible? I believe the
        test that Ian had was a methylation test.

        Just thought I would toss that in there. Welcome!

        Amy
        ----- Original Message -----
        From: Lori Morris
        To: familiesofangelmans
        <mailto:familiesofangelmansyndrome%40yahoogroups.com>
        yndrome@yahoogroups.com
        Sent: Thursday, October 12, 2006 6:02 AM
        Subject: RE: [Families of Angelman Syndrome] New Member

        Yes, we have been doing therapy for 2 years. Rachel started the school
        system's program this past June. We still have a PT that comes to our home
        twice a week. She has improved, but slightly in 2 years. We give her seizure
        meds as well. The diagnosis is confusing since her blood work shows no signs
        of AS. However, our neurologist has be diagnosing AS for years and said not
        all kids show up in blood tests. We pray allot!! Are current support group
        is our friends and family. But I decided to start expanding that to families
        dealing with AS. It's the closest thing we have to go by as a guideline.
        Thanks..Lori

        _____

        From: familiesofangelmans
        <mailto:familiesofangelmansyndrome%40yahoogroups.com>
        yndrome@yahoogroups.com
        [mailto:familiesofangelmans
        <mailto:familiesofangelmansyndrome%40yahoogroups.com>
        yndrome@yahoogroups.com] On Behalf Of Rob and
        Nadia Vankosky
        Sent: Thursday, October 12, 2006 12:18 AM
        To: familiesofangelmans
        <mailto:familiesofangelmansyndrome%40yahoogroups.com>
        yndrome@yahoogroups.com; cstults@ralcomm. <mailto:cstults%40ralcomm.net> net
        Subject: RE: [Families of Angelman Syndrome] New Member

        Hi there,

        Our son Mason is 2 1/2 and is deletion positive. Do you have access to an
        early intervention program of any sort? Occupational therapy? Physical
        therapy? Speech language? A support system of any kind will be your biggest
        help. As soon as we got these services in place, Mason took off. We live
        in Lloydminster, Alberta, Canada, so our services might be different than
        yours. Mason has been having seizures for about the past 5 months and is
        finally starting to get them under control. Before his seizures started he
        was crawling, pulling himself up, sitting, and crawling up stairs. After his

        seizures started he slid back almost a year, to the point where he was just
        laying there. We're starting to clear out of the fog and he's back to
        sitting and crawling. One step at a time.

        Secondly, how do you feel about your daughter's potential diagnosis?

        Nadia
        >From: "lborraccio" <lp33@wowway. <mailto:lp33%40wowway.com> com>
        >Reply-To: familiesofangelmans
        <mailto:familiesofangelmansyndrome%40yahoogroups.com>
        yndrome@yahoogroups <mailto:yndrome%40yahoogroups.com> .com
        >To: familiesofangelmans
        <mailto:familiesofangelmansyndrome%40yahoogroups.com>
        yndrome@yahoogroups <mailto:yndrome%40yahoogroups.com> .com
        >Subject: [Families of Angelman Syndrome] New Member
        >Date: Tue, 10 Oct 2006 13:05:22 -0000
        >
        >Good Morning,
        >
        >My name is Lori Morris, my family and I live in Troy, MI. Rachel is 3-
        >years-old, she does not crawl, stand alone, walk or talk. She is still
        >spoon fed, drinks from a bottle, wears diapers and sleeps in a crib.
        >She suffers from brain seizures. We've done genetic testing which shows
        >there is no medical explanation for her developmental problems. She
        >attends school year round now at a special needs school, Bovenschen in
        >Warren, MI.
        >
        >Dr. Harry Chugani, her neurologist, would bet his career that Rachel is
        >an Angleman child. However, the genetic testing is negative for AS. We
        >feel we need to find some support group to help deal with her
        >situation. Since he is so strongly focused on AS, we thought we would
        >head that direction.
        >
        >
        >
        >
        >

        __________________________________________________________
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      • heather
        Just wondering if any of you could offer advice. I believe my 15 month old neice may have Angelman Syndrome. We initially thought she may have Rett s
        Message 3 of 20 , Oct 29, 2006
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          Just wondering if any of you could offer advice. I believe my 15
          month old neice may have Angelman Syndrome. We initially thought she
          may have Rett's syndrome but doctors believe it could be Angelmans.
          She has not yet been tested for either. She has been developmentally
          behind since about 6 months. She is sitting up (since 10 mo) and even
          pulling up now. She is not yet speaking, or really making any sounds
          at all. Every once in a while she will make some sounds but not
          often, mainly just laughter if she does make noise. She has not had
          any seizure activity... but when she wakes sometimes she has spells of
          shaking. She also has had episodes of gasping for air. She has very
          light hair, skin and eyes. She laughs and bounces all the time. Is
          very affectionate. She is very shaky when she is trying to accomplish
          a task. other symptoms include... strong fascination w/ water,
          unparallel eyes, very small can't seem to gain weight, eats all the
          time, reflux problems, microcephaly, feeding difficulties, protruding
          tongue much of the time, little sleep required. Please let me know if
          this sounds similar to your experience. Thank You!!
        • Wells Nicole
          That all sounds like my Brandon. He did not sit up as early as that or try to pull up but all of the other stuff sounds like him. If they have not already
          Message 4 of 20 , Oct 30, 2006
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            That all sounds like my Brandon. He did not sit up as early as that or try to pull up but all of the other stuff sounds like him. If they have not already they may want to have an EEG done. Brandon would shake when he woke up and gasp for air when he was sleeping and we did not think it was anything but then at the age of 3 the bus driver saw him do it and told me that was a seizure. We took him to the doctor and they confirmed it was in fact a seizure. We felt terrible that this had been going on for months but we had NO knowledge of seizures.

            Hope everything works out for you.

            Nicole mother of Brandon age 5

            heather <heatherseabourn@...> wrote: Just wondering if any of you could offer advice. I believe my 15
            month old neice may have Angelman Syndrome. We initially thought she
            may have Rett's syndrome but doctors believe it could be Angelmans.
            She has not yet been tested for either. She has been developmentally
            behind since about 6 months. She is sitting up (since 10 mo) and even
            pulling up now. She is not yet speaking, or really making any sounds
            at all. Every once in a while she will make some sounds but not
            often, mainly just laughter if she does make noise. She has not had
            any seizure activity... but when she wakes sometimes she has spells of
            shaking. She also has had episodes of gasping for air. She has very
            light hair, skin and eyes. She laughs and bounces all the time. Is
            very affectionate. She is very shaky when she is trying to accomplish
            a task. other symptoms include... strong fascination w/ water,
            unparallel eyes, very small can't seem to gain weight, eats all the
            time, reflux problems, microcephaly, feeding difficulties, protruding
            tongue much of the time, little sleep required. Please let me know if
            this sounds similar to your experience. Thank You!!






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          • charlotte987794
            Hello everyone, I am a mum to Jude 6 years old and isabelle 2 and a half who was diagnosed during the middle of last year. Up to now i have been coping well
            Message 5 of 20 , Feb 5, 2007
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              Hello everyone,
              I am a mum to Jude 6 years old and isabelle 2 and a half who was
              diagnosed during the middle of last year. Up to now i have been coping
              well dealing with ups and downs of an angel child, but lately i am
              feeling really emotional and thought it would be good to chat to other
              parents who understand.
            • Teri Fronk
              Hi, I know how hard it can be to deal with the emotions of being mom to an Angel child. I hope we can help you with what you need! Teri Fronk ... From:
              Message 6 of 20 , Feb 5, 2007
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                Hi,

                I know how hard it can be to deal with the emotions of being mom to an Angel child. I hope we can help you with what you need!

                Teri Fronk

                ----- Original Message ----
                From: charlotte987794 <charlottelambert@...>
                To: familiesofangelmansyndrome@yahoogroups.com
                Sent: Monday, February 5, 2007 3:29:52 PM
                Subject: [Families of Angelman Syndrome] New Member













                Hello everyone,

                I am a mum to Jude 6 years old and isabelle 2 and a half who was

                diagnosed during the middle of last year. Up to now i have been coping

                well dealing with ups and downs of an angel child, but lately i am

                feeling really emotional and thought it would be good to chat to other

                parents who understand.














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              • SUSAN WINFREY
                Hello Charlotte, We ve all been where you are and it really does help to talk to someone about it. My son turned 2 in December and would be glad to help you.
                Message 7 of 20 , Feb 5, 2007
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                  Hello Charlotte,
                  We've all been where you are and it really does help to talk to someone about it. My son turned 2 in December and would be glad to help you. I have good and bad days myself, if there are any specifics I can help with let me know. Hang in there. Susan

                  charlotte987794 <charlottelambert@...> wrote:
                  Hello everyone,
                  I am a mum to Jude 6 years old and isabelle 2 and a half who was
                  diagnosed during the middle of last year. Up to now i have been coping
                  well dealing with ups and downs of an angel child, but lately i am
                  feeling really emotional and thought it would be good to chat to other
                  parents who understand.






                  [Non-text portions of this message have been removed]
                • momanddad28
                  ... coping ... other ... Welcome, My name is Jean and our angel is Robert, 18 years old this month. One thing you can count on here is support. Our family has
                  Message 8 of 20 , Feb 5, 2007
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                    --- In familiesofangelmansyndrome@yahoogroups.com, "charlotte987794"
                    <charlottelambert@...> wrote:
                    >
                    > Hello everyone,
                    > I am a mum to Jude 6 years old and isabelle 2 and a half who was
                    > diagnosed during the middle of last year. Up to now i have been
                    coping
                    > well dealing with ups and downs of an angel child, but lately i am
                    > feeling really emotional and thought it would be good to chat to
                    other
                    > parents who understand.
                    >
                    Welcome,
                    My name is Jean and our angel is Robert, 18 years old this month. One
                    thing you can count on here is support. Our family has had every
                    emotion that can possibly go along with having an angel. We are in a
                    good place right now, but can certainly remember times when it is so
                    overwhelming you can't believe that anyone else could possibly
                    understand, be assured, you are not alone! Emotion is actually a good
                    thing, because when I am feeling really down, and don't think I can do
                    this another minute, Robert smiles (you know the smile) and all is
                    right with the world again.God Bless and keep the faith!
                    Jean
                  • airheads6@aol.com
                    Welcome Jude! huggggggggs, you will find great support and information here! Its normal to have ups and downs I believe, it can at times be so overwhelming. My
                    Message 9 of 20 , Feb 6, 2007
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                      Welcome Jude! huggggggggs, you will find great support and information here!
                      Its normal to have ups and downs I believe, it can at times be so
                      overwhelming. My four yr old son was diagnosed last June, so it has not been a year for us
                      either, and I have my times, believe me! I tend to worry alot as it is and
                      now , more then ever. What I did notice though on the postive side, that no
                      matter what mood I am in, I can always count on my angel for that irresitable
                      smile and laugh and never ending hugs, and for that moment at least, I can deal
                      with anything :)
                      Please feel free to email anytime !! airheads6@..., Sandi


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