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Re: [Families of Angelman Syndrome] New Member

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  • Kathy Leonard
    Hi Michelle, Welcome to the group! It s good you are seeking out information. Support from other families really helps because you know you are not alone.
    Message 1 of 20 , Jan 28, 2005
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      Hi Michelle,

      Welcome to the group! It's good you are seeking out information. Support from other families really helps because you know you are not alone. Also, the great thing about Angel parents is you can say anything, or ask anything, and we won't think anything,, because we have been there two.

      With two angels it may be a little different, only because most people have one.

      Since you are new to any group I guess my first question would be,, do you have any questions? Anything you do need advice on? Therapies? Speech, mobility?

      Since you gave an intro, i guess so you know something about me. My name is Kathy and i live in Michigan. I am married with 3 angels. The kids were diagnosed with AS about three years ago, Mandy is 13, Angie is 7 and Rocky is 3. I am also married to a man who must be one of the most patient people i know!

      It's great to hear from you and feel free to post again!
      Kathy





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    • Ann Watters
      Hello Michelle, I am so happy that there is a site like this where we can talk to other families with AS children since there is so little information out
      Message 2 of 20 , Jan 28, 2005
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        Hello Michelle, I am so happy that there is a site like this where we can talk to other families with AS children since there is so little information out there. My son is only 5 and was diagnosed at the age of 8 months with AS. We were fortunate to have a lot of great people to work with him from early on. Even though we are just beginning our journey with him, we already know that a lot of what we have been told about AS children is not true. He continues to surprise us and his teachers. You are the first person that I have talked to since I am also new at this. Ann, Kansas

        micy1974 <micy1974@...> wrote:
        Hello, I am a new at this. but thought I would give it a shot. I am
        a mother 2 yes 2 Angels. I have twins who will be 8 in Mar. They both
        have Angelman syndrome. I found out about 3 yrs ago.. at the age of 2
        or so, they told me they had CP. They really are pretty good kids.
        They have so much love in their hearts. Always Smiling you know.
        Always willing to give you the BIGGEST hugs. I never joined a group
        because when I found out there was little info to be found about AS.
        So, now I guess I want to talk to others with Little Angels as well.
        Thanks
        Michelle, Indiana





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      • r sonstegard
        Hello. My daughter, Alexandrianna, was diagnosed with Angelman syndrome when she was 2. She was originally thought to have Pradeur-Willi syndrome. She will be
        Message 3 of 20 , Jan 29, 2005
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          Hello. My daughter, Alexandrianna, was diagnosed with Angelman syndrome when she was 2. She was originally thought to have Pradeur-Willi syndrome. She will be 4 on April 22. She is the youngest of 8 children--3 mine, 2 his, and then 3 ours. We live in Iowa. This isn't a very active group but wanted to say hello and welcome anyway.

          Becky

          micy1974 <micy1974@...> wrote:

          Hello, I am a new at this. but thought I would give it a shot. I am
          a mother 2 yes 2 Angels. I have twins who will be 8 in Mar. They both
          have Angelman syndrome. I found out about 3 yrs ago.. at the age of 2
          or so, they told me they had CP. They really are pretty good kids.
          They have so much love in their hearts. Always Smiling you know.
          Always willing to give you the BIGGEST hugs. I never joined a group
          because when I found out there was little info to be found about AS.
          So, now I guess I want to talk to others with Little Angels as well.
          Thanks
          Michelle, Indiana





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          To visit your group on the web, go to:
          http://groups.yahoo.com/group/familiesofangelmansyndrome/

          To unsubscribe from this group, send an email to:
          familiesofangelmansyndrome-unsubscribe@yahoogroups.com

          Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.





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        • kishap317
          Hi my name is Rakisha I live in Indianapolis. I have a 2 year old son with AS. Knowing this has been very hard for my husband and I this is our first child and
          Message 4 of 20 , Feb 18, 2005
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            Hi my name is Rakisha I live in Indianapolis. I have a 2 year old
            son with AS. Knowing this has been very hard for my husband and I
            this is our first child and we are both very young ourselves. We are
            just looking for someone to talk to. Our son (Duane) has recently
            been put on depakote for his seizures. With this medication he has
            had more but very short seizures. He is also on Clonidine for
            sleeping. We have not heard of any families with AS where we live.
            Hopefully there is someone around us who knows how we feel.

            Thanks,

            Rakisha
          • tammy_olson2003
            Hi - This is my first chance to talk about all that has happend. This may get REAL LONG sorry and thank you for taking the time to read. I am Tammy. My angel
            Message 5 of 20 , Sep 30, 2005
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              Hi -
              This is my first chance to talk about all that has happend. This may
              get REAL LONG sorry and thank you for taking the time to read.
              I am Tammy. My angel is my niece that my husband and I have custody
              of. She will be 4 on the 6th of October. We have had real good Dr.s
              and therapists. We go to therapy 2 - 4 days a week. Good insurance!!
              She was diagnosed in June of 02. I knew when I held her in the
              hospital that somthing was not right with her. She was not soft to
              hold like other childred are. She was wringing her hands all the
              time and her eyes would go off and she would leave mentally. She was
              hospitalized twice before she was 3 months old. Her mom (my sister)
              told the Dr that she would not eat and kept vomitting it back up so
              she quit feeding her.She had been given goats milk and it was not
              suggested by the dr. Reason #1 that we have her. While in the
              hospital she gained weight and ate normal formula. She even was
              alert more but would not bond with her mom. I was working at the
              time so I took time off to take care of her in the hospital. Yes her
              mom and dad were also there but did not even attempt to care for
              her. They chose to sleep or play vidoe games while others took care
              of her. Reason #2. So to shorten this up a bit she is a beautiful
              little girl. She has the blonde hair and the blue eyes. She looks
              like the typical AS child and has all the energy of one. She started
              walking on the 31st of Dec last year. The same week she finally got
              her walker. She no longer will even use it which is good. She will
              say a few words and use them correctly. She is working with the PECS
              system, sign language as well as augmentative. Yes she is a very
              bright and busy girl. I left my job when we got custody of her since
              we were committed to her. Our goals were to bring her to the highest
              functioning AS we could. Her genetisist has told us not to bring her
              back in for 2 years. She could not believe how well she was doing.
              This dr said that she was a very high functioning AS child. We were
              sooo proud of her. She is the happiest and the most giving kid. I
              really enjoy her. She still sees her parents once a week and they
              are divorced so this is stressful for her but we do the brushings ,
              the weighted blankets , the music , the rotation with her so she
              calms down when she sees me. She enjoys most of her therapys. I have
              looked forward to them as well since she will do something new at
              least once a week for us. She has found a little friend in one of
              her sessions and we all look forward to watching her actually play
              with him. We are laughing and smiling soo much that our sides
              andfaces hurt when we leave. OH her name is Britt. Yes she has
              seizures as well. She is currently taking topomax. This has been the
              only one that she has been on and is working well for her. Thank you
              for the time with this and hope to get back on with questions that I
              have.

              Tammy - Britt's Auntie Momma
            • lborraccio
              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
              Message 6 of 20 , Oct 10, 2006
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                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.
              • Rob and Nadia Vankosky
                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
                Message 7 of 20 , Oct 11, 2006
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                  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@...>
                  >Reply-To: familiesofangelmansyndrome@yahoogroups.com
                  >To: familiesofangelmansyndrome@yahoogroups.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.
                  >
                  >
                  >
                  >
                  >

                  _________________________________________________________________
                  Ready for the world's first international mobile film festival celebrating
                  the creative potential of today's youth? Check out Mobile Jam Fest for your
                  a chance to WIN $10,000! www.mobilejamfest.com
                • Lori Morris
                  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.
                  Message 8 of 20 , Oct 12, 2006
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                    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: familiesofangelmansyndrome@yahoogroups.com
                    [mailto:familiesofangelmansyndrome@yahoogroups.com] On Behalf Of Rob and
                    Nadia Vankosky
                    Sent: Thursday, October 12, 2006 12:18 AM
                    To: familiesofangelmansyndrome@yahoogroups.com; cstults@...
                    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.com
                    >To: familiesofangelmans
                    <mailto:familiesofangelmansyndrome%40yahoogroups.com>
                    yndrome@yahoogroups.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.
                    >
                    >
                    >
                    >
                    >

                    __________________________________________________________
                    Ready for the world's first international mobile film festival celebrating
                    the creative potential of today's youth? Check out Mobile Jam Fest for your
                    a chance to WIN $10,000! www.mobilejamfest.com





                    [Non-text portions of this message have been removed]
                  • Mother Saguaro
                    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
                    Message 9 of 20 , Oct 12, 2006
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                      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: familiesofangelmansyndrome@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: familiesofangelmansyndrome@yahoogroups.com
                      [mailto:familiesofangelmansyndrome@yahoogroups.com] On Behalf Of Rob and
                      Nadia Vankosky
                      Sent: Thursday, October 12, 2006 12:18 AM
                      To: familiesofangelmansyndrome@yahoogroups.com; cstults@...
                      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.com
                      >To: familiesofangelmans
                      <mailto:familiesofangelmansyndrome%40yahoogroups.com>
                      yndrome@yahoogroups.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.
                      >
                      >
                      >
                      >
                      >

                      __________________________________________________________
                      Ready for the world's first international mobile film festival celebrating
                      the creative potential of today's youth? Check out Mobile Jam Fest for your
                      a chance to WIN $10,000! www.mobilejamfest.com

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





                      [Non-text portions of this message have been removed]
                    • Robbie Montgomery
                      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
                      Message 10 of 20 , Oct 12, 2006
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                        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
                      • 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 11 of 20 , Oct 13, 2006
                        • 0 Attachment
                          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





                          [Non-text portions of this message have been removed]
                        • 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 12 of 20 , Oct 13, 2006
                          • 0 Attachment
                            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 13 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 14 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 15 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 16 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 17 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 18 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 19 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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