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  • schnapps555
    Hi, My name is Cathy and I am currently a junior special education major at Elizabethtown College. I am currently do a research project on Angelman Syndrome
    Message 1 of 11 , Oct 14, 2005
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      Hi,

      My name is Cathy and I am currently a junior special education major
      at Elizabethtown College. I am currently do a research project on
      Angelman Syndrome and signed up here to find out more about Angelman
      from the parent ad family viewpoint.

      ~Cathy
    • lacey gutcher
      Well hello cathy and welcome to the angelman group. What would you like to know? I am the mother of a little boy who will be 2 next weekend who has AS. Lacey
      Message 2 of 11 , Oct 14, 2005
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        Well hello cathy and welcome to the angelman group. What would you like to know? I am the mother of a little boy who will be 2 next weekend who has AS.



        Lacey



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      • Yolonda Mclaughlin
        HI CATHY, OUR BABY IS 19 MONTHS OLD WITH AS. ANYTHING WE CAN DO TO HELP ? DROP A LINE. TALK TO YOU LATER. Y. MCLAUGHLIN& T. WATSON ... From: schnapps555 Date:
        Message 3 of 11 , Oct 15, 2005
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          HI CATHY,
          OUR BABY IS 19 MONTHS OLD WITH AS. ANYTHING WE CAN DO TO HELP ? DROP A LINE.
          TALK TO YOU LATER.
          Y. MCLAUGHLIN& T. WATSON


          -------Original Message-------

          From: schnapps555
          Date: 10/14/05 16:56:46
          To: familiesofangelmansyndrome@yahoogroups.com
          Subject: [Families of Angelman Syndrome] Hello!

          Hi,

          My name is Cathy and I am currently a junior special education major
          at Elizabethtown College. I am currently do a research project on
          Angelman Syndrome and signed up here to find out more about Angelman
          from the parent ad family viewpoint.

          ~Cathy






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        • schnapps555
          Hi, I have to be honest I do not know that much about Angelman and I am eager to learn so I m sorry if any of my questions seem rude or intrusive. Please feel
          Message 4 of 11 , Oct 18, 2005
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            Hi,

            I have to be honest I do not know that much about Angelman and I am
            eager to learn so I'm sorry if any of my questions seem rude or
            intrusive. Please feel free to answer or not answer in as much or
            as little detail as you are comfortable sharing. That being said I
            have so many questions I don't know where to start!

            1) When and how was your child diagnosed?
            2) What are your bigget fears and concerns for your child?
            ex) like what things are you concerned about educationally,
            medically, and socially
            3) I've heard that about 80% of children with Angelman also have
            epilepsy; does your child also have epilepsy?
            4) I know that both of your children are young but have they seemed
            to exhibit any behaviors similar to autism, like hand flapping?
            5) What kinds of changes have you had to make in your lifestyle due
            to your child's diagnosis?
            6) When your child enters school what is it that you want his/her
            teacher to know?
            7) Do you have any other children?
            8) What things does your child have trouble doing?
            9) Is your child behind in their development compared to other
            children their age? If so, how far behind and in what areas?
            10)Is there anything else that you want me to know or think I should
            know?
            11) Do you know of any advocacy groups for Angelman? Are you a part
            of any?
            12) What organizations, chat rooms, website, clinics, or other
            places have helped you learn more and cope?
            13) What kind of support do you get from family and friends?

            again, I'm sorry if I phrase things in a rude matter but I am really
            interested in learning more and hearing your story. Thank you for
            taking the time to read through these questions and hopefully
            answering one or two of them.
            Thank you!

            ~Cathy


            --- In familiesofangelmansyndrome@yahoogroups.com, "Yolonda
            Mclaughlin" <yolonda.mclaughlin@s...> wrote:
            >
            > HI CATHY,
            > OUR BABY IS 19 MONTHS OLD WITH AS. ANYTHING WE CAN DO TO HELP ?
            DROP A LINE.
            > TALK TO YOU LATER.
            > Y. MCLAUGHLIN& T. WATSON
            >
            >

            >Well hello cathy and welcome to the angelman group. What would you
            like to know? I am the mother of a little boy who will be 2 next
            weekend who has AS.



            Lacey
          • sara good
            Hi, Cathy. I am a proud parent of a two year old son named Joshua with Angelman Syndrome. If you have any questions please feel free to email me. What
            Message 5 of 11 , Oct 20, 2005
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              Hi, Cathy. I am a proud parent of a two year old son named Joshua with Angelman Syndrome. If you have any questions please feel free to email me. What inspired you to research this syndrome?

              Donna

              schnapps555 <schnapps555@...> wrote:
              Hi,

              My name is Cathy and I am currently a junior special education major
              at Elizabethtown College. I am currently do a research project on
              Angelman Syndrome and signed up here to find out more about Angelman
              from the parent ad family viewpoint.

              ~Cathy





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            • sara good
              Hello. I would love to answer your questions. I hope to hear about the research you conducted. Hope this helps and please keeep me updated. 1) When and how
              Message 6 of 11 , Oct 23, 2005
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                Hello. I would love to answer your questions. I hope to hear about the research you conducted. Hope this helps and please keeep me updated.
                1) When and how was your child diagnosed? Joshua was diagnosed in April of 2005. One month before his second birthday. He was diagnosed at Cardinal Glennon Childrens Hospital in St. Louis Missouri. We took him to local doctors but they had no idea what was wrong. They told me he was just "retarded" and that I would never know why. I quickly left the office and took him to St. Louis where their are real doctors. They did a Methalyation test which came back positive for Angelman Syndrome. They were actually running a test for Prader-Willi Syndrome which affects chromosome 15 as well...paternally. Then they run the FISH test to see if he was deletion positive. This came back negative. And the chromosome had no deletion. In December we go back for UPD testing. Which may be that there are two paternal chromosomes and no maternal. However from my understanding at this point he has chromosome 15 it is just not active.


                2) What are your bigget fears and concerns for your child?
                ex) like what things are you concerned about educationally,
                medically, and socially I have many concerns but am no longer afraid. I am worried about his communication skills. We are now teaching him sign language and I am worried that in the school system locally there may not be someone there to take care of his needs adaquately. Medically I am not worried. Thank God he is been healthy for a while. I am worried about seizures. We have not experienced any that have been real severe- yet.
                3) I've heard that about 80% of children with Angelman also have
                epilepsy; does your child also have epilepsy? As of now he is not epileptic.
                4) I know that both of your children are young but have they seemed
                to exhibit any behaviors similar to autism, like hand flapping? Before we recieved the AS diagnosis I was for certain Josh was autistic. He does exhibit hand flapping. When he gets really excited or nervous he will flap his hands against the back of his head. He is also fearless. One day he took off outside- crawling and was about ready to dive off the porch before I caught him.


                5) What kinds of changes have you had to make in your lifestyle due
                to your child's diagnosis? I have not made any major changes since we always knew something was not right about Josh. Now with a diagnosis we have somewhat of a prognosis. So now the only change I have made is the way I think and look at the world. The sky is the limit. I know that he will be restricted with some of his development but, I will never put limits on what he can do. If anything I have decided that he is not "normal" and who wants to be "normal" anyway. That is boring. His bright smile lights up my life and because of him I have reason and hope.
                6) When your child enters school what is it that you want his/her
                teacher to know?

                Everything I do. I want them to know that taking care of an AS child can be very frustrating and I want them to feel the reward I do when he smiles or learns something new.


                7) Do you have any other children? Yes. I have a daughter who is 4. She does not have AS.


                8) What things does your child have trouble doing? Walking gives him the most trouble but, he will be getting eye surgery tomorrow to correct strabismus. And then we are predicting he should walk. He has trouble speaking but hopefully sign language will be his form of communication. He has really adapted to that more than other communication devices.


                9) Is your child behind in their development compared to other
                children their age? If so, how far behind and in what areas? He is two and is at the level of development of a one year old in his motor skills. Fine motor he is really behind as well as speech. He is now developing motor planning and pulling to midline with objects.


                10)Is there anything else that you want me to know or think I should
                know? All AS kids are different and not anyone of them are alike. They are unique and special. God's gift. I have seen so many children. I went to the annual AS walkathon in May and seen so many children. They all reminded me of Josh in appearance but, yet they were so individualized. I hope one day you can experience the company of a child with AS. A day of boredom never goes by when Josh is around. And they are so loving. Their love is the best.


                11) Do you know of any advocacy groups for Angelman? Are you a part
                of any? I just recently joined this parents forum and am joining the Angelman Syndrome Foundation.
                12) What organizations, chat rooms, website, clinics, or other
                places have helped you learn more and cope?
                13) What kind of support do you get from family and friends? My family and friends are very supportive. They have always loved Josh and love him even more. Same with me. I don't know how to say this- I have always loved him but since his diagnosis but, my love grows for him every day.

                Hope this helps. Please keep me updated on your research!

                --- In familiesofangelmansyndrome@yahoogroups.com, "Yolonda
                Mclaughlin" <yolonda.mclaughlin@s...> wrote:
                >
                > HI CATHY,
                > OUR BABY IS 19 MONTHS OLD WITH AS. ANYTHING WE CAN DO TO HELP ?
                DROP A LINE.
                > TALK TO YOU LATER.
                > Y. MCLAUGHLIN& T. WATSON
                >
                >

                >Well hello cathy and welcome to the angelman group. What would you
                like to know? I am the mother of a little boy who will be 2 next
                weekend who has AS.



                Lacey









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              • sunnyrooroo
                Hi, this my first time on this chat room. My 6 year old daughter was diagnosed with AS just a year ago and getting info and support has been a little slow
                Message 7 of 11 , Feb 18, 2006
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                  Hi, this my first time on this chat room. My 6 year old daughter was
                  diagnosed with AS just a year ago and getting info and support has
                  been a little slow going. Our pediatrician was good at getting us to
                  the right genetic doctor to get her diagnosed but after that I've been
                  kind of on my own. Thanks to her neurologist I stumbled upon The
                  Angelman Foundation. But what I've really needed was other families
                  to chat with for well worn advice and support!
                  Samantha(my angel), is getting alot easier to raise now that she is
                  getting older-But alot more difficult in many other aspects. I have
                  one guestion, well actually the first among many, that pertains to
                  seizures. She missed the AS diagnosis at first because she had never
                  had a seizure. But last May she finally had one, and a big long one
                  at that. The neurologist said that outside contributing factors
                  probably didn't predispose her seizure, but I think it did. She got
                  extemely over heated and over stimulated on a long walk. Has that
                  happened to anyone that could share their experience with me?
                  Thank-you.
                  Laura
                • pam danko
                  Welcome!!! I would have to say you are right Riley has seizures whenever she is overheated has a fever or learns a new skill and her neurologist agrees
                  Message 8 of 11 , Feb 18, 2006
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                    Welcome!!! I would have to say you are right Riley has seizures whenever she is overheated has a fever or learns a new skill and her neurologist agrees that all these things bring on seizures for her.Riley is 4 but she was diagnosed at 16 months and started seizures at 2 and a half. They are controlled by meds now and she doesn't have them often unless she is overheated, overstimulated or sick. Good Luck Pam

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                  • laura goelz
                    Thank you for your reply! I figured I was pretty correct in my hunch as I see her when she gets over stimulated or overheated. I know it has to have an
                    Message 9 of 11 , Feb 18, 2006
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                      Thank you for your reply! I figured I was pretty correct in my hunch as I see her when she gets over stimulated or overheated. I know it has to have an effect on her like that. The doctor has chose not to medicate her yet as she has had only one seizure. He said he needed to see what her sezuire pattern would be like and if he put her on meds now he would not know if it was the meds or her regular pattern. So we are on a wait and see plan. But I'm glad to hear that your child has had the same response because even with what the doctor said I have taken great measures at home and at school to make sure she is watched carefully for overheating and overstimulation.
                      So thanks again.
                      Laura

                      pam danko <pam_d28@...> wrote:
                      Welcome!!! I would have to say you are right Riley has seizures whenever she is overheated has a fever or learns a new skill and her neurologist agrees that all these things bring on seizures for her.Riley is 4 but she was diagnosed at 16 months and started seizures at 2 and a half. They are controlled by meds now and she doesn't have them often unless she is overheated, overstimulated or sick. Good Luck Pam

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                    • Carrie OConnor
                      i know i m new here and i m jumping in mid-conversation, but are all children talked about here definitely diagnosed with angelmans? does anyone have testing
                      Message 10 of 11 , Feb 18, 2006
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                        i know i'm new here and i'm jumping in mid-conversation, but are all children talked about here definitely diagnosed with angelmans? does anyone have testing that came back inconclusive? thanks!

                        laura goelz <sunnyrooroo@...> wrote: Thank you for your reply! I figured I was pretty correct in my hunch as I see her when she gets over stimulated or overheated. I know it has to have an effect on her like that. The doctor has chose not to medicate her yet as she has had only one seizure. He said he needed to see what her sezuire pattern would be like and if he put her on meds now he would not know if it was the meds or her regular pattern. So we are on a wait and see plan. But I'm glad to hear that your child has had the same response because even with what the doctor said I have taken great measures at home and at school to make sure she is watched carefully for overheating and overstimulation.
                        So thanks again.
                        Laura

                        pam danko <pam_d28@...> wrote:
                        Welcome!!! I would have to say you are right Riley has seizures whenever she is overheated has a fever or learns a new skill and her neurologist agrees that all these things bring on seizures for her.Riley is 4 but she was diagnosed at 16 months and started seizures at 2 and a half. They are controlled by meds now and she doesn't have them often unless she is overheated, overstimulated or sick. Good Luck Pam

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                      • laura goelz
                        Hi! Well I m most definatly not an expert but my daughter was tested for Angelman syndrome and it came back abnormal. But here is where it ended for us. My
                        Message 11 of 11 , Feb 18, 2006
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                          Hi! Well I'm most definatly not an expert but my daughter was tested for Angelman syndrome and it came back abnormal. But here is where it ended for us. My genetic doctor diagnosed her and ordered another blood test. It was to see if she had a complete deletion or just parts of the chromosome missing. I didn't get her blood work done for a couple of months because it is such an ordeal for her and us and the doctor moved out of the area. So I asked her Ped. to do the blood test and he said we could do it the next time she has blood work. It really confuses me.
                          But before this doctor tested her we really got the run around from other geneticist, because although she had some characteristics of AS, she did not have all of them.
                          We went for from the age of one to five with lots of genetic testing but everything came back normal. But the first geneticist we saw would not even test her for AS because she had not had seizures and she even said she consulted the board of her colleges at UC Davis and they did not think she had AS either. But we kept digging and found a diagnosis.
                          Does your child have the symptoms of Angelmans syndrome? Do you have confindence in your doctors and or tests that your child has been given? Like I said I'm not an expert but I know what it feels like not to get a clear answer and to desperatly want one, as I dealt with it for four years. I personally don't think the opinion of one doctor or blood test is the holy grail. Humans make mistakes and genetics are elusive even for the most trained eye. So I wish you the best of luck and I hope you get the answers you need soon. Also trust your gut instinct!!!
                          Laura

                          Carrie OConnor <carrieao24@...> wrote:
                          i know i'm new here and i'm jumping in mid-conversation, but are all children talked about here definitely diagnosed with angelmans? does anyone have testing that came back inconclusive? thanks!

                          laura goelz <sunnyrooroo@...> wrote: Thank you for your reply! I figured I was pretty correct in my hunch as I see her when she gets over stimulated or overheated. I know it has to have an effect on her like that. The doctor has chose not to medicate her yet as she has had only one seizure. He said he needed to see what her sezuire pattern would be like and if he put her on meds now he would not know if it was the meds or her regular pattern. So we are on a wait and see plan. But I'm glad to hear that your child has had the same response because even with what the doctor said I have taken great measures at home and at school to make sure she is watched carefully for overheating and overstimulation.
                          So thanks again.
                          Laura

                          pam danko <pam_d28@...> wrote:
                          Welcome!!! I would have to say you are right Riley has seizures whenever she is overheated has a fever or learns a new skill and her neurologist agrees that all these things bring on seizures for her.Riley is 4 but she was diagnosed at 16 months and started seizures at 2 and a half. They are controlled by meds now and she doesn't have them often unless she is overheated, overstimulated or sick. Good Luck Pam

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