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Re: [Families of Angelman Syndrome] Hello

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  • r sonstegard
    We recently went to Minnesota to see my husband s family and go to his youngest sisters high school graduation party. Our daughter, Alexandrianna, is 4 and
    Message 1 of 13 , Jul 18 8:58 PM
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      We recently went to Minnesota to see my husband's family and go to his youngest sisters high school graduation party. Our daughter, Alexandrianna, is 4 and this was her first really long trip (besides when we went to MN when she was a newborn). She did good on the way up there--slept all the way but on the way back she was cranky. We do go on 2 hour trips to the children's hospital once a month and sometimes she does good and sometimes she cries and fusses the whole way.

      Becky

      Jennifer Posey <jposey83@...> wrote:
      Hello Everyone

      The group must be on vacation no one has wrote in a while. We went on a trip also but we were only gone for 2 days. I have a question. We went on a 4 hour trip, and Christopher 3 years old whined the entire time it was very hard on me to hear him whine like that and there is nothing I can do for him. Even when we got out he was still pretty cranky and he wouldn't eat. I know his routine means a lot to him, but usually as long as he has me he does fairly well. So I just wanted to know if any one else's angel would fuss non stop in any car ride. Hope everyone is enjoying this hot summer.

      Talk to you soon

      Jennifer, Christopher And Brianna




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    • miss_priss_602
      I have been doing my own research trying to come up with my daughters diagnosis. I came across Angel Syndrome! I am almost certain she has this. I typed in
      Message 2 of 13 , Aug 28, 2005
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        I have been doing my own research trying to come up with my daughters
        diagnosis. I came across Angel Syndrome! I am almost certain she has
        this. I typed in neurological problems and contagious and
        inappropriate laughing and not much else is popping up and she has
        almost all the symptoms down. I wasn't expecting to find this so
        easily, cuz previously I just typed in microcephaly, developmental
        delay, and tons of things pop up this, I am sooo happy this might be
        what she has because we were told they weren't sure if she had a
        regressing disorder or not and every time something goes wrong, we
        are like oh know she's going to die!She is the sweetest baby I have
        ever met! Her geneticist was stumped said see ya later! LOL we'll
        guess we'll be seeing him! Unless we are suppose to see her
        neurologist? Any one know if it matters? I can deal with a special
        needs child, I just am glad to know she has a good chance of being
        around a long time! That's all I want, a happy baby and a baby that
        aint going no where. I'm going to type a little history and if any
        one has any comments about what they think or similarities with their
        kids lemme know

        It appeared to be a normal birth, I noticed immediately crossing of
        the eyes (strabismus has had 2 surgeries to correct this), noticed
        smiling for nor reason around 2-3 months, was having trouble breast
        feeding.. worked better on the bottle up intill about 6 months of
        age, developed a sensitivity or trouble drinking from a bottle. Had
        an MRI neurologist thought she was regressing, had mild demilination,
        was becoming stiff and always moving in a jerky pattern. She is
        delayed still working on sitting up and head control. I sit her up
        she falls to the side, microcephaly, sweats easily!, sometimes has
        trouble passing bowels, always making tongue movements or opening and
        closing the mouth, her teeth are filling in, all have little spaces
        between each, loves noises, has a contagious giggle, have a hard time
        changing diapers or clothes, has flat feet, big toe usually sticking
        up, hands fisted often, still does the fencing reflex when turns head
        to the side, working on her torticollis,trouble sleeping is the
        biggest problem! When I hold her up her walking reflex kicks in she
        looks like the marshmallow man walking..lol sweet as can be,very
        loving! loves movement and to be bounced vigoursly. always trying to
        put things in her mouth, she pinches and pulls my hair a lot.

        I'm just curious what your kids do or don't do

        Much respect,

        Priscilla
      • miss_priss_602
        ... daughters ... has ... be ... their ... demilination, ... and ... time ... sticking ... head ... to ... Also wondering if doctors initially thought your
        Message 3 of 13 , Aug 28, 2005
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          --- In familiesofangelmansyndrome@yahoogroups.com, "miss_priss_602"
          <priscillathorson@h...> wrote:
          > I have been doing my own research trying to come up with my
          daughters
          > diagnosis. I came across Angel Syndrome! I am almost certain she
          has
          > this. I typed in neurological problems and contagious and
          > inappropriate laughing and not much else is popping up and she has
          > almost all the symptoms down. I wasn't expecting to find this so
          > easily, cuz previously I just typed in microcephaly, developmental
          > delay, and tons of things pop up this, I am sooo happy this might
          be
          > what she has because we were told they weren't sure if she had a
          > regressing disorder or not and every time something goes wrong, we
          > are like oh know she's going to die!She is the sweetest baby I have
          > ever met! Her geneticist was stumped said see ya later! LOL we'll
          > guess we'll be seeing him! Unless we are suppose to see her
          > neurologist? Any one know if it matters? I can deal with a special
          > needs child, I just am glad to know she has a good chance of being
          > around a long time! That's all I want, a happy baby and a baby that
          > aint going no where. I'm going to type a little history and if any
          > one has any comments about what they think or similarities with
          their
          > kids lemme know
          >
          > It appeared to be a normal birth, I noticed immediately crossing of
          > the eyes (strabismus has had 2 surgeries to correct this), noticed
          > smiling for nor reason around 2-3 months, was having trouble breast
          > feeding.. worked better on the bottle up intill about 6 months of
          > age, developed a sensitivity or trouble drinking from a bottle. Had
          > an MRI neurologist thought she was regressing, had mild
          demilination,
          > was becoming stiff and always moving in a jerky pattern. She is
          > delayed still working on sitting up and head control. I sit her up
          > she falls to the side, microcephaly, sweats easily!, sometimes has
          > trouble passing bowels, always making tongue movements or opening
          and
          > closing the mouth, her teeth are filling in, all have little spaces
          > between each, loves noises, has a contagious giggle, have a hard
          time
          > changing diapers or clothes, has flat feet, big toe usually
          sticking
          > up, hands fisted often, still does the fencing reflex when turns
          head
          > to the side, working on her torticollis,trouble sleeping is the
          > biggest problem! When I hold her up her walking reflex kicks in she
          > looks like the marshmallow man walking..lol sweet as can be,very
          > loving! loves movement and to be bounced vigoursly. always trying
          to
          > put things in her mouth, she pinches and pulls my hair a lot.
          >
          > I'm just curious what your kids do or don't do
          >
          > Much respect,
          >
          > Priscilla

          Also wondering if doctors initially thought your kids might have had
          regressive disorders before the AS diagnosis
        • miss_priss_602
          I was wondering if any of your angels have low WBC or have had any medicine that gave um low WBC s?
          Message 4 of 13 , Sep 30, 2005
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            I was wondering if any of your angels have low WBC or have had any
            medicine that gave um low WBC's?
          • locl36
            Hi, Im am new to this group. My grandson is 3. He has recently been tested for AS. We do not have results as of yet. He is a very happy little boy. He doesn t
            Message 5 of 13 , Dec 23, 2007
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              Hi,
              Im am new to this group. My grandson is 3. He has recently been
              tested for AS. We do not have results as of yet. He is a very happy
              little boy. He doesn't talk yet, but makes his needs known in other
              ways. He has a habit of biting. He bites any chance he gets. I am
              aware that he is not doing this to hurt anyone and doesn't even
              realize he is causing pain as he explays great delight when he bites
              and the person he bites yells out :). Does anyone else have this
              issue? If so, are there any ideas how to discourage him from biting?
              He has caused injury at times. Our family is used to it and knows how
              to avoid it, but he will be starting school soon and we hope to learn
              ideas so as another child isn't hurt.

              Thanks
              Lucy
            • starr5959
              It just popped up on a search today , that in 2001 I joined this group. My graddaughter at the time was going thru the testing stage . Wow... as I read back
              Message 6 of 13 , Jan 8, 2008
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                It just popped up on a search today , that in 2001 I joined this
                group.
                My graddaughter at the time was going thru the testing stage .

                Wow... as I read back over those earlier post I made.

                As it turns out , in 2002 , we did find our DX, Rett Syndrome.

                I dont know any other way to put this, so here goes.

                Alexis was born on 7/8/99, she lived with me her Nana for most of
                her life. she passed away on 7/5/06.

                SHE will forever be part of me, forever she will have my heart.

                I miss her each and every day.

                hugs and forever butterfly kisses from Maine.
              • Andy Stoelting
                Let me introduce myself I am Andy Stoelting and I have a 21 year old child with Angelmans syndrome. He has been very challengeing to raise and I hope some of
                Message 7 of 13 , May 22, 2012
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                  Let me introduce myself I am Andy Stoelting and I have a 21 year old "child" with Angelmans syndrome. He has been very challengeing to raise and I hope some of mine and my wife's experience can help others in dealing with this type of special child

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                • Harmony Franco
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                  Message 8 of 13 , Dec 4, 2014
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                    real adult shows
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