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SV: [Families of Angelman Syndrome] Re: New member

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  • Anja Worsøe Reiff
    Arthur has problems drinking as well. I find that it helps to warm his beverage - water, herb-tea, juice mixed with water etc. I just put his cup in the
    Message 1 of 34 , Apr 1, 2006
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      Arthur has problems drinking as well. I find that it helps to warm his
      beverage - water, herb-tea, juice mixed with water etc. I just put his cup
      in the microwave and heat up to na nice temperatur - not hot not cold. It
      makes drinking easier for him. Anja

      -----Oprindelig meddelelse-----
      Fra: familiesofangelmansyndrome@yahoogroups.com
      [mailto:familiesofangelmansyndrome@yahoogroups.com] På vegne af Susan Hawk
      Sendt: 31. marts 2006 20:15
      Til: familiesofangelmansyndrome@yahoogroups.com
      Emne: Re: [Families of Angelman Syndrome] Re: New member


      Isabella is on Depakote and she is constipated all the
      time too. We have been trying to give her apple juice
      a lot, but she doesn't like it and we have a hard time
      getting her to drink much. I've also tried Benefiber
      putting it in her juice or milk and she does okay, but
      she still is constipated a lot of the time. Sue

      --- seandelaneyangel <seandelaneyangel@...>
      wrote:

      > Delaney does not sleep the best, but it is not
      > horrible. The worst
      > thing is that she mostly sleeps in bed with my
      > husband and myself:)
      > We have not noticed any negative side effects with
      > the Sal-Tropine
      > on Delaney. She did take Robinul before the
      > Sal-Tropine and the
      > Robinul seemed to really constipate her!!!
      >
      > Kerri
      >
      > --- In familiesofangelmansyndrome@yahoogroups.com,
      > Monica Yalan
      > Chang <piopio9@...> wrote:
      > >
      > > Dear Kerri
      > > Thanks for sharing the infomation to us.
      > > Does Delaney has any problem to sleep? When she
      > took the
      > drooling pill, any side effect on her?
      > > What is different between voice output device
      > and DynaMyte? I
      > have check the website, and see this machine looks
      > like a ipot, is
      > it the one you are talk about?
      > > How did you trained delaney to run? I have
      > trained Natasha to
      > run for so long and the teacher also think she is
      > going to run in
      > any day now, but as I can see, she just walks fast
      > :)
      > >
      > > Rgds
      > > Monica
      > >
      > >
      > > Kerri Van Briesen <seandelaneyangel@...> wrote:
      > > Hi Shannon
      > >
      > > The test they ran was called an Angelman Syndrome
      > UBE3A Sequence
      > Analysis. The test results also said something about
      > PCR
      > amplification (whatever that is:)). I am looking
      > through Delaney's
      > baby book now and it looks like she comando crawled
      > at 16 1/2
      > months, crawled on all fours at 20 months. Walked at
      > 26 months.
      > >
      > > Delaney is now running and we are working on
      > jumping. She uses a 7-
      > level communication builder for a voice output
      > device and we will be
      > purchasing her a DynaMyte this summer. She uses
      > about 10-12 signs
      > and lots of gestures:)
      > >
      > > Delaney is on seizure medication (30 mg of
      > Lamictal 2x a day). She
      > has been on this for about 1 1/2 years now for some
      > drop seizures
      > she was having. We also give her Sal-Tropine to help
      > dry up her
      > drooling!!!
      > >
      > > Feel free to email me anytime if you have more
      > questions!!
      > >
      > > Take Care
      > > Kerri
      > >
      > > Shannon wrote:
      > > Hi Kerri!! Welcome!! My son, Evan (14 mos) just
      > tested deletion
      > > negative, but I have a feeling they may do more
      > testing to see if
      > he
      > > has another form of Angelman's. What kind of
      > testing did they do
      > > for Delaney to diagnose her as UBE3A? What type of
      > delays and/or
      > > symptoms does she have? Evan still doesn't sit or
      > crawl, but
      > really
      > > has no other symptoms. No sleeping problems, no
      > seizures. He does
      > > jerk a little, but only when he is tired. We are
      > in PT and OT now
      > > and he progresses daily. Does Delaney walk and if
      > so when did she
      > > start walking? I look forward to hearing from you.
      > I know so
      > > little about this syndrome, especially the
      > nondeletion forms.
      > >
      > > Thanks,
      > > Shannon
      > >
      > >
      > > --- In
      > > familiesofangelmansyndrome@yahoogroups.com,
      > "seandelaneyangel"
      > > wrote:
      > > >
      > > > Hi - my name is Kerri and my daughter is
      > Delaney. Delaney will
      > be
      > > 5
      > > > in June and is diagnosed with the UBE3A form of
      > AS. She was
      > > diagnosed
      > > > at 2 1/2 years of age. I have just posted some
      > pictures of her
      > if
      > > you
      > > > want to check them out:)!! Delaney is a very
      > active little girl.
      > > She
      > > > goes to a sped preschool and will go to
      > Kindergarten next year
      > > where
      > > > she will be fully included into her Kindergarten
      > class. She
      > loves
      > > to
      > > > take swimming lessons and dance class. She also
      > loves to play
      > > with
      > > > her big brother Sean and attend all of his
      > baseball games in the
      > > > summer!! We will be purchasing a DynaMyte for
      > Delaney to use for
      > > > communication in the near future. She currently
      > is using a 7-
      > > Level
      > > > Communication Builder and is doing very well
      > with it. Delaney is
      > > > pretty good about letting us know what she wants
      > or needs by
      > > gesturing
      > > > and signs. She became fully potty trained during
      > the day at
      > > Christmas
      > > > time, but still wears a diaper at night, so this
      > was pretty huge
      > > for
      > > > her:) I look forward to being a part of this
      > group and learning
      > > more
      > > > about the other kids here!!!
      > > >
      > > > Kerri
      > > >
      > >
      > >
      > >
      > >
      > >
      > >
      > >
      > > ---------------------------------
      > > YAHOO! GROUPS LINKS
      > >
      > >
      > > Visit your group "familiesofangelmansyndrome" on
      > the web.
      > >
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      > >
      >
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      > >
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      === message truncated ===


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    • Laurie
      Hi Susan! My little one Josh just turned 18 months on the 1st! Wow, such close birthdays! Josh is also deletion +. We are just starting to get hooked in to
      Message 34 of 34 , Jun 2, 2006
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        Hi Susan!
        My little one Josh just turned 18 months on the 1st! Wow, such
        close birthdays! Josh is also deletion +. We are just starting to
        get hooked in to therapies, we have our intake appointment coming up
        in a couple of weeks. He is crawling, sitting sturdy, feeding
        himself dry foods, drinking from sippy cup, a whole plethora of
        things. So, he is doing well, for not having any intervention yet.
        Can't wait to get working on the walking! Oh please let this kid
        walk soon! Moms of non-AS kids keep telling me, that mobility isn't
        all it's cracked up to be, but I keep telling them, neither is
        carrying them everywhere! :) We were just diagnosed on May 1st, so
        this is all still very new to us, and sometimes overwhelming, and
        sometimes very heartwrenching. We are in the San Francisco Bay Area.
        Tell me more about Ian! When was he diagnosed?
        Take Care,
        Laurie

        --- In familiesofangelmansyndrome@yahoogroups.com, SUSAN WINFREY
        <okswinfrey@...> wrote:
        >
        > Sonya and Laurie,
        > Girls please feel free to personally drop me
        a few lines or either way is o.k. my son will be 18 months on 6-6,
        tell me where you two live, I'm from Grove, Oklahoma, Grand Lake. I
        would love to compare notes and therapys. Are your angels
        deletions?, Ian is.
        >
        Write back,
        >
        Susan
        >
        > Laurie <greg.and.laurie@...> wrote:
        > Welcome Sonya!
        > I just recently found this little home as well. Our sweet little
        > boy was just diagnosed at 17 months which was only 3 weeks ago.
        > Can't wait to get to know you and your little one better!
        > Take Care,
        > Laurie
        >
        > -- In familiesofangelmansyndrome@yahoogroups.com, "sonyahedge"
        > <sonyahedge@> wrote:
        > >
        > > So glad I found you guys! My sweet boy was diagnosed at 1 year
        of
        > age
        > > and now is 17 months. I have quickly discovered my best
        resource
        > will
        > > be through other parents. I have spent too much time on the net
        > today
        > > while at work and will be back on Monday. Can not WAIT to make
        a
        > > connection in this world... that until now my son was the only
        one
        > it
        > > seemed. All of the photos of the children are so beautiful and
        > all
        > > resemble my son in many ways. I cannot wait to tell my husband
        > that I
        > > have found a wonderful resource for info and advice!!!!!!!! So
        > excited.
        > >
        >
        >
        >
        >
        >
        >
        >
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