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  • deletion15mom
    -Hi Bobbie, I m new in this here but have a four year old angel named Aden diagnosed two years ago. I enjoyed reading about Kye and am glad to hear he is
    Message 1 of 6 , Nov 9, 2005
      -Hi Bobbie,

      I'm new in this here but have a four year old angel named Aden
      diagnosed two years ago. I enjoyed reading about Kye and am glad to
      hear he is surrounded by a loving family. I was greatly saddened to
      hear of the massive number of seizures poor Kye has suffered
      through. I was reading some of the description and wanted to ask
      you about his teeth; many angels have wide-spaced teeth that are
      slightly smaller than normal and usually have a much smaller head
      size. The tongue tends to push out a lot more than your average kid
      but NOT always real thick. Has Kye had reflux, trouble swallowing,
      gagging, and vomiting? The delays in sitting up and walking and no
      talking seem pretty on target for an angelman child. I also was
      wondering if the first blood test was only checking for deletion on
      chromosome 15 and NOT also for mutation or permutation on that
      strand of dna. There are many angels without the positive deletion
      and they have had to go through so much more as far as getting a
      firm diagnosis.

      I'm so pleased you are receiving intervention services like PT and
      OT. Also, lots of warm hugs, kisses and physical contact is really
      good for angels. When my son was a baby and young toddler he
      physically was uncomfortable being held and we had a lot of "wiggly-
      worm" activity from him but we just kept touching him and hugging
      him. Also his muscles in his legs and feet were so very tight so we
      did a lot of massaging.

      Aden had a terrible time on the swing at first at the OT's and
      used to almost be terrified when we even spun it slow. Now we have
      a hammock in the backyard and he jumps in with us for almost 5
      minutes at a time. The therapist mentions hippocampus therapy and
      told us to give him rides in the stroller and the little red wagon
      and this strengthens some special skills for them. Also, horseback-
      riding keeps coming up with such good reports. I don't know if you
      have a stables near you but where I live a riding stables offers
      free riding lessons to special children. Aden loves the horse and
      the rides. Three of us walk beside him for safety. He wears a
      little helmut and his balance has improved so much. He can now run
      and he moves like a cowboy but we are so happy! Maybe, you can ask
      OT's and PT's if they know of any "extra" stuff that can help Kye
      and be great fun at the same time.(FREE stuff)

      Look forward to hearing more about Kye and whether his diagnosis
      gets firmed up.

      Holly and Aden 4 (deletion pos age 2)


      -- In familiesofangelmansyndrome@yahoogroups.com, "sandylot_2"
      <sandylot_2@y...> wrote:
      >
      > Hi, we are still waiting on the lab results on Kye to see if he is
      an
      > angle or not. A little back ground on Kye-He started having
      seizures
      > at age 8 months, having anywhere from 1 to 200 in a single day.
      These
      > were the full blown grand mal seizures and a few times he did
      almost
      > stop breathing. He spent alot of time in the hospital, at
      different
      > clinics, and finially went to Denver Childrens Hospital, in
      Denver,
      > Colo. where he was being seen for his seizures. The nero thought
      he
      > had AS a year ago, but the first blood work came back negative so
      we
      > went on from there. Still thinking he had AS the nero sent us to a
      > genetic clinic in Denver which he was at the 3rd of Oct. as of yet
      > still haven't heard for sure what is going on. Kye has gotten
      better
      > about his seizures having only 2 in the last month or so.
      >
      > Kye is 3 years old and hasn't ever talked in his life. He has just
      in
      > the last few months started blowing on his hand and making (fart)
      > sounds and has learned how to make the sound, with his mouth
      without
      > using his hands. He has always liked to chew on his hands-so they
      are
      > alway wet and cold. He has started to laugh at certain things, but
      > sometimes seems very disinterested in what is going on around him.
      We
      > had a hard time in getting him to eat, but now he will eat about
      > anything, loves cheese burgers, from McD., not too wild about frys
      > though. He eats alot of soft foods that he really doesn't have to
      > chew, but is getting better about chewing and using his tongue to
      > move his food around so he can chew. He started sitting up by
      himself
      > around age 1yr and walking about age 2yr. He has never done the
      hand
      > shaking, that I have read about, and does not have the thick
      tongue
      > that I've read about either. He has PT, speech therapy and OP
      therapy
      > anywhere for weekly to every two weeks starting at about age 9
      > months. We have been so very lucky that we have in our area a
      group
      > that works with kids and it doesn't cost us anything.
      >
      > Kye has a little brother, Jase, age 2yrs. Jase has developed
      normally
      > in everyway-but he doesn't talk either. He will point and
      say 'See'or
      > he will say 'DaDa'. He has never had any seizures but will not
      talk.
      >
      > Kye and Jase are both being raised by their Dad, my youngest son.
      The
      > boys Mom left about 1 1/2years ago and only sees them when it fits
      > her schedule. They have gotten divorced and Dustin has full
      > guardianship of the boys. And thanks to my older boys wife, has a
      > baby sitter for both the boys while he work. I do pick the boys up
      in
      > the evenings after I get off work and feed them supper, since I am
      > off before Dustin is.
      >
      > Sorry this is long, just wanted to say Hi and hope I can learn
      more
      > about AS here from Moms and Dads that have Angles!
      >
      > Bobbie, grandma to Kye age 3yrs and Jase 2yrs
      >
    • bobbie toole
      I have thought of that, but where they are both being babysit by a Mother of 5yr. old twins that have been around both boys since they were born I wonder if
      Message 2 of 6 , Nov 9, 2005
        I have thought of that, but where they are both being babysit by a Mother of 5yr. old twins that have been around both boys since they were born I wonder if this could be the cause. The girls are always talking to the boys and showing them books and toys-telling them what is on a certain page. The girls have more or less adopted the boys as their little brothers and love them to death. Worry if one of the boys is sick alway taking care of them. So its not like the younger boy isn't around speaking kids-don't know. Will just have to keep trying.
        Bobbie

        ettinashee <ettinasatot@...> wrote:
        I wonder if the younger boy is imitating his big brother? This
        reminds me (again, not trying to insult Angels with this example) of
        a person who, as an experiment, raised his son and a chimpanzee as
        if they were twins, the human child started mimicing chimpanzee
        speech rather than talking. I also heard of a younger sibling of an
        autistic kid who barely talked because he was imitating his older
        brother.
        Then again, he could have apraxia of speech or something similar
        (apraxia of speech means they can't coordinate the muscles involved
        in talking, common in Angels but happens in kids who are autistic,
        LD/ADHD or have no other differences as well).
        Ettina
        --- In familiesofangelmansyndrome@yahoogroups.com, "sandylot_2"
        <sandylot_2@y...> wrote:
        >
        > Hi, we are still waiting on the lab results on Kye to see if he is
        an
        > angle or not. A little back ground on Kye-He started having
        seizures
        > at age 8 months, having anywhere from 1 to 200 in a single day.
        These
        > were the full blown grand mal seizures and a few times he did
        almost
        > stop breathing. He spent alot of time in the hospital, at
        different
        > clinics, and finially went to Denver Childrens Hospital, in
        Denver,
        > Colo. where he was being seen for his seizures. The nero thought
        he
        > had AS a year ago, but the first blood work came back negative so
        we
        > went on from there. Still thinking he had AS the nero sent us to a
        > genetic clinic in Denver which he was at the 3rd of Oct. as of yet
        > still haven't heard for sure what is going on. Kye has gotten
        better
        > about his seizures having only 2 in the last month or so.
        >
        > Kye is 3 years old and hasn't ever talked in his life. He has just
        in
        > the last few months started blowing on his hand and making (fart)
        > sounds and has learned how to make the sound, with his mouth
        without
        > using his hands. He has always liked to chew on his hands-so they
        are
        > alway wet and cold. He has started to laugh at certain things, but
        > sometimes seems very disinterested in what is going on around him.
        We
        > had a hard time in getting him to eat, but now he will eat about
        > anything, loves cheese burgers, from McD., not too wild about frys
        > though. He eats alot of soft foods that he really doesn't have to
        > chew, but is getting better about chewing and using his tongue to
        > move his food around so he can chew. He started sitting up by
        himself
        > around age 1yr and walking about age 2yr. He has never done the
        hand
        > shaking, that I have read about, and does not have the thick
        tongue
        > that I've read about either. He has PT, speech therapy and OP
        therapy
        > anywhere for weekly to every two weeks starting at about age 9
        > months. We have been so very lucky that we have in our area a
        group
        > that works with kids and it doesn't cost us anything.
        >
        > Kye has a little brother, Jase, age 2yrs. Jase has developed
        normally
        > in everyway-but he doesn't talk either. He will point and
        say 'See'or
        > he will say 'DaDa'. He has never had any seizures but will not
        talk.
        >
        > Kye and Jase are both being raised by their Dad, my youngest son.
        The
        > boys Mom left about 1 1/2years ago and only sees them when it fits
        > her schedule. They have gotten divorced and Dustin has full
        > guardianship of the boys. And thanks to my older boys wife, has a
        > baby sitter for both the boys while he work. I do pick the boys up
        in
        > the evenings after I get off work and feed them supper, since I am
        > off before Dustin is.
        >
        > Sorry this is long, just wanted to say Hi and hope I can learn
        more
        > about AS here from Moms and Dads that have Angles!
        >
        > Bobbie, grandma to Kye age 3yrs and Jase 2yrs
        >






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      • bobbie toole
        deletion15mom wrote: I was reading some of the description and wanted to ask you about his teeth; many angels have wide-spaced teeth
        Message 3 of 6 , Nov 9, 2005
          deletion15mom <deletion15mom@...> wrote:
          I was reading some of the description and wanted to ask
          you about his teeth; many angels have wide-spaced teeth that are slightly smaller than normal and usually have a much smaller head
          size.

          Kye's teeth are normal, and not wide spaced, his head is average-some what smaller but not much.

          The tongue tends to push out a lot more than your average kid but NOT always real thick.

          His tongue doesn't push out, but he does have his mouth open most of the time, so is constantly drooling all over the place.

          Has Kye had reflux, trouble swallowing,
          gagging, and vomiting?

          Kye did have reflux as an infant, in and out of the hospital for that. He did have some trouble swallowing at first, but has gotten to where that doesn't bother him anymore.

          I also was
          wondering if the first blood test was only checking for deletion on
          chromosome 15 and NOT also for mutation or permutation on that
          strand of dna.

          I am not sure what type of test they first ran, just know it came back negative. I don't know for sure if they are doing the FISH test this time or what. I wasn't able to go with him and his Dad to Denver when they had these test done. Just hope that when he goes back the 21st of this month they will know something.

          I'm so pleased you are receiving intervention services like PT and
          OT. Also, lots of warm hugs, kisses and physical contact is really
          good for angels.

          Kye loves to be held and hugged on. He will come up to you and put his arms up so you will pick him up-I usually give him a big kiss and hug and tell him 'I love you' before putting him down. Since he is getting alot more indepentant he doesn't like to sit on your lap long like he use to.

          Also his muscles in his legs and feet were so very tight so we
          did a lot of massaging.

          Kye also likes to have his legs and feet massaged. That is one thing his PT wanted us to do regularly for him. It also helped to relax him after he would have seizures so bad.

          Aden had a terrible time on the swing at first at the OT's and
          used to almost be terrified when we even spun it slow.

          Kye was also, he would tense up and hold his arms straight out in front of him. Now he seems to enjoy the swing and likes to have his cousins push him.

          Maybe, you can ask
          OT's and PT's if they know of any "extra" stuff that can help Kye
          and be great fun at the same time.(FREE stuff)

          I had never thought about horseback riding, but I bet he would like it. We have a friend that lives in the country that has horses for his kids, maybe we can get Kye out there some when it is nice weather.

          Look forward to hearing more about Kye and whether his diagnosis
          gets firmed up.

          Thanks for writing, and I love hearing about other kids and what they are doing and what we can do to help them. I will let you know when we find out about the test. thanks again Bobbie

          Holly and Aden 4 (deletion pos age 2)




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          Visit your group "familiesofangelmansyndrome" on the web.

          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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