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Re: [CEREBRAL PALSY CLUB] Question

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  • jenn bartimus
    Lynn Im not sure as to how severe your little one is.. But if you are worried about him being knocked down the he must walk. Sam has an aide that walks her
    Message 1 of 14 , Sep 9, 2002
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      Lynn
      Im not sure as to how severe your little one is.. But if you are worried about him being knocked down the he must walk. Sam has an aide that walks her through school to each and everything that she goes to.. The only place there is not an aide is on the bus because she sits in the front and her little brother sits beside her to keep her sat down.. shes only on the bus in the afternoons for about 5 minutes..
      Jenn
      Lynn A Downs wrote:Beginning on Monday, Christian will begin riding the regular school bus
      to school. Yea!!!!
      During his IEP ammendment meeting, it was brought up that he should
      perhaps have a dedicated aide. Her job would basically be to leave a few
      minutes early with him to give him a head start in getting to places the
      rest of the class is going, like the library, computer lab or music. She
      would be responsible for getting him on and off the bus at school and
      getting him down to the playground at recess. She will not help him with
      ADL or school work, just moving him safely between places.
      What do you think? Should I say okay to this?? There biggest concern is
      him being knocked over by another child in the hallway. His balance is
      unsteady and the crutches are hard to manuever when he is in a crowd.
      This way, no crowds, the kindergarten assistance doesn't have to leave
      the rest of the class to attend to Chris, and he will have adult
      supervision through out the school.

      Lynn

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    • Joanna
      Hi I have not posted in a while have ben very buisy with family stuff. What I would like to know is what is the procidure for having a child taken off the
      Message 2 of 14 , Jul 5 2:20 PM
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        Hi I have not posted in a while have ben very buisy with family stuff.
        What I would like to know is what is the procidure for having a child
        taken off the feeding tube. How long in general do they leave one in
        after the child is taking all nutrition and meds by mouth?

        YaYa X5

        Joanna <><<
        Psalm113v9@...
      • Mirce Trpeski
        Dears, My English is bad but I ll try...............I am 51 yr old man from Macedonia - Europe. After my brain stroke my former wife left me an our 13 yr
        Message 3 of 14 , Jul 7 12:42 AM
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          Dears,

          My English is bad but I'll try...............I am 51 yr old man from
          Macedonia - Europe. After my brain stroke my
          former wife left me an our 13 yr daughter. With very hardly health
          situation I was mother and father but i succeed to grow up my
          daughter. She became several times state shampion tennis player &
          exelent pupil. Becouse of that she earn full scholarship and now she
          play tennis and study for the university in USA so far from me. I am
          very proud of her. Now when my health is much beter exept litle
          problems with my left extremity i am very lonesome single man and I
          have to continue my life. Becouse of that I would like to know,meet,
          have connexion and to have long relationship with singles especially
          with womans who have providence alike me.

          Best Regards

          Veren

          Email: veren51@...


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        • Sue park
          It varries from child to child. Hope that your child won t take as long as some. Sue ... __________________________________ Do you Yahoo!? SBC Yahoo! DSL -
          Message 4 of 14 , Jul 7 11:27 PM
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            It varries from child to child. Hope that your child
            won't take as long as some.

            Sue

            --- Joanna <Psalm113v9@...> wrote:
            > Hi I have not posted in a while have ben very buisy
            > with family stuff.
            > What I would like to know is what is the procidure
            > for having a child
            > taken off the feeding tube. How long in general do
            > they leave one in
            > after the child is taking all nutrition and meds by
            > mouth?
            >
            > YaYa X5
            >
            > Joanna <><<
            > Psalm113v9@...
            >
            >


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          • Sue park
            when the doctor feels it is time to take the child off the tube thy simply just take it out and in time the hole will close ...
            Message 5 of 14 , Jul 29 7:00 PM
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              when the doctor feels it is time to take the child off
              the tube thy simply just take it out and in time the
              hole will close
              --- Sue park <susane_1975@...> wrote:
              > It varries from child to child. Hope that your
              > child
              > won't take as long as some.
              >
              > Sue
              >
              > --- Joanna <Psalm113v9@...> wrote:
              > > Hi I have not posted in a while have ben very
              > buisy
              > > with family stuff.
              > > What I would like to know is what is the procidure
              > > for having a child
              > > taken off the feeding tube. How long in general do
              > > they leave one in
              > > after the child is taking all nutrition and meds
              > by
              > > mouth?
              > >
              > > YaYa X5
              > >
              > > Joanna <><<
              > > Psalm113v9@...
              > >
              > >
              >
              >
              > __________________________________
              > Do you Yahoo!?
              > SBC Yahoo! DSL - Now only $29.95 per month!
              > http://sbc.yahoo.com
              >


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            • kdws66
              My name is Kim. I am the mother of three boys. My second son Aidan was born with down syndrome. My third son Carson is just two months old. First let me
              Message 6 of 14 , Jan 2, 2004
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                My name is Kim. I am the mother of three boys. My second son Aidan
                was born with down syndrome. My third son Carson is just two months
                old. First let me state that I know I am a a paranoid mother,
                probably more then most due to the events surrounding Aidan's birth!!
                My question regards my newborn. He has been dx with reflux. He has
                all the classic signs of reflux: he arches his back terribly, he
                spits up regualry, he is somewhat fussy, he clenches his fists, and
                sometimes just seems so dam uncomfortable. It is just that he gets
                so tight and I am concerned he may be hypertonia..( my son Aidan was
                hypOtonia). What do you all think...am I just being paranoid? or is
                this something I should be more concerned about..that this is MORE
                then reflux?
              • kdwspotts@aol.com
                My name is Kim. I am the mother of three boys. My second son Aidan was born with down syndrome. My third son Carson is just two months old. First let me state
                Message 7 of 14 , Jan 2, 2004
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                  My name is Kim. I am the mother of three boys. My second son Aidan
                  was born with down syndrome. My third son Carson is just two months
                  old. First let me state that I know I am a a paranoid mother,
                  probably more then most due to the events surrounding Aidan's birth!!
                  My question regards my newborn. He has been dx with reflux. He has
                  all the classic signs of reflux: he arches his back terribly, he
                  spits up regualry, he is somewhat fussy, he clenches his fists, and
                  sometimes just seems so dam uncomfortable. It is just that he gets
                  so tight and I am concerned he may be hypertonia..( my son Aidan was
                  hypOtonia). What do you all think...am I just being paranoid? or is
                  this something I should be more concerned about..that this is MORE
                  then reflux?





                  [Non-text portions of this message have been removed]
                • Monica Frankum
                  HI MY NAME IS MONICA AND I HAVE 2 DAUGHTERS AND MY FIRST ONE WAS DIAGNOSED WITH CEREBRAL PALSY AT 8 MONTHS OLD SHE DOES THE SAME THING AS YOUR CHILD DOES
                  Message 8 of 14 , Jan 2, 2004
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                    HI MY NAME IS MONICA AND I HAVE 2 DAUGHTERS AND MY
                    FIRST ONE WAS DIAGNOSED WITH CEREBRAL PALSY AT 8
                    MONTHS OLD SHE DOES THE SAME THING AS YOUR CHILD DOES
                    CLENCES HER FISTS,VERY FUSSY,SPITS UP,CAN'T HOLD HER
                    HEAD UP,CAN'T WALK AND HER THERAPIST SAID SHE HAD
                    REFLUX AND i HONESTLY DON'T THINK IT IS ANYTHING TO
                    WORRY ABOUT BUT WHAT IS YOUR MOTHER INSTINCT? FOLLOW
                    WHAT IT TELLS YOU AND GO FROM THERE. MY SECOND
                    DAUGHTER IS COMPLETLY FINE I WAS PARANOYED THINKING
                    SHE WOULD GET IT BUT I WAS WRONG AND I'M GLAD I WAS I
                    LOVE MY GIRLS VERY MUCH.SO I HOPE I ANSWERED YOUR QUESTION

                    =====
                    Cheryl203000

                    ______________________________________________________________________
                    Post your free ad now! http://personals.yahoo.ca
                  • gina moresco
                    kdwspotts@aol.com wrote:My name is Kim. I am the mother of three boys. My second son Aidan was born with down syndrome. My third son Carson is just two months
                    Message 9 of 14 , Jan 2, 2004
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                      kdwspotts@... wrote:My name is Kim. I am the mother of three boys. My second son Aidan
                      was born with down syndrome. My third son Carson is just two months
                      old. First let me state that I know I am a a paranoid mother,
                      probably more then most due to the events surrounding Aidan's birth!!
                      My question regards my newborn. He has been dx with reflux. He has
                      all the classic signs of reflux: he arches his back terribly, he
                      spits up regualry, he is somewhat fussy, he clenches his fists, and
                      sometimes just seems so dam uncomfortable. It is just that he gets
                      so tight and I am concerned he may be hypertonia..( my son Aidan was
                      hypOtonia). What do you all think...am I just being paranoid? or is
                      this something I should be more concerned about..that this is MORE
                      then reflux?





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



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                      Hi,

                      My name is Gina, I have a son who has mild cp. This may have nothing to do with anything other then, what he is eating. My son was a premie, and for many months we did not know he had cp. But, was spitting up alot, fussy alot, arching his back alot, tight stomach and looked very uncomfortable. We spent many nights up all night long with a crying baby and into the day with a very uncomfortable baby who looked like he was in pain. Many doctor visits and even one doctor told us it just was the fact that our baby of 2 months had a bad temper and deal with it , not in so many words. We then tried many formula's, nothing worked until, one good friend suggested Goats milk. We tried it, and in within a week our bad tempered baby, was cooing and happy. My mother had watched him since I had gone back to work during the day, she was one happy grandma!!! The doctor's do not know everything, we live with our children and know when something is wrong, not always is it a disorder, some
                      doctors like to put a diagnosis on everything. It could just be something as simple as his formula. . I know that you are worried, just rule everything else. Just a thought! Bye the way, this had nothing to do with his cp. We are blessed with our son Michael, who is a teen now. gina


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                    • kdws66
                      The only thing is Carson can hold his head up. He is very steady and controled with this too.
                      Message 10 of 14 , Jan 3, 2004
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                        The only thing is Carson can hold his head up. He is very steady and
                        controled with this too.


                        --- In cerebralpalsyclub@yahoogroups.com, Monica Frankum
                        <cheryl203000@y...> wrote:
                        >
                        > HI MY NAME IS MONICA AND I HAVE 2 DAUGHTERS AND MY
                        > FIRST ONE WAS DIAGNOSED WITH CEREBRAL PALSY AT 8
                        > MONTHS OLD SHE DOES THE SAME THING AS YOUR CHILD DOES
                        > CLENCES HER FISTS,VERY FUSSY,SPITS UP,CAN'T HOLD HER
                        > HEAD UP,CAN'T WALK AND HER THERAPIST SAID SHE HAD
                        > REFLUX AND i HONESTLY DON'T THINK IT IS ANYTHING TO
                        > WORRY ABOUT BUT WHAT IS YOUR MOTHER INSTINCT? FOLLOW
                        > WHAT IT TELLS YOU AND GO FROM THERE. MY SECOND
                        > DAUGHTER IS COMPLETLY FINE I WAS PARANOYED THINKING
                        > SHE WOULD GET IT BUT I WAS WRONG AND I'M GLAD I WAS I
                        > LOVE MY GIRLS VERY MUCH.SO I HOPE I ANSWERED YOUR QUESTION
                        >
                        > =====
                        > Cheryl203000
                        >
                        >
                        ______________________________________________________________________

                        > Post your free ad now! http://personals.yahoo.ca
                      • singing4joy4god
                        Hey Everyone, I have severe incontinence all my life,. I also have Cerebral Palsy .I have tried all the overactive bladder medicaine,and muscle relaxer none
                        Message 11 of 14 , Sep 1, 2005
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                          Hey Everyone,


                          I have severe incontinence all my
                          life,. I also have Cerebral Palsy .I have tried

                          all the overactive bladder medicaine,and muscle relaxer none
                          have helped. I
                          have been to three urologist and one neurologist for this all have
                          told me on
                          the first vist
                          without even knowing my history I need interstim
                          desprately, because they all had told me,
                          I'm the wose and yongest they seen. They When they would
                          take a blood
                          sample they told me I had to go to the hospital
                          because I had no
                          water in my system thats why I was so sick and
                          that's why everything
                          slowing was shutting down on me cause I never drank
                          water. I told the
                          doctor I couldn't because with one glass of water I
                          urinate 40 plus
                          times every 2 secs literally he told me it was
                          either that or your
                          gonna die. Well I started drinking my glasses of
                          water on the
                          toilet , sleeping on the toilet too, but my body
                          would regret the
                          water I could not drink more than one glass.
                          That's where I'm at
                          today I am slowing off slowly, but my doctors don't think it's the
                          Cerebral Palsy that doing because they told me other people with
                          Cerebral Palsy don't go as much as you and they are able to catherize
                          and you can't so until I get more test done I will just say I have
                          severe overactive bladder. Anyways my question is sometimes when
                          muscle relaxer don't work they impant the Bacffun pulmp I know it's
                          use not approved for the bladder it's use to relieve spacity in the
                          body, but if anyone here has gotten it has it help you when your
                          bladder problem? Is interstim kinda the same thing just that
                          interstem just involves the bladder? If anyone knows please let me
                          know thanks.

                          Michelle 0:)
                        • Mary Fox
                          Michelle, You poor thing!!!! I had incontinence for two weeks after my daughter was born and it nearly drove me nuts! My first urologist was worthless, but I
                          Message 12 of 14 , Sep 2, 2005
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                            Michelle,
                            You poor thing!!!! I had incontinence for two weeks after my daughter
                            was born and it nearly drove me nuts! My first urologist was worthless,
                            but I consulted a second one who helped (my issue was a simple fix,
                            though) Perhaps you need to keep looking until you find the right
                            doctor, even if it means taking a flight to a different city! Maybe
                            someone else on site can recommend a gifted urologist...

                            -Mary

                            singing4joy4god wrote:
                            > Hey Everyone,
                            >
                            >
                            > I have severe incontinence all my
                            > life,. I also have Cerebral Palsy .I have tried
                            >
                            >
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