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Re: [CEREBRAL PALSY CLUB] bettieblue2001

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  • jenn bartimus
    Bettie Hiya I will agree with you on some level that parents of any kids have it tough but I had Sam first so having the normal typical child second made me
    Message 1 of 19 , Aug 26, 2002
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      Bettie
      Hiya
      I will agree with you on some level that parents of any kids have it tough but I had Sam first so having the normal typical child second made me what him to grow up fast.. Now my 7 year old acts 3 or even 4 years older than he is and sometimes acts as an adult would.. He has his moments and he is hyperactive...
      Sam started seeing therapist for speech, and physical at the age of 1 or even before.. The parents as Teachers lady that came at the time to see and visit.. Its a program for kids under the age of 3.. She was not rolling over when she was supposed to.. She hardly started talking until she was about 3... Same with walking... The nuerologist never did suggest anything but a developmental delay and siezure disorder. He was a dumb doc though.. I found a better one and hopefully when we go to him in October he will be able to answer our questions a little more than the last...
      Sam had a lot of those siezures where she would just daze off but the one that made me realize she was having them at all made her shake so bad that even I was in shock when it happened.. Here we have a 15 month old in her walker still cause she cant walk and she is shaking so bad that she throws up all over the place.. I didnt know what to do and to have a doc with no personality.. was worse. She is still on meds for them only because the last time that I tried taking her off the meds she started having them again.. She takes pills now with no problem its the capsules that she hates. Not sure about where the docs are putting her at but according to the schools who did her IEP this year just before summer Sam is at the level anywhere from 1 year to 3 on most things. and shes 8.
      I do thank god. I probably wouldnt if my mother hadnt been there for me when she started having these problems.. I had no Idea what to do and my ex was so drugged out that I wasnt asking his advice on anything.. her first meds that she got he tried to steal from me after I moved out of his house.
      Im here most of the time thanx for listening.. Im in Missouri
      Jenn
      bettieblue2001 wrote:hi jenn!
      dont feel bad - i dont think parents of any kids have it very easy!! lol i think this must be a parenting rule or something!! hahaha!!!
      welcome to the group - and venting is a great thing to do - i do it often, and it always helps me see things clearer after i do!! my daughter is 2 and a bit, with quad cp. she had epilspy until she was 1 and a half, they were absences tho - she just drifted off somewhere - but she seems to have grown out of them, and hasnt had medication since christmas, which is great - getting that tegretol down her throat wasnt much fun! lol what do the doctors put sams speech down to? have they diagnosed anything? in our experience they were not very keen to give us a diagnosis - i think we said cerebral palsy before they did! not that i ever pushed them to tell me - i just wanted to know about her health, that she would be
      healthy - the rest we can work out as we go!! and we see a great group of therapists at our cerebral palsy association, and she is making great progress!! so its all good!! patitence is i think the
      biggest thing ive learnt, and thank god, coz its needed!!
      take care jenn!
      tania
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    • bettieblue2001
      ... it tough but I had Sam first so having the normal typical child second made me what him to grow up fast.. Now my 7 year old acts 3 or even 4 years older
      Message 2 of 19 , Aug 26, 2002
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        --- In cerebralpalsyclub@y..., jenn bartimus <twbart38@y...> wrote:
        >
        > Bettie
        > Hiya
        > I will agree with you on some level that parents of any kids have
        it tough but I had Sam first so having the normal typical child
        second made me what him to grow up fast.. Now my 7 year old acts 3 or
        even 4 years older than he is and sometimes acts as an adult would..
        He has his moments and he is hyperactive...
        > Sam started seeing therapist for speech, and physical at the age of
        1 or even before.. The parents as Teachers lady that came at the time
        to see and visit.. Its a program for kids under the age of 3.. She
        was not rolling over when she was supposed to.. She hardly started
        talking until she was about 3... Same with walking... The nuerologist
        never did suggest anything but a developmental delay and siezure
        disorder. He was a dumb doc though.. I found a better one and
        hopefully when we go to him in October he will be able to answer our
        questions a little more than the last...
        > Sam had a lot of those siezures where she would just daze off but
        the one that made me realize she was having them at all made her
        shake so bad that even I was in shock when it happened.. Here we have
        a 15 month old in her walker still cause she cant walk and she is
        shaking so bad that she throws up all over the place.. I didnt know
        what to do and to have a doc with no personality.. was worse. She is
        still on meds for them only because the last time that I tried taking
        her off the meds she started having them again.. She takes pills now
        with no problem its the capsules that she hates. Not sure about
        where the docs are putting her at but according to the schools who
        did her IEP this year just before summer Sam is at the level anywhere
        from 1 year to 3 on most things. and shes 8.
        > I do thank god. I probably wouldnt if my mother hadnt been there
        for me when she started having these problems.. I had no Idea what to
        do and my ex was so drugged out that I wasnt asking his advice on
        anything.. her first meds that she got he tried to steal from me
        after I moved out of his house.
        > Im here most of the time thanx for listening.. Im in Missouri
        > Jenn

        hi again jenn!
        sounds like u guys have had it hard with ur doc. i think im getting
        less time for them as the time goes on - unless its the ones like
        ortho that have alot of experience with cp. i would have missed
        lisas seizers too, luckily a physio picked them up when she was
        really young and we got into neuro really quickly. mums r great
        arent they! id be lost without mine i think! shes such a support,
        always positive thinking. i remember the term "global developmental
        delay" being used a bit when lisa was younger - it seemed like a
        silly term that could mean anything!! lol when the term cp came up
        - i was happy, at least we had an idea of where we were heading! im
        in perth, in western austraila, quite far from u unfortunately!!
        have a really great day over there!!!
        tania
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      • Shannon
        I have a beautiful 12-year old daughter who is TMI and has mild CP. We just moved from a large city to a small town and finding fellowship with other parents
        Message 3 of 19 , Sep 28, 2002
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          I have a beautiful 12-year old daughter who is TMI and has mild CP. We just moved from a large city to a small town and finding fellowship with other parents of disabled children is proving difficult. We are also considering a PPI program for our 5-year old who may be EI (who else on here hates the label game?).

          The special ed program is a good one, but we are new to the area and the county is sparsely populated with the kids in Katie's class being spread out throughout the school district.

          Hope to find much needed support here!

          In Him, Shannon


          "...and God shall wipe every tear from their eyes." Rev 7:17


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        • Amy
          Hello, I just joined this group and Im so happy that I found a support group..My Daughter Alexis is 3 with Cerebral Palsy..She doesn t wat or talk, and can t
          Message 4 of 19 , Jul 29 11:09 PM
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            Hello,
            I just joined this group and Im so happy that I found a support
            group..My Daughter Alexis is 3 with Cerebral Palsy..She doesn't wat
            or talk, and can't see, also she has seriuor disorder. But she is a
            blessing from God! Her CP was caused from a rare brain infection that
            they never found the couse of, they think its becasue my water broke
            the day before I had her, I want to the hopital but I wasn't haveing
            contrations so they sent me home.I ended up haveiong her the next day.
            Im so thankful for Alexis!She is a happy kid always smiling. I can't
            wait to get to know you all!
            Amy
          • debra Marasco-McNulty
            Amy, My son Jason is 26 yrs old now and I feel the same way. Though my life has taken different turns from what I thought it would and as a single mom with 2
            Message 5 of 19 , Jul 30 9:00 AM
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              Amy,

              My son Jason is 26 yrs old now and I feel the same
              way. Though my life has taken different turns from
              what I thought it would and as a single mom with 2
              small children (Jason's brother is 13 mos. older than
              Jason) I found more doors open than closed. Each
              learning situation made us stronger and we were always
              blessed with contacts and friends at every appropriate
              time. People come to me now years later and tell me
              how Jason has blessed their life. He is spastic
              quadraplegic and has difficulty forming our words, he
              is beginning to come up with HI, I call it Jason talk
              and it is very expressive. Like a mom that knows her
              baby's cry and what it means.

              I have a job that I didn't know would exist, I have an
              AA degree and am gradually working toward a BA, but
              that is not high on my priority because I am finding
              so many opportunities for learning that I would not
              find at a school. I've learned to think
              out-of-the-box in order to make our lives work; and it
              has benefited others.

              He is unable to walk or sit up. Has had several
              surgaries, mainly with the thought of making him
              comfortable and enhanceing his quality of life.

              Like you, I am blessed by Jason's smile which can
              light up a room. There is a book out that I am
              looking for a copy of titled "She smiles to say yes",
              About a woman unable to communicate, and through the
              observance and work of careproviders etc., writes a
              book, lives in a supportive living arrangement with
              her husband. Please check into assistive
              communication devices for your daughter. I have
              started late with Jason, because alot of it did not
              exist when he was young. But we're working to catch
              up.

              God has blessed us with physical angels that we can
              see, feel, communicate with, and love.

              Say HI to Alexis for me,

              Debra M-Mc in Paso Robles California

              --- Amy <onefish768@...> wrote:
              > Hello,
              > I just joined this group and Im so happy that I
              > found a support
              > group..My Daughter Alexis is 3 with Cerebral
              > Palsy..She doesn't wat
              > or talk, and can't see, also she has seriuor
              > disorder. But she is a
              > blessing from God! Her CP was caused from a rare
              > brain infection that
              > they never found the couse of, they think its
              > becasue my water broke
              > the day before I had her, I want to the hopital but
              > I wasn't haveing
              > contrations so they sent me home.I ended up haveiong
              > her the next day.
              > Im so thankful for Alexis!She is a happy kid always
              > smiling. I can't
              > wait to get to know you all!
              > Amy
              >
              >


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            • Bab006@aol.com
              I just joined to learn more about CP and treatments. I am a developmental specialist for WV Birth to Three. I am currently looking for some issues that are
              Message 6 of 19 , Oct 19, 2003
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                I just joined to learn more about CP and treatments. I am a developmental
                specialist for WV Birth to Three. I am currently looking for some issues that
                are usually related to CP.... cortical vision impairment. I work with several
                infants and toddlers that have CP and CVI and I am always looking for more
                treatment strategies.

                Bridget A. Bailey
                WV
                Yahoo! Groups : BirthtoThreeSupport
                Please join if you are a parent or professional interested in networking with
                others in Early Intervention.

                Yahoo! Groups : Corticalvisionimpairments
                Please join if you are interesting in discussing CVI and issues with that
                diagnosis.


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              • mastdh02
                HELLO I AM NEW TO THE GROUP, I AM A SINGLE MOTHER OF A CHILD BORN WITH CP, I AM LOOKING TO SPEAK WITH ANY ONE EXPERIENCED ANY ORAL MEDS AND DIFFERENT TYPES OF
                Message 7 of 19 , Mar 24, 2005
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                  HELLO I AM NEW TO THE GROUP, I AM A SINGLE MOTHER OF A CHILD BORN
                  WITH CP, I AM LOOKING TO SPEAK WITH ANY ONE EXPERIENCED ANY ORAL MEDS
                  AND DIFFERENT TYPES OF THERAPY, MALISA
                • nroach125
                  Hi i am a mother of a 1 year old. and we are told that he may have cp.I was looking on the computer on some info about cp and I found this chat. I look foward
                  Message 8 of 19 , Nov 18, 2005
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                    Hi i am a mother of a 1 year old. and we are told that he may have
                    cp.I was looking on the computer on some info about cp and I found
                    this chat. I look foward to talking to all of you.
                  • Nisa
                    hi, My name is Nisa.I am mother of 17 mons old little princess.She has Cp,CVI. developmental delay.Feel free to ask question.Thank you Nisa nroach125
                    Message 9 of 19 , Nov 18, 2005
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                      hi,
                      My name is Nisa.I am mother of 17 mons old little princess.She has Cp,CVI. developmental delay.Feel free to ask question.Thank you
                      Nisa

                      nroach125 <nikiroach@...> wrote:
                      Hi i am a mother of a 1 year old. and we are told that he may have
                      cp.I was looking on the computer on some info about cp and I found
                      this chat. I look foward to talking to all of you.





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                    • staci woods
                      Welcom to our club. I have a son who is 2 and has CP. The people here are awesome. It is hard when you are waiting for a diagnoses. I know we suspected my son
                      Message 10 of 19 , Nov 18, 2005
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                        Welcom to our club. I have a son who is 2 and has CP. The people here are awesome. It is hard when you are waiting for a diagnoses. I know we suspected my son had it at 9 months but he wasn't diagnosed untill 16 months because it took that long to get in to the neurologist.

                        I'm here if you have questions or need to talk.
                        Staci

                        nroach125 <nikiroach@...> wrote:
                        Hi i am a mother of a 1 year old. and we are told that he may have
                        cp.I was looking on the computer on some info about cp and I found
                        this chat. I look foward to talking to all of you.





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                      • Suzanne
                        Hello. My name is Suzanne. My daughter, Daisy is almost 20 months and we got diagnosed at 1year that she has cp. Is your child rolling over yet, eating right,
                        Message 11 of 19 , Nov 19, 2005
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                          Hello. My name is Suzanne. My daughter, Daisy is almost 20 months and
                          we got diagnosed at 1year that she has cp. Is your child rolling over
                          yet, eating right, talking? I'm just trying to help you in any way
                          that I can. Let me know.


                          -- In cerebralpalsyclub@yahoogroups.com, "nroach125" <nikiroach@b...>
                          wrote:
                          >
                          > Hi i am a mother of a 1 year old. and we are told that he may have
                          > cp.I was looking on the computer on some info about cp and I found
                          > this chat. I look foward to talking to all of you.
                          >
                        • Peggy Loftis
                          Hello I have a step-daughter who is 12, has Cerebral Palsey, and is developmentally delayed. It s definitely rough with her at this age since mentally she s
                          Message 12 of 19 , Nov 19, 2005
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                            Hello
                            I have a step-daughter who is 12, has Cerebral Palsey, and is developmentally delayed. It's definitely rough with her at this age since mentally she's at a 2-3 year level but is smart at some things and we're going through what I see them as terrible 2's (attitude, tantrums). If you have questions ask.

                            Peggy

                            Nisa <nisa600@...> wrote:
                            hi,
                            My name is Nisa.I am mother of 17 mons old little princess.She has Cp,CVI. developmental delay.Feel free to ask question.Thank you
                            Nisa

                            nroach125 <nikiroach@...> wrote:
                            Hi i am a mother of a 1 year old. and we are told that he may have
                            cp.I was looking on the computer on some info about cp and I found
                            this chat. I look foward to talking to all of you.





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                          • SANDRA HUNT
                            Hi Group, Hope everyone is doing fine, we are doing pretty well, I wanted to know has anyone tried eeg neurofeedback on their child if yes, have you seen
                            Message 13 of 19 , Nov 27, 2005
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                              Hi Group,

                              Hope everyone is doing fine, we are doing pretty well, I wanted to know has anyone tried eeg neurofeedback on their child if yes, have you seen results or any improvements, I came across this website www.neuropathways.com and it sounded interesting, and I also came across a website www.and.ca they both sound interesting I will find out more about it, but thought maybe someone has come across it or tried it.

                              Take Care

                              Sandra





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                            • Michelle
                              Hi , my name is Michelle , I have a 14 year old Daughter , who has CP, seizures , bdp, scoliosis,and alot of other things. She was born at 25 weeks gestation.
                              Message 14 of 19 , Mar 23, 2006
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                                Hi , my name is Michelle , I have a 14 year old Daughter , who has CP,
                                seizures , bdp, scoliosis,and alot of other things. She was born at 25
                                weeks gestation. She is haveing alot of trouble since they put the hard
                                ware in her back . just like to have someone to talk to that has it
                                like me.


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                              • Louisa Makolski
                                http://www.stdr-tedl.com/hwork55.html [Non-text portions of this message have been removed]
                                Message 15 of 19 , Apr 22, 2013
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                                  http://www.stdr-tedl.com/hwork55.html

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