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  • huntersgift
    My name is Michelle, and I have a 4 year old son, Hunter, who has been diagnosised with hypotonia/Ataxic CP. This was the result of a myriad of symptoms and
    Message 1 of 12 , Mar 23, 2002
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      My name is Michelle, and I have a 4 year old son, Hunter, who has
      been diagnosised with hypotonia/Ataxic CP. This was the result of a
      myriad of symptoms and conditions including PVL and two other brain
      abnormalities. We are blessed, however, he is quite capable of
      walking, talking, and playing. He is the light that guides my path.

      I have also started a message board, in his honor, for those of us
      that share our life with a special child. Please feel free to come
      by visit.

      http://pub72.ezboard.com/bhuntersgift
    • dinarismom
      Hi, I am the mother of a 71/2 month old baby boy, Dinari, who had meningitis at 10days old. Although he has not been formally diagnosed with CP he has
      Message 2 of 12 , Feb 16 11:37 AM
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        Hi, I am the mother of a 71/2 month old baby boy, Dinari, who had
        meningitis at 10days old. Although he has not been formally
        diagnosed with CP he has significant developmental delays, seizures,
        feeding tube, therapy (OT, PT) and a host of doctor visits. I just
        wanted to connect with some folks who know how I feel. I am
        particularly interested in hearing about athetoid CP. Dinari has low
        truncal tone and increased tone in his limbs (right more than left).
        My working diagnosis is that he may have mixed CP (spastic and
        athetoid). My doctors won't make a diagnosis until he is a year to
        18months. I want to prepare myself as best I can and make sure I not
        doing something I should be doing. Thanks in advance for your
        support.
      • Lizzy Haesbaert
        Hello, My name is Lizzy, 26, mother of Rafael (3) I live in Rio de Janeiro, Brazil. I sympathize with you and your situation, as I just experience something so
        Message 3 of 12 , Feb 16 1:17 PM
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          Hello,
          My name is Lizzy, 26, mother of Rafael (3) I live in Rio de Janeiro, Brazil.
          I sympathize with you and your situation, as I just experience something so similar. Rafael lacked oxygen at birth, and apparently everything was perfect....but I just knew that something was different ....he had a significant development delay and by the age of 1 he could not sit down on his own, thats when he was diagnosed with CP.
          Rafael is a perfect kid today (except for a little problem with the coordination of his legs) He goes to school and keeps up with the rest of the class, he has learned run and amazes me with the fighting spirit he has.
          What I have learned with this whole experience is that the best therapy you can give them is the input at home, exposing them to information, friends, and day to day challenges.( I can see clearly the difference of kids that are motivated at home and those who are not)
          My kid only started really improving when I stepped back (with my overprotected motherly instinct) and gave him the opportunity to try to discover things his way...and there were times when he was trying to walk, that he would fall down every other step he took, and it was very difficult for me to watch, as I wanted to help him, but it was the best thing for him.
          I also learned not to compare with other kids his age, as kids with CP often have their own schedule, and they eventually come around at their own paste.
          If there is any way I can help Pls. let me know!
          All the best to you and your little one!

          -Liz
          dinarismom <dinarismom@...> wrote:

          Hi, I am the mother of a 71/2 month old baby boy, Dinari, who had
          meningitis at 10days old. Although he has not been formally
          diagnosed with CP he has significant developmental delays, seizures,
          feeding tube, therapy (OT, PT) and a host of doctor visits. I just
          wanted to connect with some folks who know how I feel. I am
          particularly interested in hearing about athetoid CP. Dinari has low
          truncal tone and increased tone in his limbs (right more than left).
          My working diagnosis is that he may have mixed CP (spastic and
          athetoid). My doctors won't make a diagnosis until he is a year to
          18months. I want to prepare myself as best I can and make sure I not
          doing something I should be doing. Thanks in advance for your
          support.




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        • jimmymari
          Hi im a new mom of triplets born at 30 weeks, they are 13 months now (11 months adjusted age)they weighed in at 3.1,2.8 and 2.9, my youngest of the triplets
          Message 4 of 12 , Jul 18, 2005
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            Hi im a new mom of triplets born at 30 weeks, they are 13 months now
            (11 months adjusted age)they weighed in at 3.1,2.8 and 2.9, my
            youngest of the triplets Jimari was just diagnosed with mild cerebral
            palsy, she has alot of tone in her legs, it is so difficult for me to
            see her struggle so much, she is such a beutiful girl she loves to
            smile and laugh, the others are starting to walk and have been
            crawling for months and just love playing, but Jimari still cant sit
            without assistance and crawls in her own way she always keeps her legs
            extended and does not use her left arm at all when she crawls and she
            prefers to have her hands fisted at all times, she has been getting Pt
            for about 4 months she also receives OT,speech therapy, special ed,
            and feeding therapy, she is going for her first mri in about 1 week ,
            is there anyone out there that can explain (mild cerebral palsy) i
            just need someone who might be going through or has experienced what i
            am,
          • Mary Fox
            It sounds like you have your hands full with triplets! As far as the mild cerebral palsy label, I was told that it varies from one doctor to the next.
            Message 5 of 12 , Jul 18, 2005
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              It sounds like you have your hands full with triplets! As far as the
              "mild cerebral palsy" label, I was told that it varies from one doctor
              to the next. Cerebral palsy is an official diagnosis, but every child
              is different and is affected differently. One person described it as a
              "snowflake" diagnosis because no two children are exactly alike. The
              "mild" part is a judgement call...there isn't an official standard for
              mild, moderate or severe. We were told our child had mild cerebral
              palsy, yet he is 20 months old now and cannot sit independently. That
              seems like it should be at least moderate to me! Perhaps someone else
              can share what they know on this topic...

              -Mary
              Mom to Phillip 20 mos--hypotonic CP, BPD, Molly 3 and Michael 6

              jimmymari wrote:
              > Hi im a new mom of triplets born at 30 weeks, they are 13 months now
              > (11 months adjusted age)they weighed in at 3.1,2.8 and 2.9, my
              > youngest of the triplets Jimari was just diagnosed with mild cerebral
              > palsy, she has alot of tone in her legs, it is so difficult for me to
              > see her struggle so much, she is such a beutiful girl she loves to
              > smile and laugh, the others are starting to walk and have been
              > crawling for months and just love playing, but Jimari still cant sit
              > without assistance and crawls in her own way she always keeps her legs
              > extended and does not use her left arm at all when she crawls and she
              > prefers to have her hands fisted at all times, she has been getting Pt
              > for about 4 months she also receives OT,speech therapy, special ed,
              > and feeding therapy, she is going for her first mri in about 1 week ,
              > is there anyone out there that can explain (mild cerebral palsy) i
              > just need someone who might be going through or has experienced what i
              > am,
              >
              >
              >
              > ------------------------------------------------------------------------
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              > <http://groups.yahoo.com/group/cerebralpalsyclub>" on the web.
              >
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              > Service <http://docs.yahoo.com/info/terms/>.
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            • staci woods
              Hi everyone, I think the level of cerebral palsy might be hard to determine when the child is really young. I read this somewhere. Mild Cp is when the need
              Message 6 of 12 , Jul 20, 2005
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                Hi everyone,
                I think the level of cerebral palsy might be hard to determine when the child is really young. I read this somewhere. Mild Cp is when the need little to no assistance in being amblitory and in life skills. Moderate I think they need crutches or wheel chairs some of the time. Severe I think would be they need help with daily living, and need a wheel chair. But I don't think there is an exact diagram to go by. I was told my sons Cp is mild, but he walks with braces and has spasticity in his legs as well as a little throughout his body. His fine motor skills are ok and he talks very well. His diagnoses is spastic qaud type CP. He can sit up but it is a strech for him so he tries to w-sit or lean on someone instead. He is 2 and a half.
                Staci Mom of Hunter 2 Cp and Zoe.

                Mary Fox <mary.fox@...> wrote:
                It sounds like you have your hands full with triplets! As far as the
                "mild cerebral palsy" label, I was told that it varies from one doctor
                to the next. Cerebral palsy is an official diagnosis, but every child
                is different and is affected differently. One person described it as a
                "snowflake" diagnosis because no two children are exactly alike. The
                "mild" part is a judgement call...there isn't an official standard for
                mild, moderate or severe. We were told our child had mild cerebral
                palsy, yet he is 20 months old now and cannot sit independently. That
                seems like it should be at least moderate to me! Perhaps someone else
                can share what they know on this topic...

                -Mary
                Mom to Phillip 20 mos--hypotonic CP, BPD, Molly 3 and Michael 6

                jimmymari wrote:
                > Hi im a new mom of triplets born at 30 weeks, they are 13 months now
                > (11 months adjusted age)they weighed in at 3.1,2.8 and 2.9, my
                > youngest of the triplets Jimari was just diagnosed with mild cerebral
                > palsy, she has alot of tone in her legs, it is so difficult for me to
                > see her struggle so much, she is such a beutiful girl she loves to
                > smile and laugh, the others are starting to walk and have been
                > crawling for months and just love playing, but Jimari still cant sit
                > without assistance and crawls in her own way she always keeps her legs
                > extended and does not use her left arm at all when she crawls and she
                > prefers to have her hands fisted at all times, she has been getting Pt
                > for about 4 months she also receives OT,speech therapy, special ed,
                > and feeding therapy, she is going for her first mri in about 1 week ,
                > is there anyone out there that can explain (mild cerebral palsy) i
                > just need someone who might be going through or has experienced what i
                > am,
                >
                >
                >
                > ------------------------------------------------------------------------
                > YAHOO! GROUPS LINKS
                >
                > * Visit your group "cerebralpalsyclub
                > <http://groups.yahoo.com/group/cerebralpalsyclub>" on the web.
                >
                > * To unsubscribe from this group, send an email to:
                > cerebralpalsyclub-unsubscribe@yahoogroups.com
                > <mailto:cerebralpalsyclub-unsubscribe@yahoogroups.com?subject=Unsubscribe>
                >
                > * Your use of Yahoo! Groups is subject to the Yahoo! Terms of
                > Service <http://docs.yahoo.com/info/terms/>.
                >
                >
                > ------------------------------------------------------------------------
                >


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              • tilligus
                My future stepson has CP and I am just trying to learn as much as I can. He is 23 and having a hard time accepting his limitations right now. We are trying
                Message 7 of 12 , Dec 22, 2005
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                  My future stepson has CP and I am just trying to learn as much as I
                  can. He is 23 and having a hard time accepting his limitations right
                  now. We are trying to find him a job or an organization that could
                  help train him for a job that would be within his abilities. Any help
                  would be much appreciated.
                • Debra Marasco-McNulty
                  Where do you live? My son is 29 years old, but he s spastic quadraplegic, so I guess he feels he is the way he is. But he does go to day program every day.
                  Message 8 of 12 , Dec 22, 2005
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                    Where do you live?

                    My son is 29 years old, but he's spastic quadraplegic, so I guess he feels he is the way he is. But he does go to day program every day. There are day/work programs also.

                    Debra M-Mc

                    tilligus <tilligus@...> wrote:
                    My future stepson has CP and I am just trying to learn as much as I
                    can. He is 23 and having a hard time accepting his limitations right
                    now. We are trying to find him a job or an organization that could
                    help train him for a job that would be within his abilities. Any help
                    would be much appreciated.






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                  • itsjim715
                    ... Hi, I m new to the group as well. Although I don t have a child with CP, my background is in working with developmental disabilities. Honestly, I was
                    Message 9 of 12 , Jan 3, 2006
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                      --- In cerebralpalsyclub@yahoogroups.com, "tilligus" <tilligus@y...>
                      wrote:
                      >
                      > My future stepson has CP and I am just trying to learn as much as I
                      > can. He is 23 and having a hard time accepting his limitations right
                      > now. We are trying to find him a job or an organization that could
                      > help train him for a job that would be within his abilities. Any help
                      > would be much appreciated.
                      >
                      Hi,
                      I'm new to the group as well. Although I don't have a child with CP,
                      my background is in working with developmental disabilities.
                      Honestly, I was going to post a link to some research that I'm
                      conducting for my Ph.D, but it doesn't seem appropriate to do so on
                      this discussion board. On that note, let me see if I can maybe help
                      brainstorm some ideas about your future step sone and working.

                      Anyhow, I'm wondering what state you live in. Depending on the state
                      (I believe it's a national program with block funded grants to each
                      individual state) your future step son may be qualified for job
                      training and accomodations through vocational rehabilitation services.
                      The only catch, which I'm certain that many of the parents on this
                      site will tell you, is that many of these organizations tend to be low
                      on staff and overwhelmed. This is especially true since
                      rehabilitation services was moved from the department of education to
                      department of human services-but that's a different story. Basically,
                      the end product is that you and your son may have to be pretty
                      directive in what you would like from the agency, initiate the
                      contact, and continue to follow up with them.

                      I'm giving you vague ideas, and it's going to really depend on the
                      state you live in and how much your son can do for himself. Some
                      states have medicaid waiver programs, which will provide home based
                      services to help people live more independently. However, that
                      depends on the state. Many states have capped this service due to
                      limited budgets, although I think a few (like Arkansas and Tennessee)
                      have reopened their programs to varying degrees. Still, another
                      option or starting point may include contacting a local disability
                      support/advocacy group to see what is available. Good luck.
                    • cbbunnies1995
                      Hi, Just wanted to say Hi and let you know about me. I am a parent but it is me that has CP not my kid s . I am 44 and have had CP since birth. I am looking
                      Message 10 of 12 , Jul 13, 2007
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                        Hi,
                        Just wanted to say Hi and let you know about me. I am a parent but it
                        is me that has CP not my kid's . I am 44 and have had CP since birth. I
                        am looking for more info myself about CP . I have spastic CP from my
                        hip's down. I had surgery on my leg's at 18 month's and 12 years old .
                        I am able to walk and had worked in retail for 20 years but 2 years
                        ago i hurt my knee and was told that i had degenerative arthritis in my
                        knee's and in my ankles but i had a doctor tell me that he think's that
                        the CP is active again?? has anyone herd of this happening? I have been
                        out of work for 2 years now because it is harder for me to get around
                        and being in pain.
                        any info would really help.
                        Thanks,
                        Cecil
                      • Debra Marasco-McNulty
                        It seems to me that CP is a condition that you have or you don t. Since you have had the dx since birth, it would be a continueing condition, not something
                        Message 11 of 12 , Jul 13, 2007
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                          It seems to me that CP is a condition that you have or you don't. Since you have had the dx since birth, it would be a continueing condition, not something that switches on and off. Since you are 44, there are conditions that we naturally get as we age, these could be moreso with the CP, but I would approach the conditions in themself keeping in mind the CP part. My husband, no CP but Y chromosome problem (get it, ha ha) and his son age 35, has degenerative disk disease, the doctor said that this condition is as common as the common cold. It is monitored and then evaluated for different treatments. Several of my relatives and friends, again no CP, have be dx'd with arthitis of the knees and hips. I don't know of a connection between CP and arthitis exept that someone could have both. There is a magazine called 'New Mobility' that is primarily for adults with mobility issues, via disease or injury. They do have a website and maybe you could post this question with
                          them.

                          Debra M-Mc, mom of Jason, 30 yrs, spastic quad CP

                          cbbunnies1995 <cbbunnies1995@...> wrote:
                          Hi,
                          Just wanted to say Hi and let you know about me. I am a parent but it
                          is me that has CP not my kid's . I am 44 and have had CP since birth. I
                          am looking for more info myself about CP . I have spastic CP from my
                          hip's down. I had surgery on my leg's at 18 month's and 12 years old .
                          I am able to walk and had worked in retail for 20 years but 2 years
                          ago i hurt my knee and was told that i had degenerative arthritis in my
                          knee's and in my ankles but i had a doctor tell me that he think's that
                          the CP is active again?? has anyone herd of this happening? I have been
                          out of work for 2 years now because it is harder for me to get around
                          and being in pain.
                          any info would really help.
                          Thanks,
                          Cecil






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