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If I can help.........

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  • joynkathy <joynkathy@yahoo.com>
    To anyone interested..... I was the parent of a child with Myotubular Myopathy. My son Bill, was born in 1977 and lived until 1997. If I can be of any
    Message 1 of 11 , Jan 2, 2003
    • 0 Attachment
      To anyone interested.....
      I was the parent of a child with Myotubular Myopathy. My son Bill,
      was born in 1977 and lived until 1997.
      If I can be of any assistance to anyone seeking information,
      suggestions or support, please feel free to email me.

      Sincerely,
      Kathy M.
    • Patricia G
      hi Kathy,My name is Patricia and I have a son who is 7 and has Myopathy. He can walk but cant jump,run and has trouble getting up and down,he gets tired
      Message 2 of 11 , Jan 3, 2003
      • 0 Attachment

        hi Kathy,My name is Patricia and I have a son who is 7 and has Myopathy.

        He can walk but cant jump,run and has trouble getting up and down,he gets tired easily.He has pneumonia alot and is in and out of the hospital.

        I worry about him alot cause we dont know the outcome of this cause the doctors dont know which Myopathy he has.

        Any advice you can give me,I would be much thankful.

        Patricia

         "joynkathy <joynkathy@...>" <joynkathy@...> wrote:

        To anyone interested.....
        I was the parent of a child with Myotubular Myopathy.  My son Bill,
        was born in 1977 and lived until 1997.
        If I can be of any assistance to anyone seeking information,
        suggestions or support, please feel free to email me.

        Sincerely,
        Kathy M.




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      • robert.shapiro@JPMchase.com
        Hi Patricia and Kathy, We have a son who has x-linked myotubular myopathy. His name is Jay Jay and he is 5. He is very happy and smart but very weak. He is
        Message 3 of 11 , Jan 6, 2003
        • 0 Attachment
          Hi Patricia and Kathy,
          We have a son who has x-linked myotubular myopathy. His name is Jay
          Jay and he is 5. He is very happy and smart but very weak. He is in
          school but is absent quite often because when he has a cold we keep him
          home and it takes him a long time to recover. The definitive test for
          Myotubular myopathy is a muscle biopsy. Dr. Gail Herman also can be very
          helpful for this. If you contact the MYOTUBULAR RESOURCE GROUP
          (www.mtmrg.org) they will tell you much more. My son had a Pneumo vaccine
          last year along with flu shots each year. He hasn't gotten seriously ill
          this year. He is probably weaker then your son as he can not stand or walk
          on his own. He has a trach and a Mic-Key (g-tube) button. Kathy - Did
          your son have X-linked Myotubular myopathy or the Autosomal type? I
          don't know of any boys who are over twelve. I am very interested in your
          experiences.
          Thanks,


          Bob and Sherry





          Patricia G
          <itspatricia@ To: Myotubular_Myopathy@yahoogroups.com
          yahoo.com> cc:
          Subject: Re: [Myotubular_Myopathy] If I can help.........
          January 03,
          2003 05:00 PM
          Please
          respond to
          Myotubular_My
          opathy







          hi Kathy,My name is Patricia and I have a son who is 7 and has Myopathy.
          He can walk but cant jump,run and has trouble getting up and down,he gets
          tired easily.He has pneumonia alot and is in and out of the hospital.
          I worry about him alot cause we dont know the outcome of this cause the
          doctors dont know which Myopathy he has.
          Any advice you can give me,I would be much thankful.
          Patricia
          "joynkathy <joynkathy@...>" <joynkathy@...> wrote:To anyone
          interested.....
          I was the parent of a child with Myotubular Myopathy. My son Bill,
          was born in 1977 and lived until 1997.
          If I can be of any assistance to anyone seeking information,
          suggestions or support, please feel free to email me.

          Sincerely,
          Kathy M.



          Yahoo! Groups SponsorADVERTISEMENT

          To unsubscribe from this group, send an email to:
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          ---------------------------------
          Do you Yahoo!?
          Yahoo! Mail Plus - Powerful. Affordable. Sign up nowhi Kathy,My name is
          Patricia and I have a son who is 7 and has Myopathy.


          He can walk but cant jump,run and has trouble getting up and down,he gets
          tired easily.He has pneumonia alot and is in and out of the hospital.


          I worry about him alot cause we dont know the outcome of this cause the
          doctors dont know which Myopathy he has.


          Any advice you can give me,I would be much thankful.


          Patricia


          "joynkathy <joynkathy@...>" <joynkathy@...> wrote:
          To anyone interested.....
          I was the parent of a child with Myotubular Myopathy. My son Bill,
          was born in 1977 and lived until 1997.
          If I can be of any assistance to anyone seeking information,
          suggestions or support, please feel free to email me.

          Sincerely,
          Kathy M.




          To unsubscribe from this group, send an email to:
          Myotubular_Myopathy-unsubscribe@egroups.com



          Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



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        • Patricia G
          hi Bob and Sherry Thomas stayed sick alot in school and his doctor put him on homebound so his teacher comes here to the house to teach him,and we get the flu
          Message 4 of 11 , Jan 7, 2003
          • 0 Attachment

            hi Bob and Sherry

            Thomas stayed sick alot in school and his doctor put him on homebound so his teacher comes here to the house to teach him,and we get the flu shot every years,he still gets sick but not as bad

            Thomas has has a muscle biospy on his upper thight and so far all they have come up with it is a Myopathy*without a name*

            I put a call  to Shriners Hospital in Houston,they are suppose to be very good with muscle dieases and Scolosis(which we just found out he has)
            Patricia (Mom to Thomas,age7,myopathy)

             robert.shapiro@... wrote:


            Hi Patricia and Kathy,
                 We have a son who has x-linked myotubular myopathy.  His name is Jay
            Jay and he is 5.  He is very happy and smart but very weak.  He is in
            school but is absent quite often because when he has a cold we keep him
            home and it takes him a long time to recover.  The definitive test for
            Myotubular myopathy is a muscle biopsy.  Dr. Gail Herman also can be very
            helpful for this.  If you contact the MYOTUBULAR RESOURCE GROUP
            (www.mtmrg.org)  they will tell you much more.  My son had a Pneumo vaccine
            last year along with flu shots each year.  He hasn't gotten seriously ill
            this year.  He is probably weaker then your son as he can not stand or walk
            on his own.  He has a trach and a Mic-Key (g-tube) button.     Kathy - Did
            your son have X-linked Myotubular myopathy  or  the Autosomal  type?  I
            don't know of any boys who are over twelve.  I am very interested in your
            experiences.
            Thanks,


                      Bob and Sherry




                                                                                                                          
                                Patricia G                                                                                
                                <itspatricia@        To:     Myotubular_Myopathy@yahoogroups.com                          
                                yahoo.com>           cc:                                                                  
                                                     Subject:     Re: [Myotubular_Myopathy] If I can help.........        
                                January 03,                                                                               
                                2003 05:00 PM                                                                             
                                Please                                                                                    
                                respond to                                                                                
                                Myotubular_My                                                                             
                                opathy                                                                                    
                                                                                                                          
                                                                                                                          





            hi Kathy,My name is Patricia and I have a son who is 7 and has Myopathy.
            He can walk but cant jump,run and has trouble getting up and down,he gets
            tired easily.He has pneumonia alot and is in and out of the hospital.
            I worry about him alot cause we dont know the outcome of this cause the
            doctors dont know which Myopathy he has.
            Any advice you can give me,I would be much thankful.
            Patricia
            "joynkathy <joynkathy@...>" <joynkathy@...> wrote:To anyone
            interested.....
            I was the parent of a child with Myotubular Myopathy.  My son Bill,
            was born in 1977 and lived until 1997.
            If I can be of any assistance to anyone seeking information,
            suggestions or support, please feel free to email me.

            Sincerely,
            Kathy M.



            Yahoo! Groups SponsorADVERTISEMENT

            To unsubscribe from this group, send an email to:
            Myotubular_Myopathy-unsubscribe@egroups.com



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            ---------------------------------
            Do you Yahoo!?
            Yahoo! Mail Plus - Powerful. Affordable. Sign up nowhi Kathy,My name is
            Patricia and I have a son who is 7 and has Myopathy.


            He can walk but cant jump,run and has trouble getting up and down,he gets
            tired easily.He has pneumonia alot and is in and out of the hospital.


            I worry about him alot cause we dont know the outcome of this cause the
            doctors dont know which Myopathy he has.


            Any advice you can give me,I would be much thankful.


            Patricia


            "joynkathy <joynkathy@...>" <joynkathy@...> wrote:
            To anyone interested.....
            I was the parent of a child with Myotubular Myopathy.  My son Bill,
            was born in 1977 and lived until 1997.
            If I can be of any assistance to anyone seeking information,
            suggestions or support, please feel free to email me.

            Sincerely,
            Kathy M.




            To unsubscribe from this group, send an email to:
            Myotubular_Myopathy-unsubscribe@egroups.com



            Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



            Do you Yahoo!?
            Yahoo! Mail Plus - Powerful. Affordable. Sign up now
                                                               
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          • robert.shapiro@JPMchase.com
            Hi Patricia, It was good to hear from you. Our son may have to be homebound soon too. I hope to keep him in school to have the interaction with the other
            Message 5 of 11 , Jan 7, 2003
            • 0 Attachment
              Hi Patricia,
              It was good to hear from you. Our son may have to be homebound soon
              too. I hope to keep him in school to have the interaction with the other
              children but it is always a trade-off. Anyway Dr Gail Herman (a
              geneticist with Ohio State) is part of a group that isolated the Xlinked
              gene responsible for x-linked myotubular myopathy. There is a test that her
              group developed to determine if this disease is present. She will probably
              ask you about family history which is very relevant for the x-linked
              variety. In any case she will probably have very helpful information for
              you to get a proper diagnosis. her e-mail address is
              hermang@....

              I hope this helps
              Bob





              Patricia G
              <itspatricia@ To: Myotubular_Myopathy@yahoogroups.com
              yahoo.com> cc:
              Subject: Re: [Myotubular_Myopathy] If I can help.........
              January 07,
              2003 09:12 AM
              Please
              respond to
              Myotubular_My
              opathy






              hi Bob and Sherry


              Thomas stayed sick alot in school and his doctor put him on homebound so
              his teacher comes here to the house to teach him,and we get the flu shot
              every years,he still gets sick but not as bad


              Thomas has has a muscle biospy on his upper thight and so far all they have
              come up with it is a Myopathy*without a name*


              I put a call to Shriners Hospital in Houston,they are suppose to be very
              good with muscle dieases and Scolosis(which we just found out he has)
              Patricia (Mom to Thomas,age7,myopathy)


              robert.shapiro@... wrote:

              Hi Patricia and Kathy,
              We have a son who has x-linked myotubular myopathy. His name is Jay
              Jay and he is 5. He is very happy and smart but very weak. He is in
              school but is absent quite often because when he has a cold we keep him
              home and it takes him a long time to recover. The definitive test for
              Myotubular myopathy is a muscle biopsy. Dr. Gail Herman also can be very
              helpful for this. If you contact the MYOTUBULAR RESOURCE GROUP
              (www.mtmrg.org) they will tell you much more. My son had a Pneumo
              vaccine
              last year along with flu shots each year. He hasn't gotten seriously ill
              this year. He is probably weaker then your son as he can not stand or
              walk
              on his own. He has a trach and a Mic-Key (g-tube) button. Kathy - Did
              your son have X-linked Myotubular myopathy or the Autosomal type? I
              don't know of any boys who are over twelve. I am very interested in your
              experiences.
              Thanks,


              Bob and Sherry





              Patricia G

              <itspatricia@ To:
              Myotubular_Myopathy@yahoogroups.com
              yahoo.com> cc:

              Subject: Re:
              [Myotubular_Myopathy] If I can help.........
              January 03,

              2003 05:00 PM

              Please

              respond to

              Myotubular_My

              opathy








              hi Kathy,My name is Patricia and I have a son who is 7 and has Myopathy.
              He can walk but cant jump,run and has trouble getting up and down,he gets
              tired easily.He has pneumonia alot and is in and out of the hospital.
              I worry about him alot cause we dont know the outcome of this cause the
              doctors dont know which Myopathy he has.
              Any advice you can give me,I would be much thankful.
              Patricia
              "joynkathy <joynkathy@...>" <joynkathy@...> wrote:To anyone
              interested.....
              I was the parent of a child with Myotubular Myopathy. My son Bill,
              was born in 1977 and lived until 1997.
              If I can be of any assistance to anyone seeking information,
              suggestions or support, please feel free to email me.

              Sincerely,
              Kathy M.



              Yahoo! Groups SponsorADVERTISEMENT

              To unsubscribe from this group, send an email to:
              Myotubular_Myopathy-unsubscribe@egroups.com



              Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



              ---------------------------------
              Do you Yahoo!?
              Yahoo! Mail Plus - Powerful. Affordable. Sign up nowhi Kathy,My name is
              Patricia and I have a son who is 7 and has Myopathy.


              He can walk but cant jump,run and has trouble getting up and down,he gets
              tired easily.He has pneumonia alot and is in and out of the hospital.


              I worry about him alot cause we dont know the outcome of this cause the
              doctors dont know which Myopathy he has.


              Any advice you can give me,I would be much thankful.


              Patricia


              "joynkathy <joynkathy@...>" <joynkathy@...> wrote:
              To anyone interested.....
              I was the parent of a child with Myotubular Myopathy. My son Bill,
              was born in 1977 and lived until 1997.
              If I can be of any assistance to anyone seeking information,
              suggestions or support, please feel free to email me.

              Sincerely,
              Kathy M.




              To unsubscribe from this group, send an email to:
              Myotubular_Myopathy-unsubscribe@egroups.com



              Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



              Do you Yahoo!?
              Yahoo! Mail Plus - Powerful. Affordable. Sign up now

              Yahoo! Groups Sponsor




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            • robert.shapiro@JPMchase.com
              Hi Patricia, It was good to hear from you. Our son may have to be homebound soon too. I hope to keep him in school to have the interaction with the other
              Message 6 of 11 , Jan 7, 2003
              • 0 Attachment
                Hi Patricia,
                It was good to hear from you. Our son may have to be homebound soon
                too. I hope to keep him in school to have the interaction with the other
                children but it is always a trade-off. Anyway Dr Gail Herman (a
                geneticist with Ohio State) is part of a group that isolated the Xlinked
                gene responsible for x-linked myotubular myopathy. There is a test that her
                group developed to determine if this disease is present. She will probably
                ask you about family history which is very relevant for the x-linked
                variety. In any case she will probably have very helpful information for
                you to get a proper diagnosis. her e-mail address is
                hermang@...-state.edu. The previous address was no good.

                I hope this helps
                Bob





                Patricia G
                <itspatricia@ To: Myotubular_Myopathy@yahoogroups.com
                yahoo.com> cc:
                Subject: Re: [Myotubular_Myopathy] If I can help.........
                January 07,
                2003 09:12 AM
                Please
                respond to
                Myotubular_My
                opathy






                hi Bob and Sherry


                Thomas stayed sick alot in school and his doctor put him on homebound so
                his teacher comes here to the house to teach him,and we get the flu shot
                every years,he still gets sick but not as bad


                Thomas has has a muscle biospy on his upper thight and so far all they have
                come up with it is a Myopathy*without a name*


                I put a call to Shriners Hospital in Houston,they are suppose to be very
                good with muscle dieases and Scolosis(which we just found out he has)
                Patricia (Mom to Thomas,age7,myopathy)


                robert.shapiro@... wrote:

                Hi Patricia and Kathy,
                We have a son who has x-linked myotubular myopathy. His name is Jay
                Jay and he is 5. He is very happy and smart but very weak. He is in
                school but is absent quite often because when he has a cold we keep him
                home and it takes him a long time to recover. The definitive test for
                Myotubular myopathy is a muscle biopsy. Dr. Gail Herman also can be very
                helpful for this. If you contact the MYOTUBULAR RESOURCE GROUP
                (www.mtmrg.org) they will tell you much more. My son had a Pneumo
                vaccine
                last year along with flu shots each year. He hasn't gotten seriously ill
                this year. He is probably weaker then your son as he can not stand or
                walk
                on his own. He has a trach and a Mic-Key (g-tube) button. Kathy - Did
                your son have X-linked Myotubular myopathy or the Autosomal type? I
                don't know of any boys who are over twelve. I am very interested in your
                experiences.
                Thanks,


                Bob and Sherry





                Patricia G

                <itspatricia@ To:
                Myotubular_Myopathy@yahoogroups.com
                yahoo.com> cc:

                Subject: Re:
                [Myotubular_Myopathy] If I can help.........
                January 03,

                2003 05:00 PM

                Please

                respond to

                Myotubular_My

                opathy








                hi Kathy,My name is Patricia and I have a son who is 7 and has Myopathy.
                He can walk but cant jump,run and has trouble getting up and down,he gets
                tired easily.He has pneumonia alot and is in and out of the hospital.
                I worry about him alot cause we dont know the outcome of this cause the
                doctors dont know which Myopathy he has.
                Any advice you can give me,I would be much thankful.
                Patricia
                "joynkathy <joynkathy@...>" <joynkathy@...> wrote:To anyone
                interested.....
                I was the parent of a child with Myotubular Myopathy. My son Bill,
                was born in 1977 and lived until 1997.
                If I can be of any assistance to anyone seeking information,
                suggestions or support, please feel free to email me.

                Sincerely,
                Kathy M.



                Yahoo! Groups SponsorADVERTISEMENT

                To unsubscribe from this group, send an email to:
                Myotubular_Myopathy-unsubscribe@egroups.com



                Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



                ---------------------------------
                Do you Yahoo!?
                Yahoo! Mail Plus - Powerful. Affordable. Sign up nowhi Kathy,My name is
                Patricia and I have a son who is 7 and has Myopathy.


                He can walk but cant jump,run and has trouble getting up and down,he gets
                tired easily.He has pneumonia alot and is in and out of the hospital.


                I worry about him alot cause we dont know the outcome of this cause the
                doctors dont know which Myopathy he has.


                Any advice you can give me,I would be much thankful.


                Patricia


                "joynkathy <joynkathy@...>" <joynkathy@...> wrote:
                To anyone interested.....
                I was the parent of a child with Myotubular Myopathy. My son Bill,
                was born in 1977 and lived until 1997.
                If I can be of any assistance to anyone seeking information,
                suggestions or support, please feel free to email me.

                Sincerely,
                Kathy M.




                To unsubscribe from this group, send an email to:
                Myotubular_Myopathy-unsubscribe@egroups.com



                Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



                Do you Yahoo!?
                Yahoo! Mail Plus - Powerful. Affordable. Sign up now

                Yahoo! Groups Sponsor




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                To unsubscribe from this group, send an email to:
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              • Patricia G
                hi Bob we have done genitic testing...found nothing Thomas is adopted so we have no family history*sighs* As far as homebound,I know what you mean,I hate that
                Message 7 of 11 , Jan 7, 2003
                • 0 Attachment

                  hi Bob

                  we have done genitic testing...found nothing

                  Thomas is adopted so we have no family history*sighs*

                  As far as homebound,I know what you mean,I hate that Thomas dosent get the interacting with the other classmates but what we do,when we have to protect their health?Its hard.What state are you located in?We are in texas.

                  I will email her and see if she can offer some advice

                  thanks

                  Patricia

                   robert.shapiro@... wrote:


                  Hi Patricia,
                       It was good to hear from you.  Our son may have to be homebound soon
                  too.  I hope to keep him in school to have the interaction with the other
                  children but it is always a trade-off.   Anyway Dr Gail Herman (a
                  geneticist with Ohio State) is part of a group that isolated the Xlinked
                  gene responsible for x-linked myotubular myopathy. There is a test that her
                  group developed to determine if this disease is present.  She will probably
                  ask you about family history which is very relevant for the x-linked
                  variety.  In any case she will probably have very helpful information for
                  you to get a proper diagnosis. her e-mail address is
                  hermang@...-state.edu. The previous address was no good.

                  I hope this helps
                                 Bob




                                                                                                                                
                                      Patricia G                                                                                
                                      <itspatricia@        To:     Myotubular_Myopathy@yahoogroups.com                          
                                      yahoo.com>           cc:                                                                  
                                                           Subject:     Re: [Myotubular_Myopathy] If I can help.........        
                                      January 07,                                                                               
                                      2003 09:12 AM                                                                             
                                      Please                                                                                    
                                      respond to                                                                                
                                      Myotubular_My                                                                             
                                      opathy                                                                                    
                                                                                                                                
                                                                                                                                




                  hi Bob and Sherry


                  Thomas stayed sick alot in school and his doctor put him on homebound so
                  his teacher comes here to the house to teach him,and we get the flu shot
                  every years,he still gets sick but not as bad


                  Thomas has has a muscle biospy on his upper thight and so far all they have
                  come up with it is a Myopathy*without a name*


                  I put a call  to Shriners Hospital in Houston,they are suppose to be very
                  good with muscle dieases and Scolosis(which we just found out he has)
                  Patricia (Mom to Thomas,age7,myopathy)


                  robert.shapiro@... wrote:

                  Hi Patricia and Kathy,
                        We have a son who has x-linked myotubular myopathy.  His name is Jay
                  Jay and he is 5.  He is very happy and smart but very weak.  He is in
                  school but is absent quite often because when he has a cold we keep him
                  home and it takes him a long time to recover.  The definitive test for
                  Myotubular myopathy is a muscle biopsy.  Dr. Gail Herman also can be very
                  helpful for this.  If you contact the MYOTUBULAR RESOURCE GROUP
                  (www.mtmrg.org)  they will tell you much more.  My son had a Pneumo
                  vaccine
                  last year along with flu shots each year.  He hasn't gotten seriously ill
                  this year.  He is probably weaker then your son as he can not stand or
                  walk
                  on his own.  He has a trach and a Mic-Key (g-tube) button.     Kathy - Did
                  your son have X-linked Myotubular myopathy  or  the Autosomal  type?  I
                  don't know of any boys who are over twelve.  I am very interested in your
                  experiences.
                  Thanks,


                             Bob and Sherry





                                       Patricia G

                                       <itspatricia@        To:
                  Myotubular_Myopathy@yahoogroups.com
                                       yahoo.com>           cc:

                                                            Subject:     Re:
                  [Myotubular_Myopathy] If I can help.........
                                       January 03,

                                       2003 05:00 PM

                                       Please

                                       respond to

                                       Myotubular_My

                                       opathy








                  hi Kathy,My name is Patricia and I have a son who is 7 and has Myopathy.
                  He can walk but cant jump,run and has trouble getting up and down,he gets
                  tired easily.He has pneumonia alot and is in and out of the hospital.
                  I worry about him alot cause we dont know the outcome of this cause the
                  doctors dont know which Myopathy he has.
                  Any advice you can give me,I would be much thankful.
                  Patricia
                  "joynkathy <joynkathy@...>" <joynkathy@...> wrote:To anyone
                  interested.....
                  I was the parent of a child with Myotubular Myopathy.  My son Bill,
                  was born in 1977 and lived until 1997.
                  If I can be of any assistance to anyone seeking information,
                  suggestions or support, please feel free to email me.

                  Sincerely,
                  Kathy M.



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                  ---------------------------------
                  Do you Yahoo!?
                  Yahoo! Mail Plus - Powerful. Affordable. Sign up nowhi Kathy,My name is
                  Patricia and I have a son who is 7 and has Myopathy.


                  He can walk but cant jump,run and has trouble getting up and down,he gets
                  tired easily.He has pneumonia alot and is in and out of the hospital.


                  I worry about him alot cause we dont know the outcome of this cause the
                  doctors dont know which Myopathy he has.


                  Any advice you can give me,I would be much thankful.


                  Patricia


                  "joynkathy <joynkathy@...>" <joynkathy@...> wrote:
                  To anyone interested.....
                  I was the parent of a child with Myotubular Myopathy.  My son Bill,
                  was born in 1977 and lived until 1997.
                  If I can be of any assistance to anyone seeking information,
                  suggestions or support, please feel free to email me.

                  Sincerely,
                  Kathy M.




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                • robert.shapiro@JPMchase.com
                  HI again, We are in New Jersey but the Scoggins are in Texas also. John is 12 I think and has the x-linked Myotubular myopathy. Gary, Pam run the MTM org
                  Message 8 of 11 , Jan 7, 2003
                  • 0 Attachment
                    HI again,
                    We are in New Jersey but the "Scoggins" are in Texas also. John is 12
                    I think and has the x-linked Myotubular myopathy.
                    Gary, Pam run the MTM org group and have been extremely helpful to me in
                    the past. Try the web site http://www.mtmrg.org/. I believe that you can
                    contact them through the web site. Also you can read about John and Jay
                    Jay on this site.
                    Keep in touch. It is always good to talk to other families.
                    Bob





                    Patricia G
                    <itspatricia@ To: Myotubular_Myopathy@yahoogroups.com
                    yahoo.com> cc:
                    Subject: Re: [Myotubular_Myopathy] If I can help.........
                    January 07,
                    2003 02:18 PM
                    Please
                    respond to
                    Myotubular_My
                    opathy







                    hi Bob
                    we have done genitic testing...found nothing
                    Thomas is adopted so we have no family history*sighs*
                    As far as homebound,I know what you mean,I hate that Thomas dosent get the
                    interacting with the other classmates but what we do,when we have to
                    protect their health?Its hard.What state are you located in?We are in
                    texas.
                    I will email her and see if she can offer some advice
                    thanks
                    Patricia
                    robert.shapiro@... wrote:
                    Hi Patricia,
                    It was good to hear from you. Our son may have to be homebound soon
                    too. I hope to keep him in school to have the interaction with the other
                    children but it is always a trade-off. Anyway Dr Gail Herman (a
                    geneticist with Ohio State) is part of a group that isolated the Xlinked
                    gene responsible for x-linked myotubular myopathy. There is a test that her
                    group developed to determine if this disease is present. She will probably
                    ask you about family history which is very relevant for the x-linked
                    variety. In any case she will probably have very helpful information for
                    you to get a proper diagnosis. her e-mail address is
                    hermang@...-state.edu. The previous address was no good.

                    I hope this helps
                    Bob





                    Patricia G

                    <itspatricia@ To:
                    Myotubular_Myopathy@yahoogroups.com
                    yahoo.com> cc:

                    Subject: Re:
                    [Myotubular_Myopathy] If I can help.........
                    January 07,

                    2003 09:12 AM

                    Please

                    respond to

                    Myotubular_My

                    opathy







                    hi Bob and Sherry


                    Thomas stayed sick alot in school and his doctor put him on homebound so
                    his teacher comes here to the house to teach him,and we get the flu shot
                    every years,he still gets sick but not as bad


                    Thomas has has a muscle biospy on his upper thight and so far all they have
                    come up with it is a Myopathy*without a name*


                    I put a call to Shriners Hospital in Houston,they are suppose to be very
                    good with muscle dieases and Scolosis(which we just found out he has)
                    Patricia (Mom to Thomas,age7,myopathy)


                    robert.shapiro@... wrote:

                    Hi Patricia and Kathy,
                    We have a son who has x-linked myotubular myopathy. His name is Jay
                    Jay and he is 5. He is very happy and smart but very weak. He is in
                    school but is absent quite often because when he has a cold we keep him
                    home and it takes him a long time to recover. The definitive test for
                    Myotubular myopathy is a muscle biopsy. Dr. Gail Herman also can be very
                    helpful for this. If you contact the MYOTUBULAR RESOURCE GROUP
                    (www.mtmrg.org) they will tell you much more. My son had a Pneumo
                    vaccine
                    last year along with flu shots each year. He hasn't gotten seriously ill
                    this year. He is probably weaker then your son as he can not stand or
                    walk
                    on his own. He has a trach and a Mic-Key (g-tube) button. Kathy - Did
                    your son have X-linked Myotubular myopathy or the Autosomal type? I
                    don't know of any boys who are over twelve. I am very interested in your
                    experiences.
                    Thanks,


                    Bob and Sherry





                    Patricia G

                    <itspatricia@ To:
                    Myotubular_Myopathy@yahoogroups.com
                    yahoo.com> cc:

                    Subject: Re:
                    [Myotubular_Myopathy] If I can help.........
                    January 03,

                    2003 05:00 PM

                    Please

                    respond to

                    Myotubular_My

                    opathy








                    hi Kathy,My name is Patricia and I have a son who is 7 and has Myopathy.
                    He can walk but cant jump,run and has trouble getting up and down,he gets
                    tired easily.He has pneumonia alot and is in and out of the hospital.
                    I worry about him alot cause we dont know the outcome of this cause the
                    doctors dont know which Myopathy he has.
                    Any advice you can give me,I would be much thankful.
                    Patricia
                    "joynkathy <joynkathy@...>" <joynkathy@...> wrote:To anyone
                    interested.....
                    I was the parent of a child with Myotubular Myopathy. My son Bill,
                    was born in 1977 and lived until 1997.
                    If I can be of any assistance to anyone seeking information,
                    suggestions or support, please feel free to email me.

                    Sincerely,
                    Kathy M.



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                    To unsubscribe from this group, send an email to:
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                    ---------------------------------
                    Do you Yahoo!?
                    Yahoo! Mail Plus - Powerful. Affordable. Sign up nowhi Kathy,My name is
                    Patricia and I have a son who is 7 and has Myopathy.


                    He can walk but cant jump,run and has trouble getting up and down,he gets
                    tired easily.He has pneumonia alot and is in and out of the hospital.


                    I worry about him alot cause we dont know the outcome of this cause the
                    doctors dont know which Myopathy he has.


                    Any advice you can give me,I would be much thankful.


                    Patricia


                    "joynkathy <joynkathy@...>" <joynkathy@...> wrote:
                    To anyone interested.....
                    I was the parent of a child with Myotubular Myopathy. My son Bill,
                    was born in 1977 and lived until 1997.
                    If I can be of any assistance to anyone seeking information,
                    suggestions or support, please feel free to email me.

                    Sincerely,
                    Kathy M.




                    To unsubscribe from this group, send an email to:
                    Myotubular_Myopathy-unsubscribe@egroups.com



                    Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



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                    ---------------------------------
                    Do you Yahoo!?
                    Yahoo! Mail Plus - Powerful. Affordable. Sign up nowhi Bob


                    we have done genitic testing...found nothing


                    Thomas is adopted so we have no family history*sighs*


                    As far as homebound,I know what you mean,I hate that Thomas dosent get the
                    interacting with the other classmates but what we do,when we have to
                    protect their health?Its hard.What state are you located in?We are in
                    texas.


                    I will email her and see if she can offer some advice


                    thanks


                    Patricia


                    robert.shapiro@... wrote:

                    Hi Patricia,
                    It was good to hear from you. Our son may have to be homebound soon
                    too. I hope to keep him in school to have the interaction with the other
                    children but it is always a trade-off. Anyway Dr Gail Herman (a
                    geneticist with Ohio State) is part of a group that isolated the Xlinked
                    gene responsible for x-linked myotubular myopathy. There is a test that
                    her
                    group developed to determine if this disease is present. She will
                    probably
                    ask you about family history which is very relevant for the x-linked
                    variety. In any case she will probably have very helpful information for
                    you to get a proper diagnosis. her e-mail address is
                    hermang@...-state.edu. The previous address was no good.

                    I hope this helps
                    Bob





                    Patricia G

                    <itspatricia@ To:
                    Myotubular_Myopathy@yahoogroups.com
                    yahoo.com> cc:

                    Subject: Re:
                    [Myotubular_Myopathy] If I can help.........
                    January 07,

                    2003 09:12 AM

                    Please

                    respond to

                    Myotubular_My

                    opathy







                    hi Bob and Sherry


                    Thomas stayed sick alot in school and his doctor put him on homebound so
                    his teacher comes here to the house to teach him,and we get the flu shot
                    every years,he still gets sick but not as bad


                    Thomas has has a muscle biospy on his upper thight and so far all they
                    have
                    come up with it is a Myopathy*without a name*


                    I put a call to Shriners Hospital in Houston,they are suppose to be very
                    good with muscle dieases and Scolosis(which we just found out he has)
                    Patricia (Mom to Thomas,age7,myopathy)


                    robert.shapiro@... wrote:

                    Hi Patricia and Kathy,
                    We have a son who has x-linked myotubular myopathy. His name is Jay
                    Jay and he is 5. He is very happy and smart but very weak. He is in
                    school but is absent quite often because when he has a cold we keep him
                    home and it takes him a long time to recover. The definitive test for
                    Myotubular myopathy is a muscle biopsy. Dr. Gail Herman also can be very
                    helpful for this. If you contact the MYOTUBULAR RESOURCE GROUP
                    (www.mtmrg.org) they will tell you much more. My son had a Pneumo
                    vaccine
                    last year along with flu shots each year. He hasn't gotten seriously ill
                    this year. He is probably weaker then your son as he can not stand or
                    walk
                    on his own. He has a trach and a Mic-Key (g-tube) button. Kathy - Did
                    your son have X-linked Myotubular myopathy or the Autosomal type? I
                    don't know of any boys who are over twelve. I am very interested in your
                    experiences.
                    Thanks,


                    Bob and Sherry





                    Patricia G

                    <itspatricia@ To:
                    Myotubular_Myopathy@yahoogroups.com
                    yahoo.com> cc:

                    Subject: Re:
                    [Myotubular_Myopathy] If I can help.........
                    January 03,

                    2003 05:00 PM

                    Please

                    respond to

                    Myotubular_My

                    opathy








                    hi Kathy,My name is Patricia and I have a son who is 7 and has Myopathy.
                    He can walk but cant jump,run and has trouble getting up and down,he gets
                    tired easily.He has pneumonia alot and is in and out of the hospital.
                    I worry about him alot cause we dont know the outcome of this cause the
                    doctors dont know which Myopathy he has.
                    Any advice you can give me,I would be much thankful.
                    Patricia
                    "joynkathy <joynkathy@...>" <joynkathy@...> wrote:To anyone
                    interested.....
                    I was the parent of a child with Myotubular Myopathy. My son Bill,
                    was born in 1977 and lived until 1997.
                    If I can be of any assistance to anyone seeking information,
                    suggestions or support, please feel free to email me.

                    Sincerely,
                    Kathy M.



                    Yahoo! Groups SponsorADVERTISEMENT

                    To unsubscribe from this group, send an email to:
                    Myotubular_Myopathy-unsubscribe@egroups.com



                    Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



                    ---------------------------------
                    Do you Yahoo!?
                    Yahoo! Mail Plus - Powerful. Affordable. Sign up nowhi Kathy,My name is
                    Patricia and I have a son who is 7 and has Myopathy.


                    He can walk but cant jump,run and has trouble getting up and down,he gets
                    tired easily.He has pneumonia alot and is in and out of the hospital.


                    I worry about him alot cause we dont know the outcome of this cause the
                    doctors dont know which Myopathy he has.


                    Any advice you can give me,I would be much thankful.


                    Patricia


                    "joynkathy <joynkathy@...>" <joynkathy@...> wrote:
                    To anyone interested.....
                    I was the parent of a child with Myotubular Myopathy. My son Bill,
                    was born in 1977 and lived until 1997.
                    If I can be of any assistance to anyone seeking information,
                    suggestions or support, please feel free to email me.

                    Sincerely,
                    Kathy M.




                    To unsubscribe from this group, send an email to:
                    Myotubular_Myopathy-unsubscribe@egroups.com



                    Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



                    Do you Yahoo!?
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                  • connie guinn
                    Hi, Patricia! My name is Connie. I also have a son born with x-linked myotubular myopathy (I have one son, Elijah, who passed away in 2001 who had it, and I
                    Message 9 of 11 , Jan 29, 2003
                    • 0 Attachment
                      Hi, Patricia!
                      My name is Connie. I also have a son born with
                      x-linked myotubular myopathy (I have one son, Elijah,
                      who passed away in 2001 who had it, and I have another
                      son, Benjamin, who was born this past September).
                      Where in Texas are you located? I also live in
                      Texas- in the Houston area... close to the Scoggin
                      family (from the myotubular myopathy resource group)
                      which Mr. Shapiro spoke of. There is also another
                      family close to this area who have 2 living sons also
                      born with x-linked MTM. Small world! Since you are
                      already dealing with the Shriner's hospital (located
                      in the Texas Medical Center, have you considered going
                      to Texas Children's Hospital (also located in the
                      Texas Medical Center)? They are a really good place
                      to go- lots of experience with this myopathy. My son,
                      Benjamin, John Scoggin, and the two brothers from this
                      other area family all use Texas Children's Hospital
                      (use the same physicians, too). I hope you get some
                      results soon.
                      -Connie
                      --- Patricia G <itspatricia@...> wrote:
                      >
                      > hi Bob
                      > we have done genitic testing...found nothing
                      > Thomas is adopted so we have no family
                      > history*sighs*
                      > As far as homebound,I know what you mean,I hate that
                      > Thomas dosent get the interacting with the other
                      > classmates but what we do,when we have to protect
                      > their health?Its hard.What state are you located
                      > in?We are in texas.
                      > I will email her and see if she can offer some
                      > advice
                      > thanks
                      > Patricia
                      > robert.shapiro@... wrote:
                      > Hi Patricia,
                      > It was good to hear from you. Our son may have
                      > to be homebound soon
                      > too. I hope to keep him in school to have the
                      > interaction with the other
                      > children but it is always a trade-off. Anyway Dr
                      > Gail Herman (a
                      > geneticist with Ohio State) is part of a group that
                      > isolated the Xlinked
                      > gene responsible for x-linked myotubular myopathy.
                      > There is a test that her
                      > group developed to determine if this disease is
                      > present. She will probably
                      > ask you about family history which is very relevant
                      > for the x-linked
                      > variety. In any case she will probably have very
                      > helpful information for
                      > you to get a proper diagnosis. her e-mail address is
                      > hermang@...-state.edu. The previous
                      > address was no good.
                      >
                      > I hope this helps
                      > Bob
                      >
                      >
                      >
                      >
                      >
                      >
                      >
                      > Patricia G
                      >
                      >
                      > <itspatricia@ To:
                      > Myotubular_Myopathy@yahoogroups.com
                      >
                      > yahoo.com> cc:
                      >
                      >
                      > Subject:
                      > Re: [Myotubular_Myopathy] If I can help.........
                      >
                      > January 07,
                      >
                      >
                      > 2003 09:12 AM
                      >
                      >
                      > Please
                      >
                      >
                      > respond to
                      >
                      >
                      > Myotubular_My
                      >
                      >
                      > opathy
                      >
                      >
                      >
                      >
                      >
                      >
                      >
                      >
                      >
                      >
                      >
                      >
                      > hi Bob and Sherry
                      >
                      >
                      > Thomas stayed sick alot in school and his doctor put
                      > him on homebound so
                      > his teacher comes here to the house to teach him,and
                      > we get the flu shot
                      > every years,he still gets sick but not as bad
                      >
                      >
                      > Thomas has has a muscle biospy on his upper thight
                      > and so far all they have
                      > come up with it is a Myopathy*without a name*
                      >
                      >
                      > I put a call to Shriners Hospital in Houston,they
                      > are suppose to be very
                      > good with muscle dieases and Scolosis(which we just
                      > found out he has)
                      > Patricia (Mom to Thomas,age7,myopathy)
                      >
                      >
                      > robert.shapiro@... wrote:
                      >
                      > Hi Patricia and Kathy,
                      > We have a son who has x-linked myotubular
                      > myopathy. His name is Jay
                      > Jay and he is 5. He is very happy and smart but
                      > very weak. He is in
                      > school but is absent quite often because when he has
                      > a cold we keep him
                      > home and it takes him a long time to recover. The
                      > definitive test for
                      > Myotubular myopathy is a muscle biopsy. Dr. Gail
                      > Herman also can be very
                      > helpful for this. If you contact the MYOTUBULAR
                      > RESOURCE GROUP
                      > (www.mtmrg.org) they will tell you much more. My
                      > son had a Pneumo
                      > vaccine
                      > last year along with flu shots each year. He hasn't
                      > gotten seriously ill
                      > this year. He is probably weaker then your son as
                      > he can not stand or
                      > walk
                      > on his own. He has a trach and a Mic-Key (g-tube)
                      > button. Kathy - Did
                      > your son have X-linked Myotubular myopathy or the
                      > Autosomal type? I
                      > don't know of any boys who are over twelve. I am
                      > very interested in your
                      > experiences.
                      > Thanks,
                      >
                      >
                      > Bob and Sherry
                      >
                      >
                      >
                      >
                      >
                      > Patricia G
                      >
                      > <itspatricia@ To:
                      > Myotubular_Myopathy@yahoogroups.com
                      > yahoo.com> cc:
                      >
                      > Subject:
                      > Re:
                      > [Myotubular_Myopathy] If I can help.........
                      > January 03,
                      >
                      > 2003 05:00 PM
                      >
                      > Please
                      >
                      > respond to
                      >
                      > Myotubular_My
                      >
                      > opathy
                      >
                      >
                      >
                      >
                      >
                      >
                      >
                      >
                      > hi Kathy,My name is Patricia and I have a son who is
                      > 7 and has Myopathy.
                      > He can walk but cant jump,run and has trouble
                      > getting up and down,he gets
                      > tired easily.He has pneumonia alot and is in and out
                      > of the hospital.
                      > I worry about him alot cause we dont know the
                      > outcome of this cause the
                      > doctors dont know which Myopathy he has.
                      > Any advice you can give me,I would be much thankful.
                      > Patricia
                      > "joynkathy <joynkathy@...>"
                      > <joynkathy@...> wrote:To anyone
                      > interested.....
                      > I was the parent of a child with Myotubular
                      > Myopathy. My son Bill,
                      > was born in 1977 and lived until 1997.
                      > If I can be of any assistance to anyone seeking
                      > information,
                      > suggestions or support, please feel free to email
                      > me.
                      >
                      > Sincerely,
                      > Kathy M.
                      >
                      >
                      >
                      >
                      === message truncated ===


                      __________________________________________________
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                      Yahoo! Mail Plus - Powerful. Affordable. Sign up now.
                      http://mailplus.yahoo.com
                    • Patricia G
                      hi Connie.....nice to meet you..... We go to Texas Childrens all the time,have a appointment on the 4th with a dr Gyr and then a sleep study on the 11th.I have
                      Message 10 of 11 , Jan 30, 2003
                      • 0 Attachment

                        hi Connie.....nice to meet you.....

                        We go to Texas Childrens all the time,have a appointment on the 4th with a dr Gyr and then a sleep study on the 11th.I have never been to Shriners,I called them and filled out a appication and they turned me down.I just want more answers and would like to know which Myopathy Thomas has.I have seen lots and lots of dr in Houston......can you tell me of any good there?
                        Patricia

                         connie guinn <kookla_g@...> wrote:

                        Hi, Patricia!
                        My name is Connie.  I also have a son born with
                        x-linked myotubular myopathy (I have one son, Elijah,
                        who passed away in 2001 who had it, and I have another
                        son, Benjamin, who was born this past September).
                        Where in Texas are you located?   I also live in
                        Texas- in the Houston area... close to the Scoggin
                        family (from the myotubular myopathy resource group)
                        which Mr. Shapiro spoke of.  There is also another
                        family close to this area who have 2 living sons also
                        born with x-linked MTM.  Small world!  Since you are
                        already dealing with the Shriner's hospital (located
                        in the Texas Medical Center, have you considered going
                        to Texas Children's Hospital (also located in the
                        Texas Medical Center)?   They are a  really good place
                        to go- lots of experience with this myopathy.  My son,
                        Benjamin, John Scoggin, and the two brothers from this
                        other area family all use Texas Children's Hospital
                        (use the same physicians, too). I hope you get some
                        results soon.
                                          -Connie
                        --- Patricia G <itspatricia@...> wrote:
                        >
                        > hi Bob
                        > we have done genitic testing...found nothing
                        > Thomas is adopted so we have no family
                        > history*sighs*
                        > As far as homebound,I know what you mean,I hate that
                        > Thomas dosent get the interacting with the other
                        > classmates but what we do,when we have to protect
                        > their health?Its hard.What state are you located
                        > in?We are in texas.
                        > I will email her and see if she can offer some
                        > advice
                        > thanks
                        > Patricia
                        >  robert.shapiro@... wrote:
                        > Hi Patricia,
                        >      It was good to hear from you.  Our son may have
                        > to be homebound soon
                        > too.  I hope to keep him in school to have the
                        > interaction with the other
                        > children but it is always a trade-off.   Anyway Dr
                        > Gail Herman (a
                        > geneticist with Ohio State) is part of a group that
                        > isolated the Xlinked
                        > gene responsible for x-linked myotubular myopathy.
                        > There is a test that her
                        > group developed to determine if this disease is
                        > present.  She will probably
                        > ask you about family history which is very relevant
                        > for the x-linked
                        > variety.  In any case she will probably have very
                        > helpful information for
                        > you to get a proper diagnosis. her e-mail address is
                        > hermang@...-state.edu. The previous
                        > address was no good.
                        >
                        > I hope this helps
                        >                Bob
                        >
                        >
                        >
                        >
                        >                                                    
                        >                                                    
                        >     
                        >                     Patricia G                     
                        >                                                    
                        >     
                        >                     <itspatricia@        To:   
                        > Myotubular_Myopathy@yahoogroups.com                
                        >         
                        >                     yahoo.com>           cc:       
                        >                                                    
                        >     
                        >                                          Subject:  
                        >  Re: [Myotubular_Myopathy] If I can help.........  
                        >     
                        >                     January 07,                    
                        >                                                    
                        >     
                        >                     2003 09:12 AM                  
                        >                                                    
                        >     
                        >                     Please                         
                        >                                                    
                        >     
                        >                     respond to                     
                        >                                                    
                        >     
                        >                     Myotubular_My                  
                        >                                                    
                        >     
                        >                     opathy                         
                        >                                                    
                        >     
                        >                                                    
                        >                                                    
                        >     
                        >                                                    
                        >                                                    
                        >     
                        >
                        >
                        >
                        >
                        > hi Bob and Sherry
                        >
                        >
                        > Thomas stayed sick alot in school and his doctor put
                        > him on homebound so
                        > his teacher comes here to the house to teach him,and
                        > we get the flu shot
                        > every years,he still gets sick but not as bad
                        >
                        >
                        > Thomas has has a muscle biospy on his upper thight
                        > and so far all they have
                        > come up with it is a Myopathy*without a name*
                        >
                        >
                        > I put a call  to Shriners Hospital in Houston,they
                        > are suppose to be very
                        > good with muscle dieases and Scolosis(which we just
                        > found out he has)
                        > Patricia (Mom to Thomas,age7,myopathy)
                        >
                        >
                        > robert.shapiro@... wrote:
                        >
                        > Hi Patricia and Kathy,
                        >       We have a son who has x-linked myotubular
                        > myopathy.  His name is Jay
                        > Jay and he is 5.  He is very happy and smart but
                        > very weak.  He is in
                        > school but is absent quite often because when he has
                        > a cold we keep him
                        > home and it takes him a long time to recover.  The
                        > definitive test for
                        > Myotubular myopathy is a muscle biopsy.  Dr. Gail
                        > Herman also can be very
                        > helpful for this.  If you contact the MYOTUBULAR
                        > RESOURCE GROUP
                        > (www.mtmrg.org)  they will tell you much more.  My
                        > son had a Pneumo
                        > vaccine
                        > last year along with flu shots each year.  He hasn't
                        > gotten seriously ill
                        > this year.  He is probably weaker then your son as
                        > he can not stand or
                        > walk
                        > on his own.  He has a trach and a Mic-Key (g-tube)
                        > button.     Kathy - Did
                        > your son have X-linked Myotubular myopathy  or  the
                        > Autosomal  type?  I
                        > don't know of any boys who are over twelve.  I am
                        > very interested in your
                        > experiences.
                        > Thanks,
                        >
                        >
                        >            Bob and Sherry
                        >
                        >
                        >
                        >
                        >
                        >                      Patricia G
                        >
                        >                      <itspatricia@        To:
                        > Myotubular_Myopathy@yahoogroups.com
                        >                      yahoo.com>           cc:
                        >
                        >                                           Subject: 
                        >   Re:
                        > [Myotubular_Myopathy] If I can help.........
                        >                      January 03,
                        >
                        >                      2003 05:00 PM
                        >
                        >                      Please
                        >
                        >                      respond to
                        >
                        >                      Myotubular_My
                        >
                        >                      opathy
                        >
                        >
                        >
                        >
                        >
                        >
                        >
                        >
                        > hi Kathy,My name is Patricia and I have a son who is
                        > 7 and has Myopathy.
                        > He can walk but cant jump,run and has trouble
                        > getting up and down,he gets
                        > tired easily.He has pneumonia alot and is in and out
                        > of the hospital.
                        > I worry about him alot cause we dont know the
                        > outcome of this cause the
                        > doctors dont know which Myopathy he has.
                        > Any advice you can give me,I would be much thankful.
                        > Patricia
                        > "joynkathy <joynkathy@...>"
                        > <joynkathy@...> wrote:To anyone
                        > interested.....
                        > I was the parent of a child with Myotubular
                        > Myopathy.  My son Bill,
                        > was born in 1977 and lived until 1997.
                        > If I can be of any assistance to anyone seeking
                        > information,
                        > suggestions or support, please feel free to email
                        > me.
                        >
                        > Sincerely,
                        > Kathy M.
                        >
                        >
                        >
                        >
                        === message truncated ===


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                      • connie guinn
                        Hi, Patricia. Nice to meet you as well. Do you know if Thomas was born with the symptoms of his disease or not? My sons were both born with it- i.e. it
                        Message 11 of 11 , Jan 30, 2003
                        • 0 Attachment
                          Hi, Patricia. Nice to meet you as well.

                          Do you know if Thomas was born with the symptoms of
                          his disease or not? My sons were both born with it-
                          i.e. it was obvious at birth that something was wrong
                          and the doctors immediately set about finding the
                          diagnosis. So, I can highly recommend the doctors in
                          the NICU at Texas Children's, but I know that won't
                          help you. Um, my only other suggestion is to try
                          the geneticists at Baylor. Dr Potocki is excellent.
                          She actually studied under/alongside of Dr Gail Herman
                          (the geneticist from Ohio whom Bob Shapiro spoke of)
                          when Dr Herman was working for Baylor in Houston. I
                          hope this helps.

                          -Connie
                          --- Patricia G <itspatricia@...> wrote:
                          >
                          > hi Connie.....nice to meet you.....
                          > We go to Texas Childrens all the time,have a
                          > appointment on the 4th with a dr Gyr and then a
                          > sleep study on the 11th.I have never been to
                          > Shriners,I called them and filled out a appication
                          > and they turned me down.I just want more answers and
                          > would like to know which Myopathy Thomas has.I have
                          > seen lots and lots of dr in Houston......can you
                          > tell me of any good there?
                          > Patricia
                          > connie guinn <kookla_g@...> wrote:Hi,
                          > Patricia!
                          > My name is Connie. I also have a son born with
                          > x-linked myotubular myopathy (I have one son,
                          > Elijah,
                          > who passed away in 2001 who had it, and I have
                          > another
                          > son, Benjamin, who was born this past September).
                          > Where in Texas are you located? I also live in
                          > Texas- in the Houston area... close to the Scoggin
                          > family (from the myotubular myopathy resource group)
                          > which Mr. Shapiro spoke of. There is also another
                          > family close to this area who have 2 living sons
                          > also
                          > born with x-linked MTM. Small world! Since you are
                          > already dealing with the Shriner's hospital (located
                          > in the Texas Medical Center, have you considered
                          > going
                          > to Texas Children's Hospital (also located in the
                          > Texas Medical Center)? They are a really good
                          > place
                          > to go- lots of experience with this myopathy. My
                          > son,
                          > Benjamin, John Scoggin, and the two brothers from
                          > this
                          > other area family all use Texas Children's Hospital
                          > (use the same physicians, too). I hope you get some
                          > results soon.
                          > -Connie
                          > --- Patricia G <itspatricia@...> wrote:
                          > >
                          > > hi Bob
                          > > we have done genitic testing...found nothing
                          > > Thomas is adopted so we have no family
                          > > history*sighs*
                          > > As far as homebound,I know what you mean,I hate
                          > that
                          > > Thomas dosent get the interacting with the other
                          > > classmates but what we do,when we have to protect
                          > > their health?Its hard.What state are you located
                          > > in?We are in texas.
                          > > I will email her and see if she can offer some
                          > > advice
                          > > thanks
                          > > Patricia
                          > > robert.shapiro@... wrote:
                          > > Hi Patricia,
                          > > It was good to hear from you. Our son may
                          > have
                          > > to be homebound soon
                          > > too. I hope to keep him in school to have the
                          > > interaction with the other
                          > > children but it is always a trade-off. Anyway Dr
                          > > Gail Herman (a
                          > > geneticist with Ohio State) is part of a group
                          > that
                          > > isolated the Xlinked
                          > > gene responsible for x-linked myotubular myopathy.
                          > > There is a test that her
                          > > group developed to determine if this disease is
                          > > present. She will probably
                          > > ask you about family history which is very
                          > relevant
                          > > for the x-linked
                          > > variety. In any case she will probably have very
                          > > helpful information for
                          > > you to get a proper diagnosis. her e-mail address
                          > is
                          > > hermang@...-state.edu. The previous
                          > > address was no good.
                          > >
                          > > I hope this helps
                          > > Bob
                          > >
                          > >
                          > >
                          > >
                          > >
                          >
                          > >
                          >
                          > >
                          > > Patricia G
                          >
                          > >
                          >
                          > >
                          > > <itspatricia@ To:
                          > > Myotubular_Myopathy@yahoogroups.com
                          >
                          > >
                          > > yahoo.com> cc:
                          >
                          > >
                          >
                          > >
                          > > Subject:
                          >
                          > > Re: [Myotubular_Myopathy] If I can help.........
                          >
                          > >
                          > > January 07,
                          >
                          > >
                          >
                          > >
                          > > 2003 09:12 AM
                          >
                          > >
                          >
                          > >
                          > > Please
                          >
                          > >
                          >
                          > >
                          > > respond to
                          >
                          > >
                          >
                          > >
                          > > Myotubular_My
                          >
                          > >
                          >
                          > >
                          > > opathy
                          >
                          > >
                          >
                          > >
                          > >
                          >
                          > >
                          >
                          > >
                          > >
                          >
                          > >
                          >
                          > >
                          > >
                          > >
                          > >
                          > >
                          > > hi Bob and Sherry
                          > >
                          > >
                          > > Thomas stayed sick alot in school and his doctor
                          > put
                          > > him on homebound so
                          > > his teacher comes here to the house to teach
                          > him,and
                          > > we get the flu shot
                          > > every years,he still gets sick but not as bad
                          > >
                          > >
                          > > Thomas has has a muscle biospy on his upper thight
                          > > and so far all they have
                          > > come up with it is a Myopathy*without a name*
                          > >
                          > >
                          > > I put a call to Shriners Hospital in Houston,they
                          > > are suppose to be very
                          > > good with muscle dieases and Scolosis(which we
                          > just
                          > > found out he has)
                          > > Patricia (Mom to Thomas,age7,myopathy)
                          > >
                          > >
                          > > robert.shapiro@... wrote:
                          > >
                          > > Hi Patricia and Kathy,
                          > > We have a son who has x-linked myotubular
                          > > myopathy. His name is Jay
                          > > Jay and he is 5. He is very happy and smart but
                          > > very weak. He is in
                          > > school but is absent quite often because when he
                          > has
                          > > a cold we keep him
                          > > home and it takes him a long time to recover. The
                          > > definitive test for
                          > > Myotubular myopathy is a muscle biopsy. Dr. Gail
                          > > Herman also can be very
                          > > helpful for this. If you contact the MYOTUBULAR
                          > > RESOURCE GROUP
                          > > (www.mtmrg.org) they will tell you much more. My
                          > > son had a Pneumo
                          > > vaccine
                          > > last year along with flu shots each year. He
                          > hasn't
                          >
                          === message truncated ===


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