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24Re: [Myotubular_Myopathy] If I can help.........

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  • robert.shapiro@JPMchase.com
    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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      ---------------------------------
      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



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

      Yahoo! Groups Sponsor




      ADVERTISEMENT







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



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



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      Do you Yahoo!?
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      Do you Yahoo!?
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