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20Re: [Myotubular_Myopathy] If I can help.........

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  • Patricia G
    Jan 7, 2003
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      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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