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27Re: [Myotubular_Myopathy] If I can help.........

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  • connie guinn
    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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