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The questions revisited. Please read!

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  • Shannon
    Hi everyone, I am reposting the questions that I put up a few weeks ago. For those who have responded, thank you. I have been amazed at how alike our boys are.
    Message 1 of 7 , Nov 26, 2005
      Hi everyone,

      I am reposting the questions that I put up a few weeks ago. For
      those who have responded, thank you. I have been amazed at how alike
      our boys are. I think that gathering this information can be very
      valuable to us, to the researchers.

      Once I have all the information gathered, I will put it together in
      a spread sheet for all that want a copy. We are all an incredible
      resource that can be used for eachother and others that are newly
      diagnosed.

      There are new questions in each section.

      Thanks for replying!

      1) Your Name(s) and Address
      2) Son's name and birthdate.
      3) Current Hospital being treated at.
      4) Pulmonologist treating your son.
      5) Are you a carrier (moms). Is there a family history?
      6) contact email

      NEW QUESTION:

      7) Please email me the following: is your son trached (when), g-
      tube? nissen (fundoplication)? any bone problems? any other
      surgeries? any other inportant or unusual information?

      My address is smashintwo66@....

      The second bit of information are some questions that you could put
      either on the board, but also would be helpful in the email to me.

      Does/ Is your son...

      1) Have (or had) a ridge on his forehead that extends from the
      bridge of the nose up to hairline?
      2) Have extrememly hig pain tolerance?
      3) Have sensitivites to differenct types of fabrics, blankets, and
      skin sensitivity (i.e. doesn't like finger paint on him, doesn't
      like thing on his hands)
      4) Have a milk or soy intolerance?
      5) Have lazy eye or difficulty moving his eyes?
      6) Have a long face with high forehead (or one or the toehr?)?
      7) Very into music or other auditory stimulation?
      8) Very detailed oriented?
      9) Easy going (personality wise)
      10) Did you have extra amniotic fluid? Was he born naturally or c-
      section?

      NEW QUESTIONS:

      1) Does your son have a high arched palate?
      2) Does/ Did your son have undescended testicles. Did he have
      surgery?
    • fords
      Hi Shannon, I agree, there is so little know about MTM and CNM that the documenting all of this information is really helpful for everyone, particularly those
      Message 2 of 7 , Nov 26, 2005

        Hi Shannon,  I agree, there is so little know about MTM and CNM that the documenting all of this information is really helpful for everyone, particularly those people who are just new to all of this.  I am writing with regards to my 2 nephews on behalf of my sister Caron.  It would have been absolutely great to be able to have any of this information on hand when Anthony was diagnosed 15 years ago, so here we go.

         

        • My name is Jodi Ford and my sister (the boys mother) is Caron Eggins
        • Anthony is 15 years old born 1/2/1990 and Declan is 8 born 22/12/1997
        • Currently being treated at the Royal Brisbane Hospital in Brisbane Australia
        • Dr Appleton
        • My sister is not a carrier and we are unaware of any family history, however, there is a history of miscarriages throughout our family history that the doctors have said could possibly be attributed to CNM (they will never know)
        • fords@...
        • Neither boys are trached
        • Neither boys have a ridge on their forehead
        • They both have a high tolerance to pain
        • Neither has shown any sensitivity to materials etc
        • No milk intolerance
        • Slight laziness with eyes but not effecting sight
        • Both are very much into music
        • Neither are detailed orientated
        • Declan is extremely lay back but Anthony on the other hand is generally very quiet mostly, but can be very short tempered at times.  Anthony is not particularly interested in interacting with other people and is absorbed in his computer, but Declan is very communicative.
        • Both boys were born naturally and both were large babies around 10lb 14 – No additional amniotic fluids known
        • Neither have high arched palates
        • Both had undescended testicles and both had operations

         

        I really hope that this information is helpful.  Please let me know if I can help with anything else as I know it is fairly uncommon for a family to have 2 boys with CNM.

         

        Regars, Jodi

         

         


        From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of Shannon
        Sent: Sunday, 27 November 2005 2:43 PM
        To: Myotubular_Myopathy@yahoogroups.com
        Subject: [Myotubular_Myopathy] The questions revisited. Please read!

         

        Hi everyone,

        I am reposting the questions that I put up a few weeks ago. For
        those who have responded, thank you. I have been amazed at how alike
        our boys are. I think that gathering this information can be very
        valuable to us, to the researchers.

        Once I have all the information gathered, I will put it together in
        a spread sheet for all that want a copy. We are all an incredible
        resource that can be used for eachother and others that are newly
        diagnosed.

        There are new questions in each section.

        Thanks for replying!

        1) Your Name(s) and Address
        2) Son's name and birthdate.
        3) Current Hospital being treated at.
        4) Pulmonologist treating your son.
        5) Are you a carrier (moms). Is there a family history?
        6) contact email

        NEW QUESTION:

        7) Please email me the following: is your son trached (when), g-
        tube? nissen (fundoplication)? any bone problems? any other
        surgeries? any other inportant or unusual information?

        My address is smashintwo66@....

        The second bit of information are some questions that you could put
        either on the board, but also would be helpful in the email to me.

        Does/ Is your son...

        1) Have (or had) a ridge on his forehead that extends from the
        bridge of the nose up to hairline?
        2) Have extrememly hig pain tolerance?
        3) Have sensitivites to differenct types of fabrics, blankets, and
        skin sensitivity (i.e. doesn't like finger paint on him, doesn't
        like thing on his hands)
        4) Have a milk or soy intolerance?
        5) Have lazy eye or difficulty moving his eyes?
        6) Have a long face with high forehead (or one or the toehr?)?
        7) Very into music or other auditory stimulation?
        8) Very detailed oriented?
        9) Easy going (personality wise)
        10) Did you have extra amniotic fluid? Was he born naturally or c-
        section?

        NEW QUESTIONS:

        1) Does your son have a high arched palate?
        2) Does/ Did your son have undescended testicles. Did he have
        surgery?








      • Amanda Hollingsworth
        Jacob had trach, g-tube, nissen fundoplication at 5 weeks of age (March 5, 2002). He has a dislocated left hip socket; his right leg is about 1 inch longer
        Message 3 of 7 , Nov 27, 2005
          Jacob had trach, g-tube, nissen fundoplication at 5 weeks of age (March 5, 2002).  He has a dislocated left hip socket; his right leg is about 1 inch longer than the left.  He definitely has a high-arched palate.  And, yes, he did (does) have undescended testicles.  He had exploratory and placement surgery on the left, then the right one disappeared. 
           
          Amanda

          Shannon <smashintwo66@...> wrote:
          Hi everyone,

          I am reposting the questions that I put up a few weeks ago. For
          those who have responded, thank you. I have been amazed at how alike
          our boys are. I think that gathering this information can be very
          valuable to us, to the researchers.

          Once I have all the information gathered, I will put it together in
          a spread sheet for all that want a copy. We are all an incredible
          resource that can be used for eachother and others that are newly
          diagnosed.

          There are new questions in each section.

          Thanks for replying!

          1) Your Name(s) and Address
          2) Son's name and birthdate.
          3) Current Hospital being treated at.
          4) Pulmonologist treating your son.
          5) Are you a carrier (moms). Is there a family history?
          6) contact email

          NEW QUESTION:

          7) Please email me the following: is your son trached (when), g-
          tube? nissen (fundoplication)? any bone problems? any other
          surgeries? any other inportant or unusual information?

          My address is smashintwo66@....

          The second bit of information are some questions that you could put
          either on the board, but also would be helpful in the email to me.

          Does/ Is your son...

          1) Have (or had) a ridge on his forehead that extends from the
          bridge of the nose up to hairline?
          2) Have extrememly hig pain tolerance?
          3) Have sensitivites to differenct types of fabrics, blankets, and
          skin sensitivity (i.e. doesn't like finger paint on him, doesn't
          like thing on his hands)
          4) Have a milk or soy intolerance?
          5) Have lazy eye or difficulty moving his eyes?
          6) Have a long face with high forehead (or one or the toehr?)?
          7) Very into music or other auditory stimulation?
          8) Very detailed oriented?
          9) Easy going (personality wise)
          10) Did you have extra amniotic fluid? Was he born naturally or c-
          section?

          NEW QUESTIONS:

          1) Does your son have a high arched palate?
          2) Does/ Did your son have undescended testicles. Did he have
          surgery?









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        • jacqschadee
          ... Jacqueline Schadee/Robert Knippenburg ,The Netherlands ... Ingo Thomas Knippenburg 23-sept-2004 to 9-febr-2005 ... Was at Emma Kinderziekenhuis, Amsterdam,
          Message 4 of 7 , Nov 27, 2005
            > Thanks for replying!
            >
            > 1) Your Name(s) and Address
            Jacqueline Schadee/Robert Knippenburg ,The Netherlands
            > 2) Son's name and birthdate.
            Ingo Thomas Knippenburg
            23-sept-2004 to 9-febr-2005
            > 3) Current Hospital being treated at
            Was at Emma Kinderziekenhuis, Amsterdam, Netherlands
            > 4) Pulmonologist treating your son.
            Wish they did!
            > 5) Are you a carrier (moms). Is there a family history?
            I don't no. Mutated gene has not been found. No family history

            > NEW QUESTION:
            >
            > 7) is your son trached (when)
            ), g-tube? nissen (fundoplication)? any bone problems?
            any other > surgeries? any other inportant or unusual information?
            Six times 'no'
            >
            > Did your son...
            >
            > 1) Have (or had) a ridge on his forehead that extends from the
            > bridge of the nose up to hairline? no
            > 2) Have extrememly hig pain tolerance? Abit higher I think, lies on his arm/hand without
            crying
            > 3) Have sensitivites to differenct types of fabrics, blankets, and
            > skin sensitivity (i.e. doesn't like finger paint on him, doesn't
            > like thing on his hands) Yes I think he was fond of soft fabrics
            > 4) Have a milk or soy intolerance? No
            > 5) Have lazy eye or difficulty moving his eyes? No
            > 6) Have a long face with high forehead (or one or the toehr?)? Yes, both
            > 7) Very into music or other auditory stimulation? Yes loved music
            > 8) Very detailed oriented? Don't know
            > 9) Easy going (personality wise) Yes! Incredible after all that he went through. He was
            always confident and not scared
            > 10) Did you have extra amniotic fluid? Was he born naturally or c-
            > section? very much amniotic fluid, natural birth after 42,5 weeks
            >
            > NEW QUESTIONS:
            >
            > 1) Did your son have a high arched palate? Yes
            > 2) Does/ Did your son have undescended testicles. Did he have
            > surgery? No
            >
          • Anne McAuliffe
            Dear Shannon Answers to your revised questions as follows: 1) Your Name(s) and Address Anne and Andrew Lennox, 45 Kelmscott Road, London, SW11 6QX UK 2) Son s
            Message 5 of 7 , Nov 29, 2005
              Dear Shannon
              Answers to your revised questions as follows:

              1) Your Name(s) and Address
              Anne and Andrew Lennox, 45 Kelmscott Road, London, SW11 6QX UK

              2) Son's name and birthdate.
              Tom Lennox 21 july 2003

              3) Current Hospital being treated at.
              St Georges, Tooting, London - acute care - Professor Daffyd Walters
              The Royal Brompton, London - long term lung care - Dr Anita Bush and Dr
              Anita Simmonds
              The Hammersmith Hospital, London - neuromuscular - Professor Francesco
              Muntonie and Dr Adnam Manzur

              4) Pulmonologist treating your son.
              See 3 above

              5) Are you a carrier (moms). Is there a family history?
              Yes I am a carrier. Uncle died at birth, very few boys in that generation,
              grandmother's brother was in wheelchair and died at 13. Not confirmed but
              suspected that this indicates a family history

              6) contact email
              anne@...

              7) Please email me the following: is your son trached (when), g-
              tube? nissen (fundoplication)? any bone problems? any other
              surgeries? any other inportant or unusual information?
              Tom has a G-tube inserted when he was 11 months old - June 2004. No
              fundoplication. No other surgery.

              1) Have (or had) a ridge on his forehead that extends from the
              bridge of the nose up to hairline?
              No

              2) Have extrememly hig pain tolerance?
              Yes

              3) Have sensitivites to differenct types of fabrics, blankets, and
              skin sensitivity (i.e. doesn't like finger paint on him, doesn't
              like thing on his hands)
              Doesn't like things on his hands, doesn't like tissues left near him!

              4) Have a milk or soy intolerance?
              Appears to find milk based products very hard to digest - is on an elemental
              feed - one where the proteins are 'predigested'

              5) Have lazy eye or difficulty moving his eyes?
              No

              6) Have a long face with high forehead (or one or the toehr?)?
              Yes

              7) Very into music or other auditory stimulation?
              Yes

              8) Very detailed oriented?
              Not particularly yet - but only 2!

              9) Easy going (personality wise)
              Yes but can throw a fine (but silent) tantrum!

              10) Did you have extra amniotic fluid? Was he born naturally or c-
              section?
              No extra amniotic fluid. Born naturally 41 weeks plus 6 days

              1) Does your son have a high arched palate?
              Yes

              2) Does/ Did your son have undescended testicles. Did he have
              surgery?
              Haven't had his testicles looked at since he was a baby. One was
              undescended at that time.
            • tinabeana24
              I will respond for my mo as she would ... Ottumwa, IA ... history both parents carrier ... Daughter- yes to trach, g tube (i am not certain of nissen )
              Message 6 of 7 , Nov 30, 2005
                I will respond for my mo as she would
                >
                > 1) Your Name(s) and Address sabrina hopkins RR 1 Moravia, Ia 52571
                > 2) Son's name and birthdate. Daughter 12/3/1989
                > 3) Current Hospital being treated at.University of Iowa
                > 4) Pulmonologist treating your son. Daughter Ron Graeff in
                Ottumwa, IA
                > 5) Are you a carrier (moms). Is there a family history? no family
                history both parents carrier
                > 6) contact email sabrina52571@...
                >
                > NEW QUESTION:
                >
                > 7) Please email me the following: is your son trached (when), g-
                > tube? nissen (fundoplication)? any bone problems? any other
                > surgeries? any other inportant or unusual information?
                Daughter- yes to trach, g tube (i am not certain of nissen )
                Scoliosis, Surgieries- spinal fussion with rod placement, t&a, broch-
                scopes multilpe, cord legthening of the achillies tendons maybe some
                others i don't recall mom would

                >
                > Does/ Is your daughter
                >
                > 1) Have (or had) a ridge on his forehead that extends from the
                > bridge of the nose up to hairline? no
                > 2) Have extrememly hig pain tolerance? no very low
                > 3) Have sensitivites to differenct types of fabrics, blankets, and
                > skin sensitivity (i.e. doesn't like finger paint on him, doesn't
                > like thing on his hands) no
                > 4) Have a milk or soy intolerance?no
                > 5) Have lazy eye or difficulty moving his eyes? yes lazy eye
                > 6) Have a long face with high forehead (or one or the toehr?)?both
                > 7) Very into music or other auditory stimulation?yes
                > 8) Very detailed oriented?sometimes
                > 9) Easy going (personality wise)no she knows what she wants and
                how she wants it done if it pertains to her it is her way or no way
                > 10) Did you have extra amniotic fluid? Was he born naturally or c-
                > section? naturally no extra fluid

                >
                > 1) Does your son have a high arched palate? daughter yes
                > 2) Does/ Did your son have undescended testicles. Did he have
                > surgery? not applicable
                >
              • Dana
                ... alike ... Dana Lofton Panama City Beach, Florida
                Message 7 of 7 , Nov 30, 2005
                  --- In Myotubular_Myopathy@yahoogroups.com, "Shannon"
                  <smashintwo66@y...> wrote:
                  >
                  > Hi everyone,
                  >
                  > I am reposting the questions that I put up a few weeks ago. For
                  > those who have responded, thank you. I have been amazed at how
                  alike
                  > our boys are. I think that gathering this information can be very
                  > valuable to us, to the researchers.
                  >
                  > Once I have all the information gathered, I will put it together in
                  > a spread sheet for all that want a copy. We are all an incredible
                  > resource that can be used for eachother and others that are newly
                  > diagnosed.
                  >
                  > There are new questions in each section.
                  >
                  > Thanks for replying!
                  >
                  > 1) Your Name(s) and Address
                  Dana Lofton Panama City Beach, Florida< USA
                  > 2) Son's name and birthdate.
                  Cason Scott June 9, 2003
                  > 3) Current Hospital being treated at.
                  Sacred Heart Pensacola, Florida, USA
                  > 4) Pulmonologist treating your son.
                  Dr. Maupin
                  > 5) Are you a carrier (moms).Yes Is there a family history?DK
                  > 6) contact email
                  > casonsmiracle@...
                  > NEW QUESTION:
                  >
                  > 7) Please email me the following: is your son trached (when), g-
                  > tube? nissen (fundoplication)? any bone problems? any other
                  > surgeries? any other inportant or unusual information?
                  trached-March 2003
                  g-tube without fundo
                  no
                  testicle brought down, 2 muscle biopsies
                  >
                  > My address is smashintwo66@
                  >
                  > The second bit of information are some questions that you could put
                  > either on the board, but also would be helpful in the email to me.
                  >
                  > Does/ Is your son...
                  >
                  > 1) Have (or had) a ridge on his forehead that extends from the
                  > bridge of the nose up to hairline?no
                  > 2) Have extrememly hig pain tolerance?yes
                  > 3) Have sensitivites to differenct types of fabrics, blankets, and
                  > skin sensitivity (i.e. doesn't like finger paint on him, doesn't
                  > like thing on his hands)yes
                  > 4) Have a milk or soy intolerance?no
                  > 5) Have lazy eye or difficulty moving his eyes? slightly
                  > 6) Have a long face with high forehead (or one or the toehr?)?yes
                  > 7) Very into music or other auditory stimulation?yes
                  > 8) Very detailed oriented?yes yes yes
                  > 9) Easy going (personality wise)yes
                  > 10) Did you have extra amniotic fluid? yes
                  Was he born naturally or c-
                  > section? c-section
                  >
                  > NEW QUESTIONS:
                  >
                  > 1) Does your son have a high arched palate? yes
                  > 2) Does/ Did your son have undescended testicles. yes
                  Did he have
                  > surgery?yes
                  >
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