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Scratching

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  • Jessica Juckers
    ahh! Jack has always been a scratcher, whenever we lift he tops an expose his skin he always went straight for it and scratched. We first put it down as him
    Message 1 of 9 , Oct 15, 2004
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      ahh! Jack has always been a scratcher, whenever we lift he tops an expose his skin he always went straight for it and scratched. We first put it down as him feeling & exploring his body, then habitual, then we spoke to a pscyhologist and we thought it wasn't a stress induced habit. However now, I don't know what to do, it drives us up the wall, when we dress he we put anything over him so he can't scratch!! Sometimes one of us has to hold his hands down. He really has a good go at it too, it become red and it horrid.
      Has anyone noticed this with there boys? Any way of dealing with it? Any definate cause?
      I am thinking liver (at last resort) Jacks has high calcium in urine/blood which is common with MTM. I think it has to do with salts or something?

      Help me!!
      Itchy boy's mum
    • Shannon
      Hi Jess, Javad was a HUGE scratcher too! It was getting to the point that he was making open scratches on his body. In January or so, we took Javad to the dr
      Message 2 of 9 , Oct 15, 2004
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        Hi Jess,

        Javad was a HUGE scratcher too! It was getting to the point that he
        was making open scratches on his body. In January or so, we took
        Javad to the dr and they suggested that we sdtart giving him 5cc of
        Claritin (loratadine syrup) every am. I was shocked that his
        scratching stopped almost immediately! It has been amazing! We
        continue to give him one dose daily.

        Amanda, I am so happy to hear about Jacob's surgery! :)That is
        wonderful to hear!

        I am glad that Remi's surgery went well! Wonderful!

        I wanted to share some exciting news with you all...today I took
        Javad to Shriners for his appointment at the metabolic clinic. This
        clinic is what helps track his bone density. If you remember, he had
        been diagnosed with osteoporosis. We have been giving him medication
        every 2 months to help with this. Anyway, we were given the report
        that Javad has increased bone growth by a whopping 23%! The average
        is 7-8%. It is very exciting and wanteed to share. Javad is almost
        at the very bottom of normal for bone density! :)

        Talk to you soon!

        Shannon
      • Lill Tove
        With Remi it s just the same. We cut his fingernails every other day:-) I cant wait to tell his Dr about that thing Shannon gives Javad. Lill Tove ... From:
        Message 3 of 9 , Oct 16, 2004
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          With Remi it's just the same. We cut his fingernails every other day:-)
           
          I cant wait to tell his Dr about that thing Shannon gives Javad.
           
          Lill Tove
          ----- Original Message -----
          Sent: Friday, October 15, 2004 3:13 PM
          Subject: [Myotubular_Myopathy] Scratching


          ahh! Jack has always been a scratcher, whenever we lift he tops an expose his skin he always went straight for it and scratched. We first put it down as him feeling & exploring his body, then habitual, then we spoke to a pscyhologist and we thought it wasn't a stress induced habit. However now, I don't know what to do, it drives us up the wall, when we dress he we put anything over him so he can't scratch!! Sometimes one of us has to hold his hands down. He really has a good go at it too, it become red and it horrid.
          Has anyone noticed this with there boys? Any way of dealing with it? Any definate cause?
          I am thinking liver (at last resort) Jacks has high calcium in urine/blood which is common with MTM. I think it has to do with salts or something?

          Help me!!
          Itchy boy's mum

        • Jessica Juckers
          Shannon. can you please explain the drug Javad gets? especially the indgrediants so we can find something similar for our doctors to prescribe Jack. Jack was
          Message 4 of 9 , Oct 16, 2004
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            Shannon. can you please explain the drug Javad gets? especially the indgrediants so we can find something similar for our doctors to prescribe Jack.
            Jack was prescribe Phenergan which is a Promethazine elixir.
            Indgrediants are promethazine hydrochloride, this is basically an antihistamine, for allergic reactions, travel sickness, nausea and vomiting. On of the side effects is drowsiness, which is not helpful at all as he scratches when he is awake, too many times has he been given this in hospital and spent it all woozy, thankfully its PRN order, So I can direct the nurses to not give it to him.
            Another alternative would be great, as I said it's driving us crazy :-!
            Jess


            Lill Tove wrote:
            With Remi it's just the same. We cut his fingernails every other day:-)
             
            I cant wait to tell his Dr about that thing Shannon gives Javad.
             
            Lill Tove
            ----- Original Message -----
            Sent: Friday, October 15, 2004 3:13 PM
            Subject: [Myotubular_Myopathy] Scratching


            ahh! Jack has always been a scratcher, whenever we lift he tops an expose his skin he always went straight for it and scratched. We first put it down as him feeling & exploring his body, then habitual, then we spoke to a pscyhologist and we thought it wasn't a stress induced habit. However now, I don't know what to do, it drives us up the wall, when we dress he we put anything over him so he can't scratch!! Sometimes one of us has to hold his hands down. He really has a good go at it too, it become red and it horrid.
            Has anyone noticed this with there boys? Any way of dealing with it? Any definate cause?
            I am thinking liver (at last resort) Jacks has high calcium in urine/blood which is common with MTM. I think it has to do with salts or something?

            Help me!!
            Itchy boy's mum



          • ANN MILLER
            Hi, Kyle is a lite scratcher. His skin is dry and flakey. He has scratched at times and made himself really red. Kyle takes 5cc of Claritin every morning.
            Message 5 of 9 , Oct 16, 2004
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              Hi,
               
              Kyle is a lite scratcher.  His skin is dry and flakey.  He has scratched at times and made himself really red.   Kyle takes 5cc of Claritin every
              morning.  I also use Keri lotion for sensitive skin on his whole body after every bath.  The scratching has stopped.  Now he likes to pat his
              stomach and hunt for his belly button.
               
              take care,
               
              Darlene
               
               
               
               
              ----- Original Message -----
              Sent: Friday, October 15, 2004 9:13 AM
              Subject: [Myotubular_Myopathy] Scratching


              ahh! Jack has always been a scratcher, whenever we lift he tops an expose his skin he always went straight for it and scratched. We first put it down as him feeling & exploring his body, then habitual, then we spoke to a pscyhologist and we thought it wasn't a stress induced habit. However now, I don't know what to do, it drives us up the wall, when we dress he we put anything over him so he can't scratch!! Sometimes one of us has to hold his hands down. He really has a good go at it too, it become red and it horrid.
              Has anyone noticed this with there boys? Any way of dealing with it? Any definate cause?
              I am thinking liver (at last resort) Jacks has high calcium in urine/blood which is common with MTM. I think it has to do with salts or something?

              Help me!!
              Itchy boy's mum

            • Shannon
              Hi Jess, The medicine is called Claritin. Adults take it in tablet form for allergies, but Javad takes it in the liquid form. Darlene says Kyle takes the same
              Message 6 of 9 , Oct 16, 2004
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                Hi Jess,

                The medicine is called Claritin. Adults take it in tablet form for
                allergies, but Javad takes it in the liquid form. Darlene says Kyle
                takes the same thing. It is also called Loratadine (the generic
                version) syrup. He takes 5cc per day.

                Shannon
              • Jessica Juckers
                Thanks Shannon, We have Claritine here, which is an alergy med, we use it for hayfever. Will speak to his doctors next week. Thanks again ;-) Jess Shannon
                Message 7 of 9 , Oct 16, 2004
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                  Thanks Shannon,
                  We have Claritine here, which is an alergy med, we use it for hayfever. Will speak to his doctors next week.
                  Thanks again ;-)
                  Jess
                  Shannon wrote:

                  Hi Jess,

                  The medicine is called Claritin. Adults take it in tablet form for
                  allergies, but Javad takes it in the liquid form. Darlene says Kyle
                  takes the same thing. It is also called Loratadine (the generic
                  version) syrup. He takes 5cc per day.

                  Shannon





                • redscootee@webtv.net
                  Shannon, WTG Javad what great news about his increased bone growth. Keep up the great job. Keep us posted. If the bone growth continues to improve will the
                  Message 8 of 9 , Oct 17, 2004
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                    Shannon,
                    WTG Javad what great news about his increased bone growth. Keep up the
                    great job. Keep us posted. If the bone growth continues to improve will
                    the osteoporosis ever become a none issue?
                    take care pat
                  • jreilly05
                    hi im a carer for a 9yr old mtm boy in england--we had this scratching problem too---for quite a few yrs--it came to a head when he developed jaundice
                    Message 9 of 9 , Nov 3, 2005
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                      hi im a carer for a 9yr old mtm boy in england--we had this
                      scratching problem too---for quite a few yrs--it came to a head when
                      he developed jaundice too--turned out to be liver problems --ill try
                      and find out the actual name for the condition--cant remmeber right
                      now--he takes medicine for it and it helps a lot! -
                      -- In Myotubular_Myopathy@yahoogroups.com, "ANN MILLER" <dm4462@m...>
                      wrote:
                      >
                      > Hi,
                      >
                      > Kyle is a lite scratcher. His skin is dry and flakey. He has
                      scratched at times and made himself really red. Kyle takes 5cc of
                      Claritin every
                      > morning. I also use Keri lotion for sensitive skin on his whole
                      body after every bath. The scratching has stopped. Now he likes to
                      pat his
                      > stomach and hunt for his belly button.
                      >
                      > take care,
                      >
                      > Darlene
                      >
                      >
                      >
                      >
                      > ----- Original Message -----
                      > From: Jessica Juckers<mailto:jessmark@b...>
                      > To:
                      Myotubular_Myopathy<mailto:Myotubular_Myopathy@yahoogroups.com>
                      > Sent: Friday, October 15, 2004 9:13 AM
                      > Subject: [Myotubular_Myopathy] Scratching
                      >
                      >
                      >
                      > ahh! Jack has always been a scratcher, whenever we lift he tops
                      an expose his skin he always went straight for it and scratched. We
                      first put it down as him feeling & exploring his body, then habitual,
                      then we spoke to a pscyhologist and we thought it wasn't a stress
                      induced habit. However now, I don't know what to do, it drives us up
                      the wall, when we dress he we put anything over him so he can't
                      scratch!! Sometimes one of us has to hold his hands down. He really
                      has a good go at it too, it become red and it horrid.
                      > Has anyone noticed this with there boys? Any way of dealing with
                      it? Any definate cause?
                      > I am thinking liver (at last resort) Jacks has high calcium in
                      urine/blood which is common with MTM. I think it has to do with salts
                      or something?
                      >
                      > Help me!!
                      > Itchy boy's mum
                      >
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