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Carnitine & carnitor

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  • SmithFamily
    I hope someone can help me help my friend. Her son was on Valproic Acid and then tested to have a carnitine deficiency. Had the deficiency for a long long
    Message 1 of 5 , Feb 28, 2001
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      I hope someone can help me help my friend. Her son was on Valproic Acid and
      then tested to have a carnitine deficiency. Had the deficiency for a long
      long time after he stopped taking the med. Was put on Carnitor and
      improved. Well NOW they have a new doctor who tested his carnitine levels,
      found them to be normal, & took him off carnitine since he didn't have a
      deficiency anymore.

      It sounds silly to us. Is there any documentation she could show this
      doctor? I thought that once a carnitine deficieny was found the standard
      thing was to continue with the carnitor. Is this doctor wanting to document
      a deficiency returning before putting him on carnitine.

      This boy is a wonderful kid who has many autistic like symptoms (not
      officially diagnosed mito). His mom is concerned about the negative effect
      taking away the carnitor might have.

      Thanks in advance for any help you can give. It is wonderful to know that
      you all are out there and that at least one of you will be able to help!

      Barbara
    • USAQUIXTAR@aol.com
      Barbara, I think that the best thing to do in this situation is to watch this little boy and see what happens now that he is not on the Carnitine. See if he
      Message 2 of 5 , Mar 1, 2001
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        Barbara,

        I think that the best thing to do in this situation is to watch this little
        boy and see what happens now that he is not on the Carnitine.  See if he
        regresses and take a level in a couple of weeks to see if the levels are down
        again.  

        Maybe the doctor IS trying to see if he needs the supplementation or not.

        My daughters and I are all on Carnitine for a deficiency and take it
        faithfully every day and every night.  To my understanding, they will always
        have to take it.  I may be mistaken though, but from what I understand, our
        bodies are deficient because they  have a hard time storing the carnitine or
        producing it.  I'm not sure which though.  I hope someone can give you more
        info on this one.  You would think that I would know more about this stuff
        since we have it!

        I hope your friend's son gets the help he needs.

        Jayne Nelsen:) (Mom to Carly-Complex II and Maddy-possible Complex II, Autism)
      • Judith and Bryan Turner
        Valproic acid is known to deplete carnitine, so if he is off of that medication, maybe the doctor is assuming the carnitine deficiency was only due to the med.
        Message 3 of 5 , Mar 1, 2001
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          Valproic acid is known to deplete carnitine, so if he is off of that
          medication, maybe the doctor is assuming the carnitine deficiency was
          only due to the med. If I were the parent, I would wait a bit and ask
          for another carnitine test, just to make sure.
          Judith

          ----- Original Message -----
          From: SmithFamily <msmithva@...>
          To: <Mito@yahoogroups.com>
          Sent: Wednesday, February 28, 2001 1:21 PM
          Subject: [Mito] Carnitine & carnitor


          > I hope someone can help me help my friend. Her son was on Valproic
          Acid and
          > then tested to have a carnitine deficiency. Had the deficiency for a
          long
          > long time after he stopped taking the med. Was put on Carnitor and
          > improved. Well NOW they have a new doctor who tested his carnitine
          levels,
          > found them to be normal, & took him off carnitine since he didn't have
          a
          > deficiency anymore.
          >
          > It sounds silly to us. Is there any documentation she could show this
          > doctor? I thought that once a carnitine deficieny was found the
          standard
          > thing was to continue with the carnitor. Is this doctor wanting to
          document
          > a deficiency returning before putting him on carnitine.
          >
          > This boy is a wonderful kid who has many autistic like symptoms (not
          > officially diagnosed mito). His mom is concerned about the negative
          effect
          > taking away the carnitor might have.
          >
          > Thanks in advance for any help you can give. It is wonderful to know
          that
          > you all are out there and that at least one of you will be able to
          help!
          >
          > Barbara
          >
          >
          >
          > Brought to you by www.imdn.org - an on-line support group for those
          affected by mitochondrial disease.
          >
          > Your use of Yahoo! Groups is subject to
          http://docs.yahoo.com/info/terms/
          >
          >
          >
        • MELINDA DOTHEROW
          Valproic acid does deplete the carnitine. BUT, Taylor never had a low carnitine level. My doc put him on Carnitor anyway and said that he needed it. It
          Message 4 of 5 , Mar 1, 2001
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            Valproic acid does deplete the carnitine. BUT, Taylor never had a low
            carnitine level. My doc put him on Carnitor anyway and said that he needed
            it. It helps move some of the "trash out" because a mito body doesnt know
            how to do the transport thing for energy. How do you like that medical
            terminology? I would get a second opinion. Tell the conference
            travelers to ask that as one of the questions when they have the doctor,
            parent panel luncheon. Good luck. Melinda


            ----- Original Message -----
            From: Judith and Bryan Turner <jbturner7@...>
            To: <Mito@yahoogroups.com>
            Sent: Thursday, March 01, 2001 12:58 PM
            Subject: Re: [Mito] Carnitine & carnitor


            > Valproic acid is known to deplete carnitine, so if he is off of that
            > medication, maybe the doctor is assuming the carnitine deficiency was
            > only due to the med. If I were the parent, I would wait a bit and ask
            > for another carnitine test, just to make sure.
            > Judith
            >
            > ----- Original Message -----
            > From: SmithFamily <msmithva@...>
            > To: <Mito@yahoogroups.com>
            > Sent: Wednesday, February 28, 2001 1:21 PM
            > Subject: [Mito] Carnitine & carnitor
            >
            >
            > > I hope someone can help me help my friend. Her son was on Valproic
            > Acid and
            > > then tested to have a carnitine deficiency. Had the deficiency for a
            > long
            > > long time after he stopped taking the med. Was put on Carnitor and
            > > improved. Well NOW they have a new doctor who tested his carnitine
            > levels,
            > > found them to be normal, & took him off carnitine since he didn't have
            > a
            > > deficiency anymore.
            > >
            > > It sounds silly to us. Is there any documentation she could show this
            > > doctor? I thought that once a carnitine deficieny was found the
            > standard
            > > thing was to continue with the carnitor. Is this doctor wanting to
            > document
            > > a deficiency returning before putting him on carnitine.
            > >
            > > This boy is a wonderful kid who has many autistic like symptoms (not
            > > officially diagnosed mito). His mom is concerned about the negative
            > effect
            > > taking away the carnitor might have.
            > >
            > > Thanks in advance for any help you can give. It is wonderful to know
            > that
            > > you all are out there and that at least one of you will be able to
            > help!
            > >
            > > Barbara
            > >
            > >
            > >
            > > Brought to you by www.imdn.org - an on-line support group for those
            > affected by mitochondrial disease.
            > >
            > > Your use of Yahoo! Groups is subject to
            > http://docs.yahoo.com/info/terms/
            > >
            > >
            > >
            >
            >
            > Brought to you by www.imdn.org - an on-line support group for those
            affected by mitochondrial disease.
            >
            > Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
            >
            >
            >
          • janet sample
            i also think you should get a second opinion or definitely only go a few weeks before getting the level tested. I was put on carnitor and do not have a
            Message 5 of 5 , Mar 1, 2001
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              i also think you should get a second opinion or definitely only go a few
              weeks before getting the level tested. I was put on carnitor and do not
              have a definiciy per say--just the melas itself. i never had any kind of
              test done but was put on it anyway.

              as far as the medical terminology--that is how doctor tick explained things
              to us the first time we saw him about my sister. And, when i saw him at his
              office in 1997 he drew on the examing table tissue paper diagrams. The way
              he explained mito is a furnace or car always burning bad gas. He explained
              the DCA as a drain for the lactic acid. But, there is no cure for the
              faucets that are turned on and pouring it out.

              anyway, i understood what he was saying.
              ----- Original Message -----
              From: "MELINDA DOTHEROW" <dsdmtd@...>
              To: <Mito@yahoogroups.com>
              Sent: Thursday, March 01, 2001 12:30 PM
              Subject: Re: [Mito] Carnitine & carnitor


              > Valproic acid does deplete the carnitine. BUT, Taylor never had a low
              > carnitine level. My doc put him on Carnitor anyway and said that he
              needed
              > it. It helps move some of the "trash out" because a mito body doesnt know
              > how to do the transport thing for energy. How do you like that medical
              > terminology? I would get a second opinion. Tell the conference
              > travelers to ask that as one of the questions when they have the doctor,
              > parent panel luncheon. Good luck. Melinda
              >
              >
              > ----- Original Message -----
              > From: Judith and Bryan Turner <jbturner7@...>
              > To: <Mito@yahoogroups.com>
              > Sent: Thursday, March 01, 2001 12:58 PM
              > Subject: Re: [Mito] Carnitine & carnitor
              >
              >
              > > Valproic acid is known to deplete carnitine, so if he is off of that
              > > medication, maybe the doctor is assuming the carnitine deficiency was
              > > only due to the med. If I were the parent, I would wait a bit and ask
              > > for another carnitine test, just to make sure.
              > > Judith
              > >
              > > ----- Original Message -----
              > > From: SmithFamily <msmithva@...>
              > > To: <Mito@yahoogroups.com>
              > > Sent: Wednesday, February 28, 2001 1:21 PM
              > > Subject: [Mito] Carnitine & carnitor
              > >
              > >
              > > > I hope someone can help me help my friend. Her son was on Valproic
              > > Acid and
              > > > then tested to have a carnitine deficiency. Had the deficiency for a
              > > long
              > > > long time after he stopped taking the med. Was put on Carnitor and
              > > > improved. Well NOW they have a new doctor who tested his carnitine
              > > levels,
              > > > found them to be normal, & took him off carnitine since he didn't have
              > > a
              > > > deficiency anymore.
              > > >
              > > > It sounds silly to us. Is there any documentation she could show this
              > > > doctor? I thought that once a carnitine deficieny was found the
              > > standard
              > > > thing was to continue with the carnitor. Is this doctor wanting to
              > > document
              > > > a deficiency returning before putting him on carnitine.
              > > >
              > > > This boy is a wonderful kid who has many autistic like symptoms (not
              > > > officially diagnosed mito). His mom is concerned about the negative
              > > effect
              > > > taking away the carnitor might have.
              > > >
              > > > Thanks in advance for any help you can give. It is wonderful to know
              > > that
              > > > you all are out there and that at least one of you will be able to
              > > help!
              > > >
              > > > Barbara
              > > >
              > > >
              > > >
              > > > Brought to you by www.imdn.org - an on-line support group for those
              > > affected by mitochondrial disease.
              > > >
              > > > Your use of Yahoo! Groups is subject to
              > > http://docs.yahoo.com/info/terms/
              > > >
              > > >
              > > >
              > >
              > >
              > > Brought to you by www.imdn.org - an on-line support group for those
              > affected by mitochondrial disease.
              > >
              > > Your use of Yahoo! Groups is subject to
              http://docs.yahoo.com/info/terms/
              > >
              > >
              > >
              >
              >
              > Brought to you by www.imdn.org - an on-line support group for those
              affected by mitochondrial disease.
              >
              > Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
              >
              >
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