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Re: [Mito] Re: Emily and baby Henry's family

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  • Lisa Nerenhausen
    I wanted to let you know we are still figuring out a diagnosis for my daughter, Leah. She got ill and has had not only mito testing but other testing done and
    Message 1 of 11 , Feb 20, 2013
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      I wanted to let you know we are still figuring out a diagnosis for my daughter, Leah.  She got ill and has had not only mito testing but other testing done and we still aren’t sure what is going on.  She is still considered suspected mito to this day.  She is 15 years old.  One of our old metabolic docs said with Leah it could even be in the center of the nucelus of the mito cell.  And I believe they don’t have testing for that.........yet.  We are blessed that she doesn’t have major health issues so we just go day by day and our main caution is when she has any type of surgery and testing that would involve fasting.  
       
      We see our metabolic doctor yearly and go over things and see what new testing is out there not only for mito but for other disabilities.  My husband and I feel that we would change nothing in our treatment for our daughter unless some thing medically necessary like meds would be needed to control something.  We educate her teachers and the school staff on heat and cold issues and other things and plug along.
       
      In fact, even though we are concerned about her body temps; we are going to have her go skiing for the first time in a special sled.  We will take precautions but we want her to enjoy life.
       
      Take care,
       
      Lisa Nerenhausen
      mom to Leah
       
      Sent: Tuesday, February 19, 2013 11:45 AM
      Subject: [Mito] Re: Emily and baby Henry's family
       
       

      Hi Emily and Baby Henry's family!
      I'm sorry you are going through this, but there is a great support network within the mito community.  I am still in the "suspected mito" category, as mine has not been discovered yet.  I became very ill 4 years ago, but it took nearly 2 years to even get that part of a diagnosis.  I've not had a muscle biopsy, as Dr. Bruce Cohen, one of the top mito guys, said if it hasn't been discovered yet that test wouldn't be too helpful for me.  I had a bunch of labwork done and those results point toward mito; for now that is what we go with and treat the secondary heart and energy problems. I also take several of the mito supplements (vit D3, n-acetyl cysteine, alpha liopic acid, etc).  If you haven't yet, I'd look into seeing one of the top mito docs.  I don't know where you live, but I have heard great things about Dr. Kendall (somewhere down south), Dr, Cohen is at Akron, OH, as well as CHOP (Philly).  CHOP recently created a new type of mito testing, which I am in the process of looking into myself.  Good luck to you both!
       
      Karin L. Bernard

       
    • Emily
      Hi Karin. Can you elaborate on the blood work the md took that point to Mito? Thanks for responding. ... From: Karin Bernard Sent: 2/19/2013 7:03 PM To:
      Message 2 of 11 , Feb 21, 2013
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        Hi Karin. Can you elaborate on the blood work the md took that point to Mito? Thanks for responding.

        From: Karin Bernard
        Sent: 2/19/2013 7:03 PM
        To: Mito@yahoogroups.com
        Subject: [Mito] Re: Emily and baby Henry's family

         

        Hi Emily and Baby Henry's family!
        I'm sorry you are going through this, but there is a great support network within the mito community.  I am still in the "suspected mito" category, as mine has not been discovered yet.  I became very ill 4 years ago, but it took nearly 2 years to even get that part of a diagnosis.  I've not had a muscle biopsy, as Dr. Bruce Cohen, one of the top mito guys, said if it hasn't been discovered yet that test wouldn't be too helpful for me.  I had a bunch of labwork done and those results point toward mito; for now that is what we go with and treat the secondary heart and energy problems. I also take several of the mito supplements (vit D3, n-acetyl cysteine, alpha liopic acid, etc).  If you haven't yet, I'd look into seeing one of the top mito docs.  I don't know where you live, but I have heard great things about Dr. Kendall (somewhere down south), Dr, Cohen is at Akron, OH, as well as CHOP (Philly).  CHOP recently created a new type of mito testing, which I am in the process of looking into myself.  Good luck to you both!
         
        Karin L. Bernard


      • Emily
        Joel, wow I am so sorry you had a lab result out there hanging out kinda lost in your file that nobody took a second glance at. After the muscle biopsy did you
        Message 3 of 11 , Feb 21, 2013
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          Joel, wow I am so sorry you had a lab result out there hanging out kinda lost in your file that nobody took a second glance at. After the muscle biopsy did you get you diagnosis of  MERRF? My daughter had ragged red fibers from her muscle biopsy too but with this they only "suspect" mito. I do not know any other muscle diseases that exhibit RRF. I have searched but found nothing.

          From: joel westbrook
          Sent: 2/20/2013 2:09 PM
          To: mito@yahoogroups.com
          Subject: RE: [Mito] Re: Emily and baby Henry's family

           

          I'm Joel Westbrook in Colorado. I am an adult MERRF (mito). My blood work showed elevated pyruvate (?) when I first got sick in 2007. It was over 2 years and 5 neurologists before Dr. Smith in Pueblo, Colorado saw me and thought it was significant. I won't mention the nationally recognized center that completely blew it off. Dr. Smith did the biopsy which showed the ragged red fibers and clumping. My symptoms are mild (after the first 2 years) so my treatment is small. If there is a study being done, I'd like to hear about it, not that I need it, but I'd like to be able to aid research. The kids I've met at support group are precious, I'd like to contribute to present and future treatment options, so theirs and their families lives might have more hope.



          To: Mito@yahoogroups.com
          From: klbernard@...
          Date: Tue, 19 Feb 2013 09:45:21 -0800
          Subject: [Mito] Re: Emily and baby Henry's family

           

          Hi Emily and Baby Henry's family!
          I'm sorry you are going through this, but there is a great support network within the mito community.  I am still in the "suspected mito" category, as mine has not been discovered yet.  I became very ill 4 years ago, but it took nearly 2 years to even get that part of a diagnosis.  I've not had a muscle biopsy, as Dr. Bruce Cohen, one of the top mito guys, said if it hasn't been discovered yet that test wouldn't be too helpful for me.  I had a bunch of labwork done and those results point toward mito; for now that is what we go with and treat the secondary heart and energy problems. I also take several of the mito supplements (vit D3, n-acetyl cysteine, alpha liopic acid, etc).  If you haven't yet, I'd look into seeing one of the top mito docs.  I don't know where you live, but I have heard great things about Dr. Kendall (somewhere down south), Dr, Cohen is at Akron, OH, as well as CHOP (Philly).  CHOP recently created a new type of mito testing, which I am in the process of looking into myself.  Good luck to you both!
           
          Karin L. Bernard



        • Emily
          Leah, how long have you been in the suspected Mito stage? So it sounds like even with the suspicion of Mito you take all the precautions of mito. If you don t
          Message 4 of 11 , Feb 21, 2013
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            Leah, how long have you been in the suspected Mito stage? So it sounds like even with the suspicion of Mito you take all the precautions of mito. If you don't mind, can you elaborate on your daughters health issues? You said she got ill. What do you mean by that? Thanks

            From: Lisa Nerenhausen
            Sent: 2/20/2013 6:04 PM
            To: Mito@yahoogroups.com
            Subject: Re: [Mito] Re: Emily and baby Henry's family

             

            I wanted to let you know we are still figuring out a diagnosis for my daughter, Leah.  She got ill and has had not only mito testing but other testing done and we still aren’t sure what is going on.  She is still considered suspected mito to this day.  She is 15 years old.  One of our old metabolic docs said with Leah it could even be in the center of the nucelus of the mito cell.  And I believe they don’t have testing for that.........yet.  We are blessed that she doesn’t have major health issues so we just go day by day and our main caution is when she has any type of surgery and testing that would involve fasting.  
             
            We see our metabolic doctor yearly and go over things and see what new testing is out there not only for mito but for other disabilities.  My husband and I feel that we would change nothing in our treatment for our daughter unless some thing medically necessary like meds would be needed to control something.  We educate her teachers and the school staff on heat and cold issues and other things and plug along.
             
            In fact, even though we are concerned about her body temps; we are going to have her go skiing for the first time in a special sled.  We will take precautions but we want her to enjoy life.
             
            Take care,
             
            Lisa Nerenhausen
            mom to Leah
             
            Sent: Tuesday, February 19, 2013 11:45 AM
            Subject: [Mito] Re: Emily and baby Henry's family
             
             

            Hi Emily and Baby Henry's family!
            I'm sorry you are going through this, but there is a great support network within the mito community.  I am still in the "suspected mito" category, as mine has not been discovered yet.  I became very ill 4 years ago, but it took nearly 2 years to even get that part of a diagnosis.  I've not had a muscle biopsy, as Dr. Bruce Cohen, one of the top mito guys, said if it hasn't been discovered yet that test wouldn't be too helpful for me.  I had a bunch of labwork done and those results point toward mito; for now that is what we go with and treat the secondary heart and energy problems. I also take several of the mito supplements (vit D3, n-acetyl cysteine, alpha liopic acid, etc).  If you haven't yet, I'd look into seeing one of the top mito docs.  I don't know where you live, but I have heard great things about Dr. Kendall (somewhere down south), Dr, Cohen is at Akron, OH, as well as CHOP (Philly).  CHOP recently created a new type of mito testing, which I am in the process of looking into myself.  Good luck to you both!
             
            Karin L. Bernard

             

          • Emily
            Message 5 of 11 , Feb 21, 2013
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              --- In Mito@yahoogroups.com, Emily <wemma18@...> wrote:
              >
              > Lisa how long have you been in the suspected Mito stage? So it sounds like even with the suspicion of Mito you take all the precautions of mito. If you don't mind, can you elaborate on your daughters health issues? You said she got ill. What do you mean by that? Thanks
              >
              > -----Original Message-----
              > From: Lisa Nerenhausen
              > Sent: 2/20/2013 6:04 PM
              > To: Mito@yahoogroups.com
              > Subject: Re: [Mito] Re: Emily and baby Henry's family
              >
              >
              >
              >
              >
              >
              >
              >
              >
              > I wanted to let you know we are still figuring out a diagnosis for my daughter, Leah. She got ill and has had not only mito testing but other testing done and we still aren’t sure what is going on. She is still considered suspected mito to this day. She is 15 years old. One of our old metabolic docs said with Leah it could even be in the center of the nucelus of the mito cell. And I believe they don’t have testing for that.........yet. We are blessed that she doesn’t have major health issues so we just go day by day and our main caution is when she has any type of surgery and testing that would involve fasting.
              >
              >
              >
              > We see our metabolic doctor yearly and go over things and see what new testing is out there not only for mito but for other disabilities. My husband and I feel that we would change nothing in our treatment for our daughter unless some thing medically necessary like meds would be needed to control something. We educate her teachers and the school staff on heat and cold issues and other things and plug along.
              >
              >
              >
              > In fact, even though we are concerned about her body temps; we are going to have her go skiing for the first time in a special sled. We will take precautions but we want her to enjoy life.
              >
              >
              >
              > Take care,
              >
              >
              >
              > Lisa Nerenhausen
              >
              > mom to Leah
              >
              >
              >
              >
              >
              >
              > From: Karin Bernard
              >
              > Sent: Tuesday, February 19, 2013 11:45 AM
              >
              > To: Mito@yahoogroups.com
              >
              > Subject: [Mito] Re: Emily and baby Henry's family
              >
              >
              >
              >
              >
              >
              >
              >
              > Hi Emily and Baby Henry's family!
              >
              > I'm sorry you are going through this, but there is a great support network within the mito community. I am still in the "suspected mito" category, as mine has not been discovered yet. I became very ill 4 years ago, but it took nearly 2 years to even get that part of a diagnosis. I've not had a muscle biopsy, as Dr. Bruce Cohen, one of the top mito guys, said if it hasn't been discovered yet that test wouldn't be too helpful for me. I had a bunch of labwork done and those results point toward mito; for now that is what we go with and treat the secondary heart and energy problems. I also take several of the mito supplements (vit D3, n-acetyl cysteine, alpha liopic acid, etc). If you haven't yet, I'd look into seeing one of the top mito docs. I don't know where you live, but I have heard great things about Dr. Kendall (somewhere down south), Dr, Cohen is at Akron, OH, as well as CHOP (Philly). CHOP recently created a new type of mito testing, which I am in the process of looking into myself. Good luck to you both!
              >
              >
              >
              >
              >
              >
              >
              > Karin L. Bernard
              >
              >
              >
              >
              >
              >
              >
              >
              > <!-- #ygrp-mkp { border: 1px solid #d8d8d8; font-family: Arial; margin: 10px 0; padding: 0 10px; } #ygrp-mkp hr { border: 1px solid #d8d8d8; } #ygrp-mkp #hd { color: #628c2a; font-size: 85%; font-weight: 700; line-height: 122%; margin: 10px 0; } #ygrp-mkp #ads { margin-bottom: 10px; } #ygrp-mkp .ad { padding: 0 0; } #ygrp-mkp .ad p { margin: 0; } #ygrp-mkp .ad a { color: #0000ff; text-decoration: none; } #ygrp-sponsor #ygrp-lc { font-family: Arial; } #ygrp-sponsor #ygrp-lc #hd { margin: 10px 0px; font-weight: 700; font-size: 78%; line-height: 122%; } #ygrp-sponsor #ygrp-lc .ad { margin-bottom: 10px; padding: 0 0; } #actions { font-family: Verdana; font-size: 11px; padding: 10px 0; } #activity { background-color: #e0ecee; float: left; font-family: Verdana; font-size: 10px; padding: 10px; } #activity span { font-weight: 700; } #activity span:first-child { text-transform: uppercase; } #activity span a { color: #5085b6; text-decoration: none; } #activity span span { color: #ff7900; } #activity span .underline { text-decoration: underline; } .attach { clear: both; display: table; font-family: Arial; font-size: 12px; padding: 10px 0; width: 400px; } .attach div a { text-decoration: none; } .attach img { border: none; padding-right: 5px; } .attach label { display: block; margin-bottom: 5px; } .attach label a { text-decoration: none; } blockquote { margin: 0 0 0 4px; } .bold { font-family: Arial; font-size: 13px; font-weight: 700; } .bold a { text-decoration: none; } dd.last p a { font-family: Verdana; font-weight: 700; } dd.last p span { margin-right: 10px; font-family: Verdana; font-weight: 700; } dd.last p span.yshortcuts { margin-right: 0; } div.attach-table div div a { text-decoration: none; } div.attach-table { width: 400px; } div.file-title a, div.file-title a:active, div.file-title a:hover, div.file-title a:visited { text-decoration: none; } div.photo-title a, div.photo-title a:active, div.photo-title a:hover, div.photo-title a:visited { text-decoration: none; } div#ygrp-mlmsg #ygrp-msg p a span.yshortcuts { font-family: Verdana; font-size: 10px; font-weight: normal; } .green { color: #628c2a; } .MsoNormal { margin: 0 0 0 0; } o { font-size: 0; } #photos div { float: left; width: 72px; } #photos div div { border: 1px solid #666666; height: 62px; overflow: hidden; width: 62px; } #photos div label { color: #666666; font-size: 10px; overflow: hidden; text-align: center; white-space: nowrap; width: 64px; } #reco-category { font-size: 77%; } #reco-desc { font-size: 77%; } .replbq { margin: 4px; } #ygrp-actbar div a:first-child { /* border-right: 0px solid #000;*/ margin-right: 2px; padding-right: 5px; } #ygrp-mlmsg { font-size: 13px; font-family: Arial, helvetica,clean, sans-serif; *font-size: small; *font: x-small; } #ygrp-mlmsg table { font-size: inherit; font: 100%; } #ygrp-mlmsg select, input, textarea { font: 99% Arial, Helvetica, clean, sans-serif; } #ygrp-mlmsg pre, code { font:115% monospace; *font-size:100%; } #ygrp-mlmsg * { line-height: 1.22em; } #ygrp-mlmsg #logo { padding-bottom: 10px; } #ygrp-msg p a { font-family: Verdana; } #ygrp-msg p#attach-count span { color: #1E66AE; font-weight: 700; } #ygrp-reco #reco-head { color: #ff7900; font-weight: 700; } #ygrp-reco { margin-bottom: 20px; padding: 0px; } #ygrp-sponsor #ov li a { font-size: 130%; text-decoration: none; } #ygrp-sponsor #ov li { font-size: 77%; list-style-type: square; padding: 6px 0; } #ygrp-sponsor #ov ul { margin: 0; padding: 0 0 0 8px; } #ygrp-text { font-family: Georgia; } #ygrp-text p { margin: 0 0 1em 0; } #ygrp-text tt { font-size: 120%; } #ygrp-vital ul li:last-child { border-right: none !important; } -->
              >
            • Emily
              sorry Lisa, I read you and your daughters name wrong. Tell me more about Leah please!
              Message 6 of 11 , Feb 21, 2013
              • 0 Attachment
                sorry Lisa, I read you and your daughters name wrong. Tell me more about Leah please!

                --- In Mito@yahoogroups.com, Emily <wemma18@...> wrote:
                >
                > Leah, how long have you been in the suspected Mito stage? So it sounds like even with the suspicion of Mito you take all the precautions of mito. If you don't mind, can you elaborate on your daughters health issues? You said she got ill. What do you mean by that? Thanks
                >
                > -----Original Message-----
                > From: Lisa Nerenhausen
                > Sent: 2/20/2013 6:04 PM
                > To: Mito@yahoogroups.com
                > Subject: Re: [Mito] Re: Emily and baby Henry's family
                >
                >
                >
                >
                >
                >
                >
                >
                >
                > I wanted to let you know we are still figuring out a diagnosis for my daughter, Leah. She got ill and has had not only mito testing but other testing done and we still aren’t sure what is going on. She is still considered suspected mito to this day. She is 15 years old. One of our old metabolic docs said with Leah it could even be in the center of the nucelus of the mito cell. And I believe they don’t have testing for that.........yet. We are blessed that she doesn’t have major health issues so we just go day by day and our main caution is when she has any type of surgery and testing that would involve fasting.
                >
                >
                >
                > We see our metabolic doctor yearly and go over things and see what new testing is out there not only for mito but for other disabilities. My husband and I feel that we would change nothing in our treatment for our daughter unless some thing medically necessary like meds would be needed to control something. We educate her teachers and the school staff on heat and cold issues and other things and plug along.
                >
                >
                >
                > In fact, even though we are concerned about her body temps; we are going to have her go skiing for the first time in a special sled. We will take precautions but we want her to enjoy life.
                >
                >
                >
                > Take care,
                >
                >
                >
                > Lisa Nerenhausen
                >
                > mom to Leah
                >
                >
                >
                >
                >
                >
                > From: Karin Bernard
                >
                > Sent: Tuesday, February 19, 2013 11:45 AM
                >
                > To: Mito@yahoogroups.com
                >
                > Subject: [Mito] Re: Emily and baby Henry's family
                >
                >
                >
                >
                >
                >
                >
                >
                > Hi Emily and Baby Henry's family!
                >
                > I'm sorry you are going through this, but there is a great support network within the mito community. I am still in the "suspected mito" category, as mine has not been discovered yet. I became very ill 4 years ago, but it took nearly 2 years to even get that part of a diagnosis. I've not had a muscle biopsy, as Dr. Bruce Cohen, one of the top mito guys, said if it hasn't been discovered yet that test wouldn't be too helpful for me. I had a bunch of labwork done and those results point toward mito; for now that is what we go with and treat the secondary heart and energy problems. I also take several of the mito supplements (vit D3, n-acetyl cysteine, alpha liopic acid, etc). If you haven't yet, I'd look into seeing one of the top mito docs. I don't know where you live, but I have heard great things about Dr. Kendall (somewhere down south), Dr, Cohen is at Akron, OH, as well as CHOP (Philly). CHOP recently created a new type of mito testing, which I am in the process of looking into myself. Good luck to you both!
                >
                >
                >
                >
                >
                >
                >
                > Karin L. Bernard
                >
                >
                >
                >
                >
                >
                >
                >
                > <!-- #ygrp-mkp { border: 1px solid #d8d8d8; font-family: Arial; margin: 10px 0; padding: 0 10px; } #ygrp-mkp hr { border: 1px solid #d8d8d8; } #ygrp-mkp #hd { color: #628c2a; font-size: 85%; font-weight: 700; line-height: 122%; margin: 10px 0; } #ygrp-mkp #ads { margin-bottom: 10px; } #ygrp-mkp .ad { padding: 0 0; } #ygrp-mkp .ad p { margin: 0; } #ygrp-mkp .ad a { color: #0000ff; text-decoration: none; } #ygrp-sponsor #ygrp-lc { font-family: Arial; } #ygrp-sponsor #ygrp-lc #hd { margin: 10px 0px; font-weight: 700; font-size: 78%; line-height: 122%; } #ygrp-sponsor #ygrp-lc .ad { margin-bottom: 10px; padding: 0 0; } #actions { font-family: Verdana; font-size: 11px; padding: 10px 0; } #activity { background-color: #e0ecee; float: left; font-family: Verdana; font-size: 10px; padding: 10px; } #activity span { font-weight: 700; } #activity span:first-child { text-transform: uppercase; } #activity span a { color: #5085b6; text-decoration: none; } #activity span span { color: #ff7900; } #activity span .underline { text-decoration: underline; } .attach { clear: both; display: table; font-family: Arial; font-size: 12px; padding: 10px 0; width: 400px; } .attach div a { text-decoration: none; } .attach img { border: none; padding-right: 5px; } .attach label { display: block; margin-bottom: 5px; } .attach label a { text-decoration: none; } blockquote { margin: 0 0 0 4px; } .bold { font-family: Arial; font-size: 13px; font-weight: 700; } .bold a { text-decoration: none; } dd.last p a { font-family: Verdana; font-weight: 700; } dd.last p span { margin-right: 10px; font-family: Verdana; font-weight: 700; } dd.last p span.yshortcuts { margin-right: 0; } div.attach-table div div a { text-decoration: none; } div.attach-table { width: 400px; } div.file-title a, div.file-title a:active, div.file-title a:hover, div.file-title a:visited { text-decoration: none; } div.photo-title a, div.photo-title a:active, div.photo-title a:hover, div.photo-title a:visited { text-decoration: none; } div#ygrp-mlmsg #ygrp-msg p a span.yshortcuts { font-family: Verdana; font-size: 10px; font-weight: normal; } .green { color: #628c2a; } .MsoNormal { margin: 0 0 0 0; } o { font-size: 0; } #photos div { float: left; width: 72px; } #photos div div { border: 1px solid #666666; height: 62px; overflow: hidden; width: 62px; } #photos div label { color: #666666; font-size: 10px; overflow: hidden; text-align: center; white-space: nowrap; width: 64px; } #reco-category { font-size: 77%; } #reco-desc { font-size: 77%; } .replbq { margin: 4px; } #ygrp-actbar div a:first-child { /* border-right: 0px solid #000;*/ margin-right: 2px; padding-right: 5px; } #ygrp-mlmsg { font-size: 13px; font-family: Arial, helvetica,clean, sans-serif; *font-size: small; *font: x-small; } #ygrp-mlmsg table { font-size: inherit; font: 100%; } #ygrp-mlmsg select, input, textarea { font: 99% Arial, Helvetica, clean, sans-serif; } #ygrp-mlmsg pre, code { font:115% monospace; *font-size:100%; } #ygrp-mlmsg * { line-height: 1.22em; } #ygrp-mlmsg #logo { padding-bottom: 10px; } #ygrp-msg p a { font-family: Verdana; } #ygrp-msg p#attach-count span { color: #1E66AE; font-weight: 700; } #ygrp-reco #reco-head { color: #ff7900; font-weight: 700; } #ygrp-reco { margin-bottom: 20px; padding: 0px; } #ygrp-sponsor #ov li a { font-size: 130%; text-decoration: none; } #ygrp-sponsor #ov li { font-size: 77%; list-style-type: square; padding: 6px 0; } #ygrp-sponsor #ov ul { margin: 0; padding: 0 0 0 8px; } #ygrp-text { font-family: Georgia; } #ygrp-text p { margin: 0 0 1em 0; } #ygrp-text tt { font-size: 120%; } #ygrp-vital ul li:last-child { border-right: none !important; } -->
                >
              • Lisa Nerenhausen
                Hi I will write later. I’ve been reading your emails and want to reply and went on your blog to find out more about your family. I am off to clean a couple
                Message 7 of 11 , Feb 22, 2013
                • 0 Attachment
                  Hi I will write later.  I’ve been reading your emails and want to reply and went on your blog to find out more about your family.  I am off to clean a couple of houses to day and then will go in more detail about Leah and our road we’ve been on for 14 almost 15 years.
                   
                  Lisa Nerenhausen
                   
                  From: Emily
                  Sent: Friday, February 22, 2013 1:42 AM
                  Subject: [Mito] Re: Emily and baby Henry's family
                   
                   

                  sorry Lisa, I read you and your daughters name wrong. Tell me more about Leah please!

                  --- In mailto:Mito%40yahoogroups.com, Emily wrote:

                  >
                  > Leah, how long have you been in the suspected Mito stage?
                  So it sounds like even with the suspicion of Mito you take all the precautions of mito. If you don't mind, can you elaborate on your daughters health issues? You said she got ill. What do you mean by that? Thanks
                  >
                  >
                  -----Original Message-----
                  > From: Lisa Nerenhausen
                  > Sent:
                  2/20/2013 6:04 PM
                  > To:
                  href="mailto:Mito%40yahoogroups.com">mailto:Mito%40yahoogroups.com
                  >
                  Subject: Re: [Mito] Re: Emily and baby Henry's family
                  >
                  >
                  >
                  >
                  >
                  >
                  >
                  >
                  >
                  > I wanted to let
                  you know we are still figuring out a diagnosis for my daughter, Leah. She got ill and has had not only mito testing but other testing done and we still aren’t sure what is going on. She is still considered suspected mito to this day. She is 15 years old. One of our old metabolic docs said with Leah it could even be in the center of the nucelus of the mito cell. And I believe they don’t have testing for that.........yet. We are blessed that she doesn’t have major health issues so we just go day by day and our main caution is when she has any type of surgery and testing that would involve fasting.
                  >
                  >
                  >
                  > We see our metabolic doctor yearly and go over things
                  and see what new testing is out there not only for mito but for other disabilities. My husband and I feel that we would change nothing in our treatment for our daughter unless some thing medically necessary like meds would be needed to control something. We educate her teachers and the school staff on heat and cold issues and other things and plug along.
                  >
                  >
                  >
                  > In fact, even though we are concerned about her body temps; we are
                  going to have her go skiing for the first time in a special sled. We will take precautions but we want her to enjoy life.
                  >
                  >
                  >
                  >
                  Take care,
                  >
                  >
                  >
                  > Lisa Nerenhausen
                  >
                  >
                  mom to Leah
                  >
                  >
                  >
                  >
                  >
                  >
                  > From:
                  Karin Bernard
                  >
                  > Sent: Tuesday, February 19, 2013 11:45
                  AM
                  >
                  > To:
                  href="mailto:Mito%40yahoogroups.com">mailto:Mito%40yahoogroups.com
                  >
                  > Subject: [Mito] Re: Emily and baby Henry's family
                  >
                  >
                  >
                  >
                  >
                  >
                  >
                  >
                  > Hi Emily and Baby
                  Henry's family!
                  >
                  > I'm sorry you are going through this, but there
                  is a great support network within the mito community. I am still in the "suspected mito" category, as mine has not been discovered yet. I became very ill 4 years ago, but it took nearly 2 years to even get that part of a diagnosis. I've not had a muscle biopsy, as Dr. Bruce Cohen, one of the top mito guys, said if it hasn't been discovered yet that test wouldn't be too helpful for me. I had a bunch of labwork done and those results point toward mito; for now that is what we go with and treat the secondary heart and energy problems. I also take several of the mito supplements (vit D3, n-acetyl cysteine, alpha liopic acid, etc). If you haven't yet, I'd look into seeing one of the top mito docs. I don't know where you live, but I have heard great things about Dr. Kendall (somewhere down south), Dr, Cohen is at Akron, OH, as well as CHOP (Philly). CHOP recently created a new type of mito testing, which I am in the process of looking into myself. Good luck to you both!
                  >
                  >
                  >
                  >
                  >
                  >
                  >
                  > Karin L. Bernard
                  >
                  >
                  >
                  >
                  >
                  >
                  >
                  >
                  >
                  >

                • Lisa Nerenhausen
                  I am going to forward my letter to some one else to you because I typed a lot of information and hopefully it will shed some light for you. I’m finding
                  Message 8 of 11 , Feb 22, 2013
                  • 0 Attachment
                    I am going to forward my letter to some one else to you because I typed a lot of information and hopefully it will shed some light for you.  I’m finding I’ll need to look up old doctor notes from when she was first on the road to seeing doctors.  As for her initial illness; she had a virus with a high fever for an infant 101 degrees that set things in motion.  Nothing else a fever.  So we started on this road when she was about 9 months old and had testing started when she was in the hospital for cleft palate surgery.  But things were odd when she was a baby and the city nurse was concerned because she wasn’t meeting her milestones.  Like raising her head, and rolling over.  But as a mom I was not wanting to admit something was wrong.  I felt all babies develop at different times and may be with her being small she wasn’t strong enough.  Well little did I know where we would be today.  In a wheelchair, full spinal fusion, nonverbal and a few other things. 
                     
                    Hope this letter and the other one I will forward to you if you want to send me your private email.  My email is lnerenhausen@...
                     
                    Thanks,
                     
                    Lisa
                     
                    From: Emily
                    Sent: Thursday, February 21, 2013 3:13 AM
                    Subject: RE: [Mito] Re: Emily and baby Henry's family
                     
                     

                    Leah, how long have you been in the suspected Mito stage? So it sounds like even with the suspicion of Mito you take all the precautions of mito. If you don't mind, can you elaborate on your daughters health issues? You said she got ill. What do you mean by that? Thanks

                    From: Lisa Nerenhausen
                    Sent: 2/20/2013 6:04 PM
                    To: Mito@yahoogroups.com
                    Subject: Re: [Mito] Re: Emily and baby Henry's family

                     

                    I wanted to let you know we are still figuring out a diagnosis for my daughter, Leah.  She got ill and has had not only mito testing but other testing done and we still aren’t sure what is going on.  She is still considered suspected mito to this day.  She is 15 years old.  One of our old metabolic docs said with Leah it could even be in the center of the nucelus of the mito cell.  And I believe they don’t have testing for that.........yet.  We are blessed that she doesn’t have major health issues so we just go day by day and our main caution is when she has any type of surgery and testing that would involve fasting.  
                     
                    We see our metabolic doctor yearly and go over things and see what new testing is out there not only for mito but for other disabilities.  My husband and I feel that we would change nothing in our treatment for our daughter unless some thing medically necessary like meds would be needed to control something.  We educate her teachers and the school staff on heat and cold issues and other things and plug along.
                     
                    In fact, even though we are concerned about her body temps; we are going to have her go skiing for the first time in a special sled.  We will take precautions but we want her to enjoy life.
                     
                    Take care,
                     
                    Lisa Nerenhausen
                    mom to Leah
                     
                    Sent: Tuesday, February 19, 2013 11:45 AM
                    Subject: [Mito] Re: Emily and baby Henry's family
                     
                     

                    Hi Emily and Baby Henry's family!
                    I'm sorry you are going through this, but there is a great support network within the mito community.  I am still in the "suspected mito" category, as mine has not been discovered yet.  I became very ill 4 years ago, but it took nearly 2 years to even get that part of a diagnosis.  I've not had a muscle biopsy, as Dr. Bruce Cohen, one of the top mito guys, said if it hasn't been discovered yet that test wouldn't be too helpful for me.  I had a bunch of labwork done and those results point toward mito; for now that is what we go with and treat the secondary heart and energy problems. I also take several of the mito supplements (vit D3, n-acetyl cysteine, alpha liopic acid, etc).  If you haven't yet, I'd look into seeing one of the top mito docs.  I don't know where you live, but I have heard great things about Dr. Kendall (somewhere down south), Dr, Cohen is at Akron, OH, as well as CHOP (Philly).  CHOP recently created a new type of mito testing, which I am in the process of looking into myself.  Good luck to you both!
                     
                    Karin L. Bernard

                     
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