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Re: [Mito] Jennifer- MELAS

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  • Chris and Jennifer Lawton
    Thanks Darla, I would appreciate this. So often when I read your e-mails to others they sound so much like something I could have written about my own two
    Message 1 of 4 , Jan 30, 1996
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      Thanks Darla, I would appreciate this.  So often when I read your e-mails to others they sound so much like something I could have written about my own two girls. I also believe that my daughter Sandra-Kay would not be here if she had been started on the Mito cocktail.
       
      Our children all have dysautonomia in common and I feel they may respond to the Mito cocktail due to this.
      Thanks again Darla,
      Hugs,
      Jennifer.
      ----- Original Message -----
      Sent: Thursday, March 31, 2005 2:05 PM
      Subject: Re: [Mito] Jennifer- MELAS

           I will have to do some research to figure out which site I read it at.
      It was quite a while ago and I read tons of info from as many places as I
      could.  If I find it I will let you know.  I do remember reading something
      about 80-90% accuracy and thus the other 10-20% have to rely only on
      symptoms and other labs.
           Our girls definitely show lots of abnormal metabolic labs that indicate
      Mito. Several acid levels off (amino, pyruvic...), metabolic acidosis
      issues, lactic acidosis, low carnitine levels, low COQ10 levels, along with
      tons of the symptoms you see in Mito (you can read lots in my signature).
      Dr. Whiteman believes our family is dealing with a metabolic issue, most
      likely Mitochondrial and treats the girls accordingly.  They both take the
      cocktail even though their biopsies only indicate a strong possibility
      rather than "proof."  The cocktail has done wonders for Asenath and we can
      only imagine it is also what is holding Zipporrah together.  I know that if
      she hadn't been helped as much as she has been in her short life that she
      wouldn't be here.  If we didn't have Asenath first and learn from her...
      Zipporrah has shown things so much earlier and needed the G-tube by 6
      months.  Asenath really should have received one at 1 1/2 years, but didn't
      till she was almost 3.
          Sorry I am not too much help with specifics on MELAS right this minute.
      SOMEWHERE in my bedroom I have lots of good web pages printed on paper with
      loads of info.  Maybe others can help here too. :)

      See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org (a
      photo look into Mito)
      Darla: mommy to
      Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,
      hypotonicity, disautonomia, SID, global delays, cyclic vomiting, bladder
      issues, some wheelchair use, eye issues, gastric emptying issues...
      Zipporrah (17 months) Mito, strokes, neuro-motor planning, SID, GERD,
      dysphasia, G-tube fed, speech delays, extreme fatigue, aberrant subclavian
      artery, disautonomia, hypertonicity, migraines, possible seizures, dumping
      syndrome, iron deficiency...
      Luke (17)migraines, sensory issues, & some evidence of SLE's...
      Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), Marquis (3)
      Joey (15 months) with hydrocephalus, dysgenesis of the corpus callosum,
      encephalomalacia & leukomalacia, G-tube, GERD, immobile, severe dev. delays,
      left hemiplegia (arm)...
      Christina (15 months) SID, dev. delays, right hemiparesis issues...


      ----- Original Message -----
      From: "Chris and Jennifer Lawton" <c&j.lawton@...>
      To: <Mito@yahoogroups.com>
      Sent: Tuesday, January 30, 1996 12:38 AM
      Subject: Re: [Mito] Re: Barb- MELAS


      Darla and Barb,

      Would you mind sharing with me anything that you may learn re suspected
      MELAS and negative blood work for such.
      Darla, you mention that you have read on the Internet that sometimes a
      person can have MELAS and still show negative test results. Can you tell me
      where you read this please.

      Like your child Darla my two daughter's appear to have medical issues due to
      MITO but blood work says negative so the Doctor's are not interested
      although they can give us no other explanation for their unusual medical
      issues.

      Thanks for your help.
      Jennifer.
        ----- Original Message -----
        From: Darla Klein
        To: Mito@yahoogroups.com
        Sent: Thursday, March 31, 2005 6:38 AM
        Subject: [Mito] Re: Barb- MELAS


             Our girls match up with MELAS the most as well, but the blood work
        specifically done to show whether a child has it or not says negative for
        them.  Have you done the blood work on Matt and if so what did it show?
        From reading on the internet I have learned that sometimes a person can
      have
        MELAS and still show negative test results, but our neuro just ruled it
      out
        due to the results we received, as did Dr. Whiteman (or at least it seems
        so).  I would love to hear more about not only why the docs believe Matt
      has
        MELAS, but also what testing he has had for it and what the plan of action
        is to diagnose it if the labs don't prove it.

        See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org (a
        photo look into Mito)
        Darla: mommy to
        Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,
        hypotonicity, disautonomia, SID, global delays, cyclic vomiting, bladder
        issues, some wheelchair use, eye issues, gastric emptying issues...
        Zipporrah (17 months) Mito, strokes, neuro-motor planning, SID, GERD,
        dysphasia, G-tube fed, speech delays, extreme fatigue, aberrant subclavian
        artery, disautonomia, hypertonicity, migraines, possible seizures, dumping
        syndrome, iron deficiency...
        Luke (17)migraines, sensory issues, & some evidence of SLE's...
        Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), Marquis (3)
        Joey (15 months) with hydrocephalus, dysgenesis of the corpus callosum,
        encephalomalacia & leukomalacia, G-tube, GERD, immobile, severe dev.
      delays,
        left hemiplegia (arm)...
        Christina (15 months) SID, dev. delays, right hemiparesis issues...


        ----- Original Message -----
        From: "matts_mom96" <matts_mom96@...>
        To: <Mito@yahoogroups.com>
        Sent: Wednesday, March 30, 2005 12:12 AM
        Subject: [Mito] Re: Son with IS


        >
        >
        > HI Stephanie, my son Matt started with infantile spasms when he was
        > about a month old, i was told by the ped at the time not to worry,
        > that Matt was a premie and would be fine.  At age 15 months old Matt
        > had his 1st gran mal seizure, and the seizures became daily. and
        > that got the ball rolling (so to speak), we went to see the neuro,
        > (i figured i would be told my son had epilepsy and that would be
        > that), they did a EEG, and it was abnormal, from there they ordered
        > an MRI, and that came back with white matter lesions.  At this time
        > he was developmentally delayed, low muscle tone, fatigue, abnormal
        > gait, gerd, seizures.  When we got the results we were told it wasnt
        > just epilepsy, Matt was started on seizure meds and it helped, but
        > more testing was needed, to find out what was going on, also at this
        > time Matts gerd was so severe, that he stopped eating and was losing
        > so much weight, he was diagnosed with failure to thrive and give ng
        > tube, and several months later when feeding therapy didnt help he
        > had a g-tube put in which we still use today (Matt is now 8 years
        > old).  Matts neuro did blood work, which made him suspect mito, and
        > Matt had a muscle biopsy done.   This confirmed mito, they believed
        > at the time (Matt was age 2 by now) that this was MERFF, We started
        > therapies (creatine and q-10)  for Matt including OT, PT, Speech and
        > Feeding, behavioral therapies as Matt was diagnosed also with OCD,
        > SID, ADHD by age PDD-autism by age 3.  He was doing great, gaining
        > weight, talking, walking, learning.  Right before he turned 8 years
        > old he started to regress again, he was fatigue after any activity,
        > started with severe muscle spasm, cough varient ashma, and severe
        > migrains, and still incontinent over night,  we went back to the
        > neuro, and he suggest we see a new specialist there a
        > neuro/metobolic specialist whos field is mito.  He started with
        > looking at all of Matts history, and test.  He then examined Matt,
        > we did more blood work, and a another of many MRI's to find MERFF is
        > not his diagnoses, we are now looking into MELAS with complex one,
        > as this is what all the new test is pointing too. WE just had blood
        > drawn a mtdna blood test, and hopefully that will give us answers,
        > if not we will have to do another muscle biopsy.  I hate having him
        > go through all this, and unfortunely my most recent biopsy didnt
        > show which mutation we have (i to have mito), so i just pray we get
        > answers from the mtdna test.  Then they will know how to better
        > treat Matt and hopefully slow down the progession of this disease.
        > Its fustrating, for him and for our family to watch him go through
        > so much, but hes an awesome child, son, brother, nephew, grandchild,
        > friend, boyscout, fisherman, ect... he's living life just like any
        > other kid, cant do all things most kids can do, but he loves doing
        > the things he can!!   Hes loving and compassionate and hes dearly
        > loved!!   he is now included in 3rd grade, (pulled for specials),
        > he'll be 9 in June, no one can tell ya what will happen in the
        > future, so we take the here and now as it is, and we make the most
        > of it each and every day. Matt has also been seizure free for over 2
        > years now, and we are weaning him off of seizure meds.  Look for the
        > silver linings and find joy in everything you do and as Matts neuro
        > told me a long time ago "look what Matt can do today"  and thank God
        > for these support groups!!  Good luck with your son, i hope he
        > doesnt have mito but if he does your in the right place.  Barb
        >
        >
        >
        >
        >
        >
        > Please contact mito-owner@yahoogroups.com with any problems or
      questions.
        > Yahoo! Groups Links
        >
        >
        >
        >
        >
        >
        >
        >


        Please contact mito-owner@yahoogroups.com with any problems or questions.


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    • Chris and Jennifer Lawton
      Thanks for trying so hard Darla. I know what it is like with so much info on so many issues that our children seem to have. I have files everywhere and often
      Message 2 of 4 , Feb 1, 1996
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        Thanks for trying so hard Darla. I know what it is like with so much info on so many issues that our children seem to have. I have files everywhere and often find to so hard to find things that I need.
         
        Thanks anyway,
        Hugs,
        Jennifer.
        ----- Original Message -----
        Sent: Thursday, April 28, 2005 9:41 AM
        Subject: [Mito] Jennifer- MELAS

        I have looked all over and cannot find the site I was trying to find for
        you.  Another possibility might have been that I read it in my daughter's
        lab report from the ones that tested her for the MELAS but not sure.  I hope
        you have been able to get more information from others here and online as
        well though.  Wish I could help you more. :(

        See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org (a
        photo look into Mito)
        Darla



        Please contact mito-owner@yahoogroups.com with any problems or questions.

      • Darla Klein
        I have looked all over and cannot find the site I was trying to find for you. Another possibility might have been that I read it in my daughter s lab report
        Message 3 of 4 , Apr 27 1:41 PM
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          I have looked all over and cannot find the site I was trying to find for
          you. Another possibility might have been that I read it in my daughter's
          lab report from the ones that tested her for the MELAS but not sure. I hope
          you have been able to get more information from others here and online as
          well though. Wish I could help you more. :(

          See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org (a
          photo look into Mito)
          Darla
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