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I am back with a ?

twoasone1twoasone1 member
in Special Needs
I used to be on here a lot a couple of years ago.  But then we got my DS1 diagnoses and I found a more specific support group and stopped coming on here that often.  Anyway, I am back.
DS1 has had health issues from the very beginning.  To make a long story short, he was diagnosed with Eosinophilic Esophagitis at 14 months old.  Well, we recently found out that it was a misdiagnoses.  We switched hospitals because the one we were at couldn't figure out all the new symptoms he was having that had nothing to do with his supposed EoE.  
I was wondering if anyone else on here has a child with anything similar to his symptoms?
  • Fatigue
  • muscle pain (especially lower extremities although it seems to be spreading)
  • inability to sweat
  • Rynaurds (sp) syndrome
  • G.I. tract that doesn't work properly (he has a feeding tube)
  • Autonomic dysfunction 
  • Autonomic neuropathy
  • Hypotonic
  • headaches
  • and recently starting to have anger issues (might be due to the pain though)
  • High AST and ALT levels
  • pitichial rashes
We are waiting to see a neurogastroenterologist now but won't get in till October.  I was just wondering if anyone has had a similar experience and could share their story?  I am just so lost and confused right now.  They have started mentioning Mitochondrial disease, and that just scares me more.
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Re: I am back with a ?

  • twoasone1twoasone1 member
    He hasn't had any done.  His neurologist mentioned having it done when we are there next, but she needed to consult with Genetics and find out how to order it or have them do it because it was something she is obviously unfamiliar with.  He is a very 'normal' looking boy.  He was born at a healthy 8lbs 3 oz, but since birth lost a lot of weight and has always been small.  He is almost 4 and wears a 2t sometimes 3t depending on the brand.  His joints are loose (hypotonic) and he stumbles/trips a lot.
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  • twoasone1twoasone1 member
    I will check that out.  Thank you.  He has been really bad this week.  Both of my boys got a virus, but of course DS1 still has it and it is 20 times worse for him than DS2.  
    Thank you again!
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