Anya started getting sick around 9am. Unlike the last two episodes, this one was more typical. She hasn't been able to hold anything down all day (and continues as I write this at 11pm), and she has been very lethargic. She was actually up all of last night with a continuously running nose and coughing but she held her food down fine through the night.
So now what... As you can imagine, we are getting more and more frustrated and concerned. We decided today to find a new GI doc that actually doesn't mind doing what he is paid for (sorry I'm a little bitter) Anya has seen countless GI docs at Childrens and they all seem to just give up and blame it on the Mito issue. They might be right but I don't want to assume so and someday have an autopsy prove them wrong.
Their last suggestion months ago, which is where we gave up on them, was to place a J-G tube (or is it G-J, I forget) which is basically like the g-tube she has now but place lower in the digestive track, in the juejunum. This would bypass the stomach altogether. Or to redo her Nissen (re-tighten her esophagus). Either option, in our minds, is not the way to handle it. Sure, we could perhaps even sew her lips shut to stop her vomiting but the underlying issue still remains. Anyway, we got the name of a good doc that reportedly digs and digs until he knows exactly what is wrong.
What else.. Oh yea, we got some of her lab work back for mineral testing in hair samples. We speak with her PCP next week for interpretation. I don't what to say much about it until we know more but the results were abnormal with several elevated heavy metals. This likely indicates her bodies normal function to excrete such metals (which we all do daily) has been compromised. This system of sulfation and methylation is what we been working on with supplements lately.
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