October 25, 2012: After receiving our diagnosis of hepatocutaneous syndrome, we were advised that giving Aminosyn 10% (amino acids in an Intravenous form) can be helpful in getting some improvement for the skin symptoms. We opted to have these administered over 12 hours and spent the night tossing and turning, worrying about our “girl”! They have to place a “central catheter” to get the medication to a large enough vein that it doesn’t cause problems with vein irritation by giving it in a smaller vessel.
We picked her up the next day and began our research on what this disease is about and what treatments and cures exist. Once I realized that Dr. Jean Dodds had had great success with treating liver disease with diet and milk thistle, I knew I could at least treat the underlying liver disease and hopefully give her body time to heal the skin lesions.
It’s funny how having a diagnosis made many of Zoe’s idiosyncrasies now make sense: drooling, head pressing (she would go to a wall or to a piece of furniture and press her head against it), increased thirst, leg weakness and ataxia are all signs of liver disease–and all things that Zoe had begun doing over the last 6 months!
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