Hello Evan,
I have been reading your thread in "how are you feeling". And you said something that I have only heard recently said by my son's Primary Care Doctor. You sad: "I wonder if I am entirely in position of my wits or is my ammonia level rising again?"
OMG.....my son was just diagnosed with scarring on his liver after an endoscopy. Doctor doesn't know why. My son Josh is 41 and was born with Down's Syndrome, just to give you some background of who he is. Josh has always been an easy to care for child .and extremely healthy individual. Now, at 41 and for the first time in his life, a few months ago he began acting in a very bizarre way. I had no idea what was causing this extreme change in personality. So, about 6 weeks ago, I made an appointment with his primary care doctor. He was acting bizarre ..... taking all his clothes out of his closet - bringing them into the shower and thoroughly wetting the clothes and then putting them back in his closet dripping wet. And he would be really aggressive with me if l tried to intervene. He has never, ever been aggressive in his life.
It took three visits to his doctor and finally more blood work to reveal that he had extremely high levels of ammonia in his body and that affects the brain in negative ways and affects personalities, sometimes to the extreme, which was happening to my son. But just because I now know what is going on, we had to figure out what to do. And, it turned out that he was not emptying his bowels and that is what was causing the rising ammonia levels.....constipation. Even today with medication to help him "poop" his emotional levels of anger and strange behavior pop up ever so often out of the blue.
So, ammonia levels can cause emotional flare up's of anger, fear, confusion and probably more. And this is all new and strange to me. We are waiting now to have a biopsy of his liver. Don't know what caused the scarring on his liver. Josh has spent all of his life healthy until this point in time. And, as his mother I find myself wondering what I missed. But sometimes life just happens.
I have been very stressed the last few months wondering how I can help Josh. But apparently this needs some kind of corrective medical attention - what that might be I hope the biopsy will shed some light on.
I just had to tell you that you are not alone in your struggles. Life can certainly mess up your hopes for a normal life. But, I do wish you strength and patience in what
ever the future holds for you....and for my son Joshua.
You are in my thoughts and prayers. Wishing you strength and hope for the best possible outcome.
