How are you feeling?

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.
I’m with you (and your Joshua). Just make sure he’s getting enough lactulose to keep him pooping at least twice a day. I literally peed in my clothes drawer while Wendy was calling for an ambulance just, what, two weeks ago now? Yeah that’s the gig, my friend! It ain’t pretty.

I’m beginning to wonder if the mods should break this off into it’s own thread: Currently In Distress!😂
 
I’m with you (and your Joshua). Just make sure he’s getting enough lactulose to keep him pooping at least twice a day. I literally peed in my clothes drawer while Wendy was calling for an ambulance just, what, two weeks ago now? Yeah that’s the gig, my friend! It ain’t pretty.

I’m beginning to wonder if the mods should break this off into it’s own thread: Currently In Distress!😂
 
Yup......Josh is taking lactulose. But, they have more than doubled the dose t0 three times daily. And he is still not pooping regularly. When we see his doctor again tomorrow, I want to have an x-ray done to see if he his impacted.

To make things more interesting, Josh also has NO RECOGNITION OF PAIN. I didn't even know this existed in humans until he was probably about 11 years old. Not aware of pain, not aware of being hot or cold..........just OK!!! Even some of the doctors he has seen have never heard of someone NOT reacting to pain. I shut his hand in the car door once when he was about 3 years old. I was walking with groceries and I looked back. He was just standing by the car with his hand shut fully in the car door - and not reacting. Not crying. Nothing. Not until he was maybe 9 years old I googled "doesn't react to pain" and there it was!!! It is a real thing. So he possibly has had stomach pain, but does not recognize the pain. HOW CRAZY IS THAT!!!
 
Yup......Josh is taking lactulose. But, they have more than doubled the dose t0 three times daily. And he is still not pooping regularly. When we see his doctor again tomorrow, I want to have an x-ray done to see if he his impacted.

To make things more interesting, Josh also has NO RECOGNITION OF PAIN. I didn't even know this existed in humans until he was probably about 11 years old. Not aware of pain, not aware of being hot or cold..........just OK!!! Even some of the doctors he has seen have never heard of someone NOT reacting to pain. I shut his hand in the car door once when he was about 3 years old. I was walking with groceries and I looked back. He was just standing by the car with his hand shut fully in the car door - and not reacting. Not crying. Nothing. Not until he was maybe 9 years old I googled "doesn't react to pain" and there it was!!! It is a real thing. So he possibly has had stomach pain, but does not recognize the pain. HOW CRAZY IS THAT!!!
Congenital Analgesia? Or is it called Anhidrosis? I’m not sure. To be honest, I heard it in an episode of The Blacklist where this guy “The Courier” carried items IN his body, under sutures. Crazy the places you pick shit up! I’m very sorry to hear that your Josh actually has something like that. So there’s no discomfort in his bowel to use as a guide. I had to up my lactulose from 60ml to 75ml to get going again. It’s a horrible medication to be on. The flatulence alone will send the cat running for the corner of the room. But keep upping it until it gets the job done. That’s what my hepatologist made clear.
 
I'm sorry you're having to go through all this Evan, but your humor and positive outlook through it all is admirable.
 
I'm sorry you're having to go through all this Evan, but your humor and positive outlook through it all is admirable.
Which is exactly why I spent the whole of yesterday watching The Marx Brothers Animal Crackers, Duck Soup, and A Night In Casablanca. If I’d had a copy of Young Frankenstein, my comedy fest would’ve been complete. I sobbed through most of it, but Captain Spaulding’s trip through Africa still did the trick. Now I’m watching Quentin Tarantino at his Japanese Samurai gore peak, Kill Bill, and finding myself laughing more than I did yesterday. So that’s progress!😂
 
Well, I quietly asked her permission to buzz my hair off (been wanting it cut for months) and she said, “No.” Which means she still intends to do it. That’s what I would normally call a giant leap, though I’m cautious of reading too much into it, but it’s something. It feels like caring.
 
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