Unexplained hyperammonemia with loss of peripheral vision, HELP

waif

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Okay I'm trying to see how we could get him to try ravicti. I'm worried that would make him do some elaborate genetic test first which he obviously can't do at home
 

S-VV

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I forwarded this information to him that's *very* useful, do you know how to find a good telemedicine doctor? I'm worried that they will want to see him for the initial visit in the office

Money is not an issue. He'd pay a lot for a good telemedicine doctor.
Sorry man, I'm not in the US. I imagine googling for any doctor that has immediate availability, showing the ammonia measurements as well as the signs&symptoms should get you an ammonia scavenger. In the US phenylbutyrate is called "buphenyl", if that helps.

Also, protein restriction, higher carb intake, and citruline/arginine supplementation are low-risk interventions that may be worth investigating.
 

S-VV

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Okay I'm trying to see how we could get him to try ravicti. I'm worried that would make him do some elaborate genetic test first which he obviously can't do at home
I think that given the blood test plus symptoms, as well as the high risk of permanent damage, not offering a scavenger would probably be close to negligence
 

waif

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His prolactin levels are also elevated but I realize that's like an entirely different issue probably.

I see a bunch of telemedicine doctors. But I'm worried about him receiving blood work at home because of covid. I'm in Georgia and it's very easy to receive the vaccination, I said I was a caregiver to my dad. But in Maryland (where he's located) it doesn't look like they're anywhere close to allowing younger people to receive the vaccine.

Edit:. I hope biden is right, may 1st seems awfully close tho. And then I'm not sure how he would go to get the vaccine without becoming sicker
 
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Dysbiosis can be a cause - if he has a healthy friend, fecal transplant would be decent to try. Or something like rifamixin for ammonia generating bacteria. Candida can also release ammonia so an anti-fungal wouldn't be bad to try.