Good morning all,
It’s been a while since I’ve posted, I continue to read, trial and monitor our son. He has been averaging an ercp yearly and normally a ballooning of his bile ducts will keep him relatively symptom free for about a year. Some things we have noticed:
Sugar/fructose- anything high in these cause him to break out in a rash on his face and starts itching immediately! If he stays away from it he feels great
Since being gluten free, he has had no symptoms other than jaundice, but he continues to play rep hockey and feels good.
One question, we take notes on what he needs, note his color and try to identify what works and what doesnt, why is it that everytime he has a cold coming on his eyes and face all the jaundice??? Then he gets the cold and it returns but usually not as bad.