I was also diagnosed with PSC when I was 6, but diagnosed with UC at 1. I’m 18 now and doing pretty good, I have the occasional flare ups and do colonoscopies and liver biopsies and I am on Ursodiol and Sulfasalazine since I was young and never changed, because they worked really well. I wish you the best of luck with your son. Im glad you guys caught it early! The earlier the better, welcome to the site!
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Thanks so much for the reply and kind words. I really appreciate it. I too am glad we caught it early. With my son not having PSC symptoms and only very minor UC symptoms were kind of “lucky” to get it diagnosed at all at this point.
May I ask how it is going? Wishing the best.
Hello Annie,
Thanks for checking in! At this point in time my son is doing really well. As soon as he started his medication all of his numbers came down. All of his liver enzymes are in the normal range and his UC symptoms have also gone away, for the time being at least. His doctors have been consistently lowering his prednisone does from a high of 20mg a day down to the 2.5mg he is at now. It was just lowered to 2.5mg though so we have bloodwork results coming soon to see if the numbers stayed within the normal range on that low of a does. If they do stay normal the next step is another liver biopsy to see if they can take him off the steroids all together. While he is under for the biopsy he will also get an MRCP to get a different view of his bile ducts.
Aside from all the tests and bloodwork life has calmed down a bit for us. Luckily Gavin is awesome with taking his meds and at this point has not suffered any side affects. He has continued with all hi sports and activities with his buddies. Hoping he stays that way for as long as possible.
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I am so glad to hear!!