My daughter (6) was just diagnosed with PSC. I took her to the doctor because of chronic diarrhea and she ended up diagnosed with this, autoimmune hepatitis, and inflammatory bowel disease. She gets headaches and occasional chest pain (and has diarrhea, but that is already coming under control with meds) but otherwise is cheerful and active. So… What should I be expecting from her? Is there a typical progression of symptoms? Is she going to be okay in school? What should I be looking out for and be concerned about? I am really in the dark. The way the doctor talked about it, I didn’t realize psc was a big deal until I started looking into it online. :\
There really isn't a typical progression of symptoms, but there are some things to be aware of.
Many people with PSC suffer from various levels of fatigue. This can creep up over time. If your daughter doesn't want to partake in an activity, it doesn't necessarily mean she is being lazy.
Know the symptoms of bacterial cholangitis. If your daughter has a fever or chills with any combination of vomiting, diarrhea, dark urine, or itching, this may necessitate antibiotics. Ask your doctor what he would like you to do in this situation (standby antibiotics, go to ER, etc.).
Ask your doctor to track fat soluble vitamins (A, D, E, K). People with PSC have a hard time absorbing these vitamins so it is really important to monitor and supplement if there are any deficiencies.
Hillary, JTB gave good advice.
PSC progesses very slowly and can affect people differently. The only thing typical about it is that it wipes out the bile ducts over a long period of time. While it progresses slowly, it can have some deliver some bad symptoms that JTB mentioned. I would add about the bacterial cholangitis, that if she has an unexplained fever of over 101 degrees, get her to the doctor.
Keep an eye on her skin color, as jaundice can indicate the necessity for antibiotics also.