Daughter with PSC and UC also cardiac patient as well

Looking for some help or suggestions. My daughter is 9. Was diagnosed 6 years ago with PSC and UC. We have had regular check ups and her function counts have been maintained well with the help of ursidiol, pentasa and vancomycin. Took her to the ED end of November bc she turned cyanotic in school, she is also a cardiac patient. Cardiac function was fine, but liver counts were high. She did test positive for adenovirus that day. Went back a week later for lab rechecks, still up, but down from what they had been. Returned again last week and her counts were back up, to where the dr was concerned on how she was doing. Adenovirus was not present in these labs. We go back in a week for more lab checks bc until earlier this week she has been ok. Not lethargic, jaundiced, no nausea
Currently- Her hair is falling out and breaking off terribly. She itches her legs alot. Just curious if anyone else has had issues with hair loss associated with this… She has cold like symptoms (cough and headache)right now. And isnt eating much if anything. She also has Down Syndrome and has a harder time communicating with me on how she is feeling. Typically I get ‘dont feel good mom’ or ‘head hurts, cough is bad’ so it’s hard for me to know if her stomach hurts or what other kind of feelings are associated with PSC she may be having. I dont know anyone else with a child this young that has PSC and UC and is cardiac. So hoping someone can help me out or have some sort of advice from their experiences as a child or with their own child. Thanks so much :slight_smile:

Those are some strong challenges you and your daughter face. In being a caregiver to a pscer, communication is key.

To the parents out there, please add how you help your child-techniques, tips, recommendations…

At some point, pscers have varying degrees of a loss of appetite. To a degree, UC as well. If it had not been for prednisone adding the pounds, I would have had some weight loss when I had UC.

Is your daughter being treated by a hematologist/liver specialist? If not, I would highly recommend it.

I wish you well in what your family is going through.

Thank you, yes we see a specialist at Mayo Clinic… she was on prednisone for awhile when first diagnosed but i was able to take her off of it. Just hard for me to know what she might be or is going thru at times. I wish she was able to communicate a little bit better, so I am hopeful there may be someone able to help me a little… :slight_smile: