My daughter (6) was just diagnosed with PSC, autoimmune hepatitis, and inflammatory bowel disease this month. It was a shock, though we knew something was wrong because she had had chronic diarrhea since March. I was expecting a dx of UC or Crohn disease, but the liver involvement caught me blind. Right now she is taking Prednilosone, omeprazole, and ursodiol, and we are seeing improvement I her bowels , but we have to wait on blood tests to see how her liver is doing.
My daughter is handling everything pretty well, though all we have told her yet is that her liver is sick and needs medicine. She is still apparently feeling healthy. My husband and I are still trying to gather information.
Also, I let a few close friends know, but there has basically been a blank silence from them. I realize there is a big element of not knowing what to say when you hear about someone’s problems, but I need to be able to talk to people that understand this, both for my own sake and so I can care well for my daughter. Are there any parents of young kids with psc here?
I said this in the other post, but PSC Partners facebook groups have many parents involved. Definitely a great resource for information along with this website.
Hilary, it is common for this diagnosis to take some time for the reality so sink in for both patients, parents and caregivers.
As PSC is considered rare, it is not unusual to get blank stares when talking about it. A good way to say it is that she has an auto-immune disease of the liver that causes problems with the duct system the liver uses for its bile.
If you want to do a search of the discussion, that may help you find some parents of young kids.
Start LDN (low dose naltrexone) therapy as soon as possible. My 9 years daughter is talking LDN for 6 weeks now and she doing very well. All PSC symptoms are gone. I strongly suggest not taking any standard immunosuppressants, because they have lot of heavy sides effects. I know it from my daughter. LDN has no side effects and can do a miracle.
As you will see: Primary sclerosing cholangitis, Crohns Disease and Autoimmune hepatitis are among diseases where LDN could be of benefit. My daughter (9) was also diagnosed with PSC and AIH March 2015. Now she is doing well on 3mg LDN only every evening at 9pm just before going to sleep.