Hello to everyone here. I am a new member, and a parent of a child with PSC and UC. My son is 10, and we received a diagnosis of autoimmune PSC, UC (most likely not Crohn's), and another skin-related blister disorder in late 2013. Since then, I have been reading non-stop all the literature I can get my hands on, but there is nothing viable that will help. The damage is extensive to the ducts, and the UC is very aggressive.
Blown away, since our son appeared to be very healthy previous to the colitis flare up that brought us to the hospital. We are onto Remicade for UC treatment, with other drugs in conjuction, after failure of several other courses of treatment. This is working in the start up phase, but we are not up for having our child on azathioprine for very long, nor steroids. There is of course, no medication available for the PSC. We have seen the Vancomycin trials, but the liver damage is already far in. We are actually using low dosage of Urso, for the possible benefit of some colon protection, but while enzymes are down somewhat, of course no benefit to the damage present.
Transplant would seem to be coming by age 13 at the outside, according to our specialists.
I am looking at two pieces of research and information right now. Does anyone here have any information about any of the following:
1. Vedolizumab: not approved where we live. For UC, but may be a possibility of improving PSC.
2. NorUrso: I've read all there is on the internet. Is anyone participating in a trial? If so, what are you seeing for results?
I am sorry to hear what you and your family are going through. Are you sure the liver is too damaged to be treated by Vancomycin?
Evidently Dr. Cox is willing to talk with other doctors and explain more about his success treating kids with PSC. I would email him right away if I was a parent of a child with PSC.
I am sorry to hear what you and your family are going through. Are you sure the liver is too damaged to be treated by Vancomycin?
Evidently Dr. Cox is willing to talk with other doctors and explain more about his success treating kids with PSC. I would email him right away if I was a parent of a child with PSC.
We have had some email communication with Dr. Cox and Dr. Shah. We are waiting to see what other info comes out of the Vancomycin trials. As well, our specialists have done scans and biopsies, and have agreed that liver damage is extensive. Portal hypertension and esophagael varices are already present.
Crewmom said:
Hello 3kids,
I am sorry to hear what you and your family are going through. Are you sure the liver is too damaged to be treated by Vancomycin?
Evidently Dr. Cox is willing to talk with other doctors and explain more about his success treating kids with PSC. I would email him right away if I was a parent of a child with PSC.
Sorry that I cannot answer your specific questions, but just wanted to give you some encouragement. You sound like a wonderful parent who is doing so much for your son! My daughter is 9 yr old, diagnosed w PSC and UC 2 yrs ago. Everything was so so so terrible, but she is doing incredibly better now...it does take some time. Keep up with the latest research like you are doing ... unfortunately there isn't too much out there now and while you are waiting there are things that you can do now. What is there for the UC didn't work for my daughter and the side effects can be severe. So don't overlook dietary changes which can have a huge impact ... it really did for my daughter. Have a blood test that shows any IGg allergies and remove any foods that show up. When I removed these food allergies from my daughter's diet, her liver bloodwork went to normal and has remained normal!!! Follow the scd diet for the UC - it is really difficult but it does work. Your son will feel so much better getting rid of the diarrhea that it will be worth it. Or, just get rid of all sugar and all flour and no fried foods, you will see a drastic improvement in the UC. That is what my daughter is doing now. And, make sure your son is on the prescription probiotics VSL3DS...very important as well.
I am so sorry to hear about your son! I do agree with Cookie about the food changes and testing. Have you tried having your son be completely gluten free with food, hair and skin products, etc.? Also, support with Milk Thistle and Alpha Lipoic Acid is highly rec. You can double the dose that is listed on the milk thistle bottle. I rec. the Jarrow Milk Thistle. It is easy to find at Whole Foods. Stanford had my mom on it, I am on it, and my dad has now had to start it since his alk phos is high.
Is the background of your family or grandparents anywhere in Eastern Europe or in Ireland?
I know it is hard to watch your child hurt with this disease, but definitely try the diet changes. I believe that the changes will be noticeable soon.