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5 y.o. UC and PSC


#1

Hello everyone, my name is Fabrizio and I’m from Italy. My daughter is almost 5 y.o and last July she was diagnosed with ulcerative colitis and PSC. We are shocked and deeply saddened, We don’t know how this happened. The initial therapy was azathioprine, udca and prednisone but unfortunately after a month she no longer tolerated azathioprine so we stopped it. Now we have to wait for the results of some blood tests and then the doctors will decide what to do. We would like to try vancomycin but in Italy it is approved only if all other treatments have failed, including biological drugs. We are opposed to immunosuppressive drugs because the side effects have been debilitating, any alternatives? Does anyone know how this disease evolves in such small children?
Thanks in advance,
Fabrizio.


#2

Fabrizio - I’m so sorry to hear. We live in the states and my son, who is 4.5 years old, has also been diagnosed with UC & PSC as of July 2018. This has been a very difficult process as I’m sure it has been with you. We are also shocked and saddened by this and growing to learn more and more. Where in Italy are you from? My husband is from San Marino. I would love to connect via email.


#3

Thank you for reply! it’s not easy to accept what has happened to us and in truth we haven’t yet accepted it.
I’m happy to find kind people to exchange information, I sent you an email, see you soon.


#4

Hi Fabrizio,
I too know the shock of having a child with a PSC diagnosis. But, my daughter started taking oral vancomycin (250mg 4x a day…ANI brand) and it has normalized all her numbers and even her liver seems to be healing. I strongly encourage you to push for this drug…it can be a miracle and your daughter seems to be the perfect candidate…young and with UC. Feel free to reach out with any questions or advice. I know you are devastated now, but if vancomycin helps, it can make all the difference. Joanne


#5

Vancomycin has shown great success treating PSC in young children. I hope there is some possible way to get it for your child. Studies done years ago have established that immune suppressant drugs are not effective to treat PSC. Also, there is no research that Urso cure PSC. There are some adults who have benefitted from Urso but I’ve never heard of Urso curing PSC. Dr. Cox at Stanford University in California (Lucille Packard Children’s Hospital) has had great success for ten years treating children who have PSC. Perhaps you could contact his office to get information about Vancomycin and if it is available anywhere in Europe? I also recommend you do research online to find credible information showing that there s no effective treatment for PSC in children other than Vancomycin. That might help persuade your doctor that Vancomycin is the only drug that treats PSC in children.
You also asked why young children get PSC. I an sorry but, the answer is that researchers have not been able to find what causes PSC in adults or children.
Except for Vancomycin for children there is no cure for PSC except liver transplant.
I got PSC as an adult. I cannot imagine how painful it is to have a child with PSC. I hope you can convince your doctor that there are no other drugs that can help. If possible, I would take the child to see a children’s liver specialist at a hospital that does liver transplants.
I wish you good luck getting Vancomycin for your child.


#6

@Joki @Jennifer_Soloway
Thank you for your advice, I will try to ask the hospital doctors for vancomycin for my daughter. I know for sure that another child is using it with excellent results!