My daughter was 2 1/2 when she was diagnosed with PSC and UC…she has been on oral vancomycin, ursodiol and pentasa for the last 7 years. And up until November she has done well. We are struggling a little right now tho. I dont have anyone around here (iowa/minnesota) for support either. So hoping finding others on the site to be helpful in the struggle my daughter and I face.
Katiejo,
Hello again. We are glad to talk with you and help in any way we can here on this forum. You are welcome to post your question or burden for your dear daughter or you can private message me or any of the other forum participants as well. We are here for you and know the pain and suffering she is going through. How old is your daughter presently?
One thing that is so very important especially in dealing with children with PSC, is that you are not constantly drawing attention to her of her illness. Let her run and play, do anything that a girl her age might do with all the zest and energy she can. Don’t tie her down to all these miserable diets thinking you are going to make PSC go away. Let her eat what she can. When she feels bad, she will let you know, otherwise just let her be all the girl she can be!
Hopefully her PSC will progress slowly as it often does with younger patients. There will be times down the road for different interventions, but as long as she feels good and the itching is under control, etc. just let her be a normal young person as much as possible.
Do keep in touch with us and the group. You are not alone in this. It’s also very important to have a good family support structure or close friends involved. Educate them about PSC and when times get tough, you need folks you can lean on for support and help. Take care.
Mark
Do you have any drug for treatment of PSC?
There are no drugs for the treatment of PSC. There are medications to give you a better quality of life such as URSO. There are medications for itching. Some have found Vancomycian to greatly reduce their high liver numbers. It is not a cure for PSC, but it has given great relief to some even here on this forum. If you don’t have a hepatologist looking after your care, I would encourage you to find one. Make sure he/she is directly associated with a transplant hospital.
Mark
Thank you so much.