Wanting to help my son

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Permalink Reply by PSCMom on March 31, 2012 at 7:59am

Maria
My son has been on Ursodiol (Actigal) since Feb 2011 and was initially on Prednisone. Fortunately it has worked very well for him and his liver enzymes have been in the normal range for about 9 months! He has been feeling great. He just had another ultrasound which showed no changes from a year ago so he is not any worse. There are some studies against Ursodiol in adults but he is 13 and for now it's working.

If you don't feel like you are getting what you need definitely get another opinion, second, third opinion, whatever it takes.
Donna

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Permalink Reply by Cléa Farias Nery on May 11, 2012 at 9:16pm

Dear Friend,

My son has primary sclerosing cholangitis and ulcerative colitis since the age of nine. Today he is twenty. Eleven years ago I live a great anguish. Thank God my son is fine. I read your report and moved me. I know how difficult it is for you to live with this pain. This silent disease end up with every mother and father. If we suffer so much, imagine our children who are affected of this rare and incurable disease for men? Thanks to the good Lord of my son the doctor is an excelent professional. Take care of him like her son. Thankfully, God has placed in our path. I have all the scans and pictures from the diagnosis of my son. In conversation with Dr. Jussara she asked Lucas did not eat any red meat, asked him to eat only white meat (poultry and fish). After Lucas stopped eating meat abadominais pain decreased considerably. I do not know if this is the case of his son, but if possible, avoid as much as he eats red meat. The fruits and vegetables without pesticides are essential for feeding patients with cholangitis and colitis. We know that everything we eat passes through the liver. If the liver is sick, we should avoid harm him further. Lactobacilli live are very important for the care of the intestine. Our children need to have a quiet life and light. When the disease was diagnosed in my boy the first thing the doctor told me was that the main concern would come when he was a teenager. Today, he and I live in this difficult time. I understand your concern and pain because I live with it every day, we must have the strength to be able to strengthen our children. We are the pillars of our children. We are so distant and yet so close to each other. What remains is to take good care of our boys because every minute is a lifetime. We must care for and believe that better days will come, because the medicine each day progresses and new discoveries behind. Let us believe, let us unite, we believe in a long and happy life for our children. We do not know God's purposes, why should we believe and hope. My loving embrace.

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