Hi everyone. My son is just 4 years old and just diagnosed with PSC in the last month. The biopsy suggested stage III, although the fibroscan numbers were perhaps better than expected for stage III. I do not have the exact fibroscan number. Our son is currently asymptomatic. We only learned of this as I requested a blood test following a particularly strange stomach illness in March. He was followed via bloodwork for a while, finally underwent more invasive testing in June. We are learning a lot about this dreaded disease and feeling very anxious. I am hoping to connect with, or perhaps even just know that there are, other parents out there with children dealing with this diagnosis…We looked for a parents support group through our hospital, but this disease is so rare in children they did not know of that exact resource locally. Thank you in advance.
I am so sorry this happened to your son and you.
I am also a parent of a boy with this diagnosis. Or, the doctors can’t agree with themselves, he’s not finally diagnosed. But he has the diagnosis of Ulcerative Colitis and autoimmune Hepatitis, and they think psc is also on the table. He was eleven when this happened, now 12. He was diagnosed this spring.
I am not very experienced in this, but wanted to reach out to you as I know how you feel.
My boy is currently doing very well, and we are positive. We are 5 months in, and have processed a lot.
I got a great advice in here, and that was to not talk too much about it, let him have an as normal every day life as possible. I think that can be easier for you because he is so little.
My son also has UC and possible PSC (di in February 2017). He is 17. He is currently on sulfasazaline and is doing well. He has been asymptomatic the entire time and we only became aware of the UC after a physical showed elevated liver enzymes. His labs have fluctuated from Normal to mildly elevated since his diagnosis.
I know the devastation, fear, and general anxiety that can accompany this news. I was in a very dark place for a couple of months. But this is a fantastic place for questions or advice. There is a lot of hope here, which is great. Honestly you have to focus on the positive and learn to focus less on the what ifs. It can make a person crazy. Take care.
I have found wonderful support and new friends via the FB sites also. There are two:
Take care of yourselves and know that you have found a great great group of folks here.
Peace and Light,
My son was diagnosed nearly 4 years ago at the age of 12. He was and is stage 3-4. ( at diagnosis and currently). He is an overlap of Autoimmune Hep and PSC. No UC. He did not reach remission with AIH, and PSC does not have remission but “flares”. He was on 40mg prednisone and immuran. His care was transferred to the liver team at Texas Children’s hospital. They have treated many children and currently have 15 with the same overlap diseases. He is no longer on prednisone. He is still on immuran and ursodol. The condition is serious but as long as he takes his suppression drug, the ursodol has reduced his inflammation to almost normal. His liver may heal without the inflammation. His chance of needing a transplant is very slim. The team has stated that more research has been done in the past 5 years then the previous 20, giving them new and better drugs to slow the effects of the diseases. This is a marathon, not a sprint. Josh has had no symptoms other then some side effects from the drugs ( he managed). He leads a full healthy happy life. 6’2 and strong as an ox. The disease is a tiny portion of his world now. You are a great mom, you are doing everything you can. It is scary but there is hope. The numbers will go up and down. the inflammation and bilirubin are what I watch. I will be praying for your son and you. Debbie
I have PSC and I would not wish this on anyone or a parent. I will keep your family in my prayers.
We have a facebook group @ https://www.facebook.com/groups/LivingwithPBCPrimaryBiliaryCirrhosis/
I hope this helps some, you are not alone.
Thank you Cassidyrocha. It is good to hear this and I am glad your son is doing well. Do you know the stage of disease your son currently has? I really appreciate your sharing. Thanks again for your reply.
Thank you Annie for this note. I am sorry to hear that you are dealing with these burdens as well. I am glad he is doing well and thank you for sharing with me a bit about your story.
We haven’t received that information as of yet as the results from his testing have been inconclusive. My guess would be very early. We live in Denver so he is currently being seen at the liver clinic at Children’s Hospital but he will soon transition to adult care. I hope your son is also doing well.
I am also under the impression that we are in a very early stage.
You should definitely read the article by Dr. Ken Cox called The Case of the Dissapearing Liver Disease. Then research oral vancomycin and PSC. It can be a lifesaver for young patients in the early stages of PSC.
How are you? Another user reached out to me after she read a post that I wrote about my daughter when she was 7 years old. My daughter is now 12. It has been a long journey with lots of bumps. My daughter was diagnosed at age 3, she showed symptoms of something at age 2 and 1/2. I know how hard things may seem. You have to continue to be strong. It is not easy I know and there will be days when you think you wish this would all disappear and you do not have the strength to continue. However, you are a “Mother” and you will be a champion for your child. Just keep praying and know we are all behind you.
Lots of love always,
PrincessD’s Mum (PrincessD is no longer a Princess, but a “Pre-Teen”!! Lol Her words!!)
How is your son?
I could not have written this better if I tried. You are a brilliant Mum too.
Thank you for asking! I will give you good news in return.
He has been stable since June, all of his blood work are within normal range!!
Ha takes prednisone 5 mg, imurel 75 mg and Asacol 800 mg. He also has reduced gluten and dairy, as well as taking some prebiotics. He has the energy to invest in school and soccer. I am very grateful, yet I know it is only for the time being.
I too am a mom of a daughter with PSC BUT oral vancomycin has not only stopped the progression but has reversed all the damage. She was in stage 3. I HIGHLY encourage you to look into it. It needs to be ANI brand. Check out childrenspc.org to learn about it and push your doc to try it for 6 weeks to see if it makes a difference with bloodwork. Good luck!
Hello- I am just seeing this post now (it looks like it was posted a while back). My son who is 17 has PSC, and I have nothing to offer except to let you know that you are not alone. Just sending you some positive energy and love:)
My son was diagnosed 7 years ago at the age of 15. He was diagnosed with PSC, UC, Autoimmune hepatitis & he had an enlarged heart & spleen & his kidney function was abnormal. He was playing hockey & almost collapsed. We thought it was his asthma. He ended up having his colon removed. He recovered quickly after surgery & was symptom free until a week ago. The hardest part for me as a parent is not having any control or say in his medical journey. Once they reach a certain age they don’t have to involve us in thier decision making. My son stopped taking his medication because he didn’t think he needed it. Last Sunday was a wake up call for him. He is now going in for a scan of his liver to check for cancer. He is also constantly worried about medical coverage & cost. I will say I have been blessed. He has never struggled with depression or ever given up. His outlook is always positive as is his philosophy. None of us are promised tomorrow. It’s all about making the most of each day. He lives each day to the fullest & keeps me on my toes & in stitches! My advice as a mother would be to act with vigilance yet not live in a state of fear. Understand the symptoms & be as pro active as you can. His symptoms always seem to present as flu like. He typically ends up in the ER with a few bags of IV fluids, has bloodwork drawn, scans performed & we hear either he’s progressed or is still stable. I’ll admit I quietly panic during these trips but I never show it. Not in front of him. He has been fairly stable. I do celebrate the anniversary date of diagnosis & give thanks that he’s made it another year without anything major. That day will always be in the back of my mind. It affects everyone differently. My thoughts & prayers go out to all of the families dealing with this.
Keep your chin up & your faith strong.
Thank you for sharing your sons story. I’m sure it has been an encouragement to those who read it. I am glad your son had a wake up call about being consistent with his medication. If you are close and he isn’t married yet, I would recommend asking him if he’s willing to make you his health care power of attorney. This would come in real handy should his health go real bad and he needs someone to act in his behalf. I know before my transplant I had mine drawn up and my wife was the primary with one of my daughters being secondary. Even having durable power of attorney to act in his behalf in regards to his business if he’s not able to, sure does eliminate a lot of heartache for him later on and you as a family. Just food for thought.