Hi. My son is 16 years old. He was diagnosed with Ulcerative Colitis in 2015. My husband also has UC. This year we noticed he was losing a lot of weight and was complaining about abdominal pain. His UC seems to be under control so we set out to find some answers from his Gastroenterologist. After many blood tests, ultra sound and MRI, we were just told that he has PSC. The doctor is sending us to Boston Children’s Hospital just for a second opinion just to make sure. His ATL numbers are relatively low compared to most people with the disease. His last number was 72, but he has been on Ursodiol since that blood was drawn. New bloodwork was done a few days ago and the doctor suspects his number should be lower as my son feels pretty good since being on the new drug(no more pain). We are trying to get some weight on him. The doctor suggested Boost. He had some the first day, but it seemed to upset his stomache. I’m not sure if that’s because his body is not used to it. Any diet tips for picky teenagers with this disease? Anyway, I joined this group because I’m terrified for lack of a better word. I’ve been doing a lot of reading online. I’m not sure if that helps or makes it worse. I have been crying on and off for a few days since we found out. Perhaps I’m over-reacting but I’m very concerned about his future as all parents are. Thanks so much for allowing me into your group! I’m sure this will be helpful for my family.
Hi Carrie, I’m sorry to hear of your sons recent diagnosis. I know how frightening it is reading about PSC on the internet, however, living with it has been easier than I thought it would be. My labs came back completely normal, after a year. My only symptom is nausea when I wake, which I’ve had from the beginning. At first it feels like the end of the world, but there are much worse diseases and for us transplant is an option. The best thing to do is to tell your son to live his life as he normally would; go to college and follow his dreams.
I’m an artist and I’ve finally gotten back to drawing, painting, sculpting etc… it’s been the best thing for me. I don’t focus on the disease anymore. I wish you could skip through this painful place you are in right now, but it’s a process. There is light at the end of the tunnel. Your son is very young. My doctor believes a cure is coming soon. Never lose hope.
For what it’s worth I stopped reading all that scary information on the internet. It didn’t help me at all. It kept me stuck in a fearful place. I go to a natural healer and she brought my labs to normal and they have stayed there. On paper I’m fine but I still have nausea. The doctor has no explanation
All the best,
Joni
Clipper. Thank you so much for responding. Reading your post makes me feel better already. It’s good to see so many people living a normal life with this disease. I think I’ll take your advice and stop reading so much on line. I hope your doctor is right about finding a cure soon. Peace to you and thank you again!!!
Gratefully Yours,
Carrie
Hi Carrie,
I, too, have an 18 y/o who was recently diagnosed with PSC (last Feb). Like your son, he also has UC. He has been taking vancomycin since last Feb (under the care of Dr. Kenneth Cox at Stanford Children’s Hospital). His most recent labs were completely normal and his MRCP showed great improvement. HIs UC is also completely under control at this time. His GI doc told me that if you didn’t know he had PSC you would think it was a normal liver. Dr. Cox has been doing this treatment for kids for many years now and I think they are trying to set up a larger clinical trial on Vanco. My son just started college last week. So far so good. Like the Clipper recommended, I would try to limit my consumption of online stuff (it will only freak you out) and make sure he is seeing a pediatric liver specialist (sounds like that is the case). I have a sense that there are many breakthroughs in treatment that are on the near horizon. If you haven’t checked out the PSC Partners website, I would suggest you go there too. They have great resources and sponsor a conference for patients and families every year (next summer it will be in Sacramento with UC Davis Medical Center). I went last summer in Cleveland and learned a great deal about the disease. It is a lot to wrap your head around as a parent, and it is an unpredictable disease, but there is exciting stuff the research pipeline and there are good resources for patients and families are available.
Wishing you, your son, and your family the best,
Alina
Thank you Alinas. I’m glad to hear your son is doing well. I have read about vancomycin and wrote it down to ask the doctors at Boston Children’s Hospital about it. I’ve heard good things about this medicine and would be interested in their opinion. I’m going to lay off reading internet stuff as it really did freak me out the past couple of day. It’s comforting hearing from other parents who have children with this disease. Here’s to finding a cure!
Best wishes to you and your family,
Carrie
Carrie,
I had a very similar diagnosis story as your son. UC in my teens and diagnosed a few years later at the age of 17. As a parent now, I’m 35 with a son and daughter, i can’t imagine what my parents went through. But to be honest the naivety and fearlessness of teenage boys thinking they are invisible to the world is likely shielding your son.
Everyone is different and has different coping mechanism but i thank my family now for never making a big deal of things. Have your routine blood tests and doctor appointments every 6 months or however often it is recommended and then have you son lead a completely normal life.
Your son will likely learn to listen to his body and will be a better judge than anyone whether or not to do something or eat something or go somewhere.
At some point he will have to deal with it, hopefully decades from now, but dealing with it is not insurmountable, it is an opportunity. An opportunity to write a triumphant chapter in his life.
Just my two cents, 20 years post diagnosis, with a happy wife, house, dog and two terribly behaved toddlers.
E
Very well put Eric. Thanks for those encouraging words to Carrie. Glad you are doing so well. Pop in here more often. We appreciate your input.
Mark
Eric and Mark . Thanks so much for the kind words and for sharing your story. My son is taking this better than me. Not much rattles his cage. I am more relaxed after joining this group and reading about people’s personal experiences with this disease. My family are fighters and that’s what we will do. We will stay vigilant with his appointments and move forward. Best of wishes to you and your families. Oh and good luck with those toddlers. All my best. Carrie
Carrie,
My son was diagnosed 1 year ago with Crohns and PSC, although he has been asymptomatic for both. I was uncontrollable for weeks after the diagnosis. Cried every morning in the shower. Had to leave my office once or twice a day to cry in my car. But, like all parents, we get ourselves under control and get into parent mode.
This site is fantastic. For me, the best PSC site on the internet. You hear from people with all levels of experience dealing with the disease.
#1- find yourself a heptologist, preferably a transplant specialist. They have experience dealing with this.
#2- remind yourself that this disease is different for everyone. My son’s levels are incredibly high but he has never had any symptoms. He actually gained 10 pounds since the diagnosis (sometimes it pays to raise your child with plenty of junk food!)
We will be starting Vancomycin soon, so discuss it with your son’s heptologist, but do your research on Vanco ahead of time. Not every doctor knows that its been relatively effective for some.
Good luck to your family, and stay strong.
Jace,
I keep hearing great things about Vanco. We are waiting to see a heptologist at Boston Childrens Hospital so I will ask them if it is something Justin should be on instead of the Ursodiol, although he hasn’t had any problems with the Ursodiol. I’m glad to hear I’m not alone in my reaction. I do worry about his weight as he’s REALLY skinny, so hopefully we can fatten him up a bit. I’m very comforted to hear from such wonderful people who can share. Best of luck to you and your family!
Carrie
Carrie,
Even as you seek out possible Vancomycin treatment, I want to encourage you to keep Justin on the Ursodiol. It really is an important tool in the quality of life for a PSC patient. It helps to keep the bile thin so it can flow around the ducts as they become beaded and strictured. No, it’s not a cure for PSC, but it does help in keeping his LFT’s down especially during the early years of PSC. I’m not sure how much they have him on, but I was on 1200 mg a day. I did have to play around with the best time of day to take it and how much at those times as I found it kept me up and down to the bathroom if I took it too late in the evening. So each patient has to find the best time of day to take it.
Mark
Mark. Thanks for the information. There is so much to learn. So far the Ursodiol seems to be doing the trick as his abdominal pain has subsided. We are still waiting for the results of his last blood work. I am hoping his numbers have gone down therefore proving the medication is doing it’s job. I know his number is low compared to most but I want to make sure we are doing everything possible for him. One thing that perplexed me when reading a copy of the MRI report was it said there is unusually marked arterial enhancement of the intrahepatic ducts therefore superimposed infectious cholangitis could not be ruled out. I expect when we see the doctor at Boston Children’s she can shed some light on that.thanks again for the support.
Carrie
Carrie,
If they suspect infectious cholangitis I would hope they would go ahead and put him on Cipro to get that under control. If he starts running a fever over 102 please make sure you get him to his doctor or the ER as soon as possible so they can get him on the appropriate antibiotics. They will probably suggest and ERCP at some point to check those ducts for strictures. If at all possible, please avoid allowing them to put stents in. They are infections just waiting to happen. I know it’s not always possible, but I’d avoid like the plague unless there’s not another option. Look forward to hearing from you again.
Mark
Thanks Mark good to know. So far he has shown no sign of fever. I will keep you posted!
Carrie
Ursodial. I have never been told about this drug but it seems like it would be a good thing for me. Every time they go on and do an ercp the two ducts they opened with stints r almost clogged up. I don’t have very much info on this disease. I’ve been so sick with chemo I haven’t been able to do much research and neither my oncologist or I r able to get any answers from my dr. I’m so glad I found this site!
Kathie,
We are glad to have you and are here for you to support in any way we can. Ursodiol is a good medication for patients with PSC. Doctors vary on their support of it or think it doesn’t do any good, but I can tell you as a former PSC patient that it does add quality of life to the patient. It thins the bile to help it flow better around the strictures. I was on 1200 mg a day for the years I had the disease.
Are you under the care of a hepatologist associated with a transplant hospital? If not, you really need to be. Make sure those performing the ERCP’s on you are skilled in advanced endoscopy and do these procedures day in and day out. I would also encourage you to ask the endoscopist to consider not putting stents in when he does the procedure unless there is no other options. Stents sometimes are needed, but they are breeding grounds for infections, thus I discourage whenever possible.
Please keep in touch and let us know how you are doing.
Mark
PSC 2011 / Liver Transplant 2015