My son is 12 years old amd was just diagnosed with PSC, UC, and autoimmune hepatitis. My husband has Crohn’s Disease so while the IBD diagnosis was upsetting, it was at least something we are familiar with. The PSC and hepatitis have thrown me for a loop. His doctor tells us it is very early stages and his liver enzymes already came down considerably after 1 week of Prednisone and Actigall. We have told my son everything about his current conditions and the chronic nature of the IBD and the Liver disease. We did not yet bridge the topic of the likelihood of a liver transplant in his future. He does not ask a lot of questions and I answer honestly the few has asked. My question to all of you who have been living with this for some time is how much information does a 12 year old need.? I have told him I am doing a lot of research for him but he does t ask what I have found which makes me think he is not ready. My husband says I am being too negative but I am in healthcare myself and have always believed that knowledge is power.
Another question I have is does anyone have any advice for relief of painful attacks (non-medicinal)? He had a bad one during the night after having some ground beef, it seems to be higher fat foods that trigger this… We are obviously early on in learning what food triggers to avoid but I wanted so badly to find a way to reduce his pain while it was happening.
Thank you all for the support you provide each other and family members such as myself.
Welcome to the community and hopefully we can help here.
I'm sorry to hear about your son's diagnosis. I can't imagine what it must be like to have a diagnosis so young. One of the things my doc's remind me of is that focusing on the liver transplant issue is a bit long term. The most important thing to start with is finding your son's MELD score (that's how they track the need for transplant). You've probably read about it. You can't even get listed until your score is above 15 and you aren't in the danger zone until you hit 25.
Every person is different, so there is no way to know about when he'd need a transplant, but if he's responded so well to the meds, you're probably talking double digit years (as opposed to months). The other thing to remember is to ignore all the transplant stats you see on the web (which are frightening). Most people who get liver transplants are much older, and, to be frank, are suffering from disease brought on by a lifetime of risk factors like smoking and drinking. Your son is probably the optimum type of patient that surgeons dream about when they talk about transplants.
I can only speak for myself but I ask my docs to tell me everything. Better to know and plan in a positive manner, right?
As to the pain issue, I've yet to find anything. It's been trial and error. Fatty foods and dairy set me off, so I just have to avoid those now (pizza....sigh). I would say be VERY careful with non-medicinal treatments. The liver processes a lot of things so make sure you run any supplements/herbal stuff by your son's doc before he takes it.
Hi, I am very touched reading your message- first, because I was diagnosed with Ulcerative Colitis when I was 3 years old, and second, because I'm a mother now and I can't imagine how difficult it must be to be responsible for disseminating the information on both UC and PSC to your son. My parents were both in the medical field when I was a young girl and opted for not telling me too much, which I think was a mistake. I was diagnosed at 32 with PSC, and I wish that I had known more about the digestive system and what and how various foods affect the body and mind.
I also have more pain with more protein-rich and fat-rich foods. I'm a vegetarian which helps significantly, but when I have gotten ill it has been when I've had animal fats without knowing it or a protein -rich piece of fish, which I eat from time to time.
I would let your 12 year old guide you, stay away from any 'maybe' scenarios as it's best to stay positive. When I got my UC diagnosis they said I would have a coloscopy by age 10 and have colon cancer by age 20, neither of which happened. Living in the moment is best, keeping as stress free as possible.
I hope this helps. All the best to you and your son.
My son is also 12 (diagnosed with UC at age 9) and we are at Shands today going through the process of deciding if he has PCS and/or autoimmune hepatitis. The doctor told us that after he gets the results of the blood work he will make the decision of whether or not to have the liver biopsy. Did your son have to go through that? We are a bit overwhelmed, and we are keeping my son informed of what is going on, but he has been upset about the whole thing. Any advice would be welcome.
Maria
I am sorry to hear what your son is going thru. My son had an ultrasound, liver biopsy, an MRCP and another MRI after his initial colonoscopy and endoscopy to diagnose the IBD. We were told that there is a spectrum of autoimmune hepatitis and PSC and our son has components of both. He has responded very well to Prednisone and Urso and we have been weening him down off of prednisone with no rise in his liver enzymes, his appetite has returned with a vengeance and he gained 11 pounds this last month. Today he made the middle school baseball team after a winter of needing to nap after school everyday! The diagnosis is extremely overwhelming especially when you read about the probability of liver transplant. My son has asked very little questions, he knows that the condition is chronic and that he needs to be on medicine and closely monitored forever. The concept of liver transplant has not come up and I haven’t offered that information to him yet. I’m following his lead for now and be honest but not giving him more details than he is asking for. I have told him there are websites that he can go to that are geared for kids and teens with PSC and he is not interested. For now he just wants to know what pills and when and can he still play sports. I am going to just be greatful for this rapid response to the Prednisone and appreciate the time it is giving us to process the curveball that we have been thrown. I know things could change tomorrow but each good day is a blessing. I don’t have a lot of advice to offer since we have only been dealing with this since Feb but can definitely offer support. I am lucky to have a sister who is a nurse that I can call and freak out to so that I get it out of my system and not let Tyler see my complete panic. Kids definitely read between the lines and mirror our reactions so I think its important to allow myself to cry or be angry or terrified when I am away from him so that I can put my own emotions aside in front of him. I have promised him complete honesty, answers to any questions he has and undeniable support. I have forbidden my mother in law from giving him that look of pity every time she sees him (the one he has said makes him feel like he is dying), I have done a 504 plan at school so that he is not penalized for all of the school he missed, I sit up with him all night when he has pain, I let days go by without asking him how he feels when he is acting like his old self, I make him do his chores, his homework and treat his brothers nicely so he doesn’t feel like we treat him different.
Then in my car or bed when I’m alone I cry, pray and I worry about his future.
Please let me know what the results are for your son and if he needs the liver biopsy, contact me any time
I can relate to your son's story. By age 12 or 13 I had early symptoms of IBD. I thought it was no different for anybody else, so I never talked about it. I didn't let it stop me from enjoying life. At age 48, I was diagnosed with pan colon ulcerative colitis. This was the first time I went to a doctor or took medicine in my life! It took 13 months of steroids to heal. I had elevated liver enzymes and my GI said not to worry, that happened to about 10% of people with UC.
Twelve years later in 2007, I was diagnosed with PSC, Stage IV Liver cirrhosis. I never drank alcohol, did drugs or smoked. Never in my entire life. I was accepted on the liver transplant list in June 2010. I don't let it get me down, though it was frightening for a few months after I was diagnosed. You make what your life is going to be like. Worry and giving in to the symptoms (which for me are considerable now) makes a victim out of you. Take your meds and pursue life with enthusiasm. Don't let fatigue, pain or any symptoms take your joy from you.
I'm a retired (as of September 2010) educator now, having worked 43 years in the profession. If your son is like the thousands of K-8 students I knew, he can handle a lot of bad news, especially if his family and friends are a positive support group for him. As computer literate as kids are these days, he has probably researched PSC and knows more than you think. You might want to Google Kris Klug, an Olympian snow boarder, who has a great story about his life before and after his transplant. He won a gold metal after having his transplant. How about that for an accomplishment! You can reach your dreams. Have a good life. Get married. Raise children. And, be victorious over PSC.
My goals? I plan to live to 89, help raise my grand daughter, see her married, regain my pilot's medical so I can resume flying and go back to racing 65 foot sailboats in the ocean. Talk about your dreams and set your goals. Know you will get that transplant and that you can beat anything PSC throws at you.
12 years old is a very hard age for a child to learn that he has a chronic disease. I think that you are doing the right thing by answering his questions, but not telling him any extra information. When he is ready, he will ask.
Wow...just reading this makes me abit more humble...your son is 12 ..mine is 27 and we've just gotten the news
that he has early psc and uc...I also have uc which seems to be the link. As a Mom I totally feel for you ..I've been a mess for 6mons. with all the tests etc. and now to hear that my Son will have a long term illness that we have to
endure. As far as foods...my son who never had a problem with dairy is now starting to experience blotting and intestinal discomfort which he never had before. You need to be aware of these triggers as they could be different
from what your used to. Pay attention and start to illiminate things that cause problems...he always had his typical protein shakes which included milk..so I told him to try soya milk..than if that bothered him try just water..then if
it still does than it must be the whey protein. Monitor him and elimate what seems to trigger. As far as remedies after the fact...maybe Tums and a heating pad on his belly? It's a hard thing to deal with and we're all in the same boat here so wish you the best with your son and I'll be scrambling here with mine.
I was 22 years old when I was diagnosed and to this day (26 years old) I still struggle to cope with the battle ahead. My mother did an immense amount of research and documented everything for me for when I was ready to accept my situation and take on the fight for myself, which has been invaluable as I take this forward for myself. I can't imagine how difficult it would be for your 12 year old son to cope with and understand this disease.
I agree that knowledge is power and I think you should continue to gather as much information and knowledge as you possibly can. Try to get everything you know documented so when he is ready and has more questions, you will have an easy to provide binder/summary/whatever format works.
I'm reading everyone's stories here and feel for you all. My Son (27 just got diagnosed with early stage psc. and by reading these stories I'm freaking out. He had his first episode about 6mons. ago which lead us to this now. Thank God he's doing great right now but I'm on pins and needles wondering if he'll have another episode that will sent him in a downward spiral. I don't understand this disease..I've read and am on this site but it is such a unique disease by the looks of things. I've read people having this with no complications for years and others that are going through hell. My Son volunteered to be in a research program at our hospital which is being done at the Mayo clinic in the states. He just needed to fill out a questionaire family and personal history and give some blood. Are you guys involved with this? We need to pull together and try to find a cure or at least a better understanding and new meds that prolong a transplant.
Hi, I am a 43 year old mum of three teenagers, and have lived with PSC for 14 years. I avoid things like fish & chips, chicken skin, and fat on meat. If you cook ground beef, add onion & beef stir until the meat has browned, "drain off all the fat" and then add other ingredients. You may need to have dinner as early as possible as this will help digest food before your child goes to sleep & it helps to prevent nausea and vomiting. People with PSC can sometimes have vitamin A B & E deficiency, it's best to speak to your childs specialist about that. I hope some of this helps you. Kindest regards Ellie.
my son is 18,just started university was was diagnosed with Ulcerative Colitis and early stage PSC which the consultant said was perfectly treatable! I was therefore shocked when I looked up PSC on the internet. I work for the NHS in Scotland and worry that because this condition is rare and not receiving much media attention that few resources are being allocated to look in to a cure/ better treatment for this alarming condition. I am, however very interested in reading the outcome of the Vancomycin study due to be published this year.
joe said:
Joe,
I'm reading everyone's stories here and feel for you all. My Son (27 just got diagnosed with early stage psc. and by reading these stories I'm freaking out. He had his first episode about 6mons. ago which lead us to this now. Thank God he's doing great right now but I'm on pins and needles wondering if he'll have another episode that will sent him in a downward spiral. I don't understand this disease..I've read and am on this site but it is such a unique disease by the looks of things. I've read people having this with no complications for years and others that are going through hell. My Son volunteered to be in a research program at our hospital which is being done at the Mayo clinic in the states. He just needed to fill out a questionaire family and personal history and give some blood. Are you guys involved with this? We need to pull together and try to find a cure or at least a better understanding and new meds that prolong a transplant.
Thomas had a MRCP last summer because of his elevated liver enzymes, but they are higher now than they were last summer. What has worked for you son? I feel as though the doctors at Shands treated Thomas and then never followed up, and our doctor here is expecting the doctors at Shands to set the pace, and that is just not happening. He has had elevated enzymes in the 300-800 range for over a year and I am sure that can't be good. We are thinking about taking him to Mayo in MN to see if we can get some straight answers. Is there something I should be asking our Doctor about? He has not mentioned putting Thomas on Prednizone, but I have seen in a few posts that it helps. Any advice would be helpful.
Thanks
PSCMom said:
Maria I am sorry to hear what your son is going thru. My son had an ultrasound, liver biopsy, an MRCP and another MRI after his initial colonoscopy and endoscopy to diagnose the IBD. We were told that there is a spectrum of autoimmune hepatitis and PSC and our son has components of both. He has responded very well to Prednisone and Urso and we have been weening him down off of prednisone with no rise in his liver enzymes, his appetite has returned with a vengeance and he gained 11 pounds this last month. Today he made the middle school baseball team after a winter of needing to nap after school everyday! The diagnosis is extremely overwhelming especially when you read about the probability of liver transplant. My son has asked very little questions, he knows that the condition is chronic and that he needs to be on medicine and closely monitored forever. The concept of liver transplant has not come up and I haven't offered that information to him yet. I'm following his lead for now and be honest but not giving him more details than he is asking for. I have told him there are websites that he can go to that are geared for kids and teens with PSC and he is not interested. For now he just wants to know what pills and when and can he still play sports. I am going to just be greatful for this rapid response to the Prednisone and appreciate the time it is giving us to process the curveball that we have been thrown. I know things could change tomorrow but each good day is a blessing. I don't have a lot of advice to offer since we have only been dealing with this since Feb but can definitely offer support. I am lucky to have a sister who is a nurse that I can call and freak out to so that I get it out of my system and not let Tyler see my complete panic. Kids definitely read between the lines and mirror our reactions so I think its important to allow myself to cry or be angry or terrified when I am away from him so that I can put my own emotions aside in front of him. I have promised him complete honesty, answers to any questions he has and undeniable support. I have forbidden my mother in law from giving him that look of pity every time she sees him (the one he has said makes him feel like he is dying), I have done a 504 plan at school so that he is not penalized for all of the school he missed, I sit up with him all night when he has pain, I let days go by without asking him how he feels when he is acting like his old self, I make him do his chores, his homework and treat his brothers nicely so he doesn't feel like we treat him different. Then in my car or bed when I'm alone I cry, pray and I worry about his future. Please let me know what the results are for your son and if he needs the liver biopsy, contact me any time
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
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.
Hi PSC Mom I also have a son with PSC/AIH diagnosed at 12 and have told him it is serious and answered any questions he has, but like you I have done hours of research and kept the information to myself.Don't see the point in alarming him about something that will probably affect him when he is an adult and more mentally mature to cope with the implications of his condition. He is great taking his azathioprine/predisone,has no symptoms so far and is responding well and we don't see the point in putting a dark cloud over his life'/future before we need to. Have you had a look at the research by Stamford Uni into use of vancomycin (an antibiotic) for kids with PSC? Gives me some hope.
My daughter was diagnoised with crohns at age 12 and PCSa year or so latter. We were blessed to find a unusal but miraculous treatment for crohns early on when we were introduced to a doctor who is using Wellbutrin as a TNF inhibitor in crohns with amazing results. I took care of my daughter crohns and has kept her well in that regards. Unfortuanetly until recently we did not find a effective treatment for my daughters PCS until it was last year which has turned out to be to late as my daughter was flow to methodist in dallas and spent a week in CCU and has been stabalised and we are now waiting for a transplant. Last year I came across a articale by Doctor Cox at Stanford and he has been using high doses of vancomycin and gaining remission for his patients. Unfortunately for my daughter her PCS had progressed to far. The Mayo in Rochester is now conducting clinical trials but at much lower doses that Dr. Cox has used in his treatment. Dr. Cox seems to be happy to talk to PCS patients. If you are interested or have any questions about either treatment let me know. I hope that you will not have to go through what we are experiencing with our child.
Hi. I’m new to this forum. I notice your post is a bit old but I just wanted to try and connect. My son is 15 and recently diagnosed with uc. His liver enzymes are elevated so they are concerned about possible psc or auto immune hepatitis. His ultra sound and MRCP were abnormal but not indicative of either disease. We are holding off on ERCP for now. The doc wants to try immunosuppressant medication in a couple of weeks to address the colon inflammation. Fortunately he hasn’t and doesn’t have any symptoms. How is your son doing?