Our son is 11 years old, plays rep sports and has always been an overly active and happy kid. Just recently at a tournament we noticed him being a little tired and didnt have an appetite. A few days later he went quite yellow.
We took him to the doctors and they did ultrasounds, mri and bloodwork. It appears that his small bile ducts are narrowed. They arent sure yet what they can do.
I am just getting started on this site and hoping to find some ways to deal with the intense itching he has been experiencing.
After we can calm that down, im thinking maybe diet will help.
They currently have him on ursodiol, we tried the rifampin for his itching but it made him lethargic and decreased his appetite even more.
It has been very hard watching our young boy go from running the stairs and playing sports several hours a day to being to tired to play a single game, Hes lost 15 pounds and has a hard time sleeping through the night with the itching.
Im glad I found a place to assist in helping him deal.
Max,
Sorry your dear son is having issues with his bile ducts. What you describe sounds like PSC. Have they spoken about doing an ERCP procedure on him to clear the ducts? If they do decide to proceed with that please make sure an advanced endoscopist does the procedure. This is a very invasive yet very effective procedure to bring temporary relief to patients with blocked bile ducts. I say temporary, only if he has a definite diagnosis for PSC. Other factors can also cause duct blockages. Sorry the Rifampin didn’t have the desired outcome. They have other ways to help with the itching. I would encourage you to make sure you have him under the care of a hepatologist, not an ordinary GI doctor. You can find a hepatologist at any major hospital that does liver transplants. They are specialists in the diagnosis and treatment of liver diseases. I wish you and your son well and please don’t hesitate to ask any questions you may have. We are here for you and willing to help in any way we can.
Mark, North Carolina
PSC 2011 / Liver Transplant 7-2015
Sorry your son is going through this. Is the diagnosis small duct PSC?
For itching, cholestyramine is another medication that is commonly prescribed and may be better tolerated. A short term solution to get him through the night is Benadryl before bed as a sleep aid.
A number of pediatrics and adults, myself included, have had luck treating this disease with oral vancomycin (see http://sm.stanford.edu/archive/stanmed/2011spring/article6.html). There are a number of good threads on this site discussing this treatment option.
Thanks, they said that he has narrowing of the small bile ducts and have assumed PSC, we are waiting on the second set of mri and bloodwork to come back to set a plan in motion. They are saying they want to do a brushing of the bile ducts and ercp, from there the person doing the operation will make the call to balloon or stent as he sees fit (they say this is normal)
We are at a loss right now, it’s hard seeing your child like this
Max,
Everything you have described about their plan of action is very normal. They are doing exactly what they did to me over the years. The only thing that I would question, and there again every situation is different is in regards to inserting stents. I always had the same physician do my ERCP’s and he was adamant that he would not put stents in unless it was absolutely needed. The reason being, the stents will just clog back up with the stricturing that will occur due to the PSC and if that happens the stents create a point where infection can occur. Again, it sounds like he is under excellent care so I wouldn’t necessarily worry, you just may want to bring that point up as a consideration. It’s pretty common as well to do the balloon dilation with contrast while they are in there. It certainly brings some good relief howbeit it is only temporary with PSC, yet in the early stages he may be find for a year or more before another intervention is needed. Again, when his bilirubin starts climbing again and itching increases, that’s a good indication another ERCP may be soon needed.
Your son is in good hands. I know you hate to see him like this, but please encourage him to live his life as normal as possible. His body will tell him when rest is needed, but he needs to just live and be a normal kid. He’s got good potential and with continued excellent care he has a very bright future for good outcome, whether with or without a transplant.
Please let us know how he does and we are here for you if you need us.
Does anyone have ideas on how to get him sleeping through the night? He is always waking up around 2am itchy and irritable, then he has a shower, uses the Aveeno itch cream and eventually gets back to bed, this normally takes about 1.5 hours.
We are on day three of a modified diet, cutting back on processed sugar, white flour and heavy carbs. Mainly lots of fruits, veggies and low fat protein like chicken and turkey, fish, etc. It seems to help a bit.
He loves smoothies but I don’t know about all the yogurt,
I just want him to get back to being himself, it kills us to see him sitting around, playing video games and watching tv.
Max,
Knowing what your dear son is going through, it’s difficult especially for me to see a young person dealing with this disease. I would ask his hepatologist about an alternative to the Rifampin since he had a reaction to that. Honestly, I never had much success with any over the counter creams or lotions. They just did not bring any relief to my itching. It sounds like his bilirubin levels are quite elevated and he may need another ERCP to really bring any substantial relief to the itching. You might try a good dose of Benedryl at night. That may help with the itching and will make him sleepy enough to hopefully stay asleep. Make sure he doesn’t have so many covers over him that he gets too hot. That only exacerbates the itching. If he’s ok with it, just some shorts and no shirt may help when sleeping. Regarding his diet, I’m sure what you have mentioned is fine but keep in mind with PSC that there will be some smells and tastes that he just can’t stand without getting nausea. My hepatologist never restricted my diet. Let him eat what he wants to when he’s like that. Protein is important but if he’s staying active don’t force that on him all the time. He’s in it for the long haul so it’s going to take time for him to figure out what he likes and can eat. Good exercise, just out riding his bike, running, swimming whatever to stay active is very very good for him. Core strength will be critical to maintain as the disease progresses. You can always put some yogurt in those smoothies. He’ll never know what changed Take care and God bless.
I am sorry to hear that your son is having such struggles. Concerning diet every body is a little different. My doctor and I found that when I limit my sugars, dairy and red meat that I do much better from an itching stand point. If I need a smoothie with protein I use a plant based protein. Over time you will begin to see what is most helpful for your son. You are in a great place to get support and help. Keep your head up.
I am sorry to hear about your son’s disease. Our daughter was diagnosed early this year with PSC-AIH-UC at age 11. I understand the diagnosis is overwhelming, but it is not a death sentence. We’ve learned to trust our doctors. Without our doctor’s guidance and help, we would be completely lost. Slowly the medication started to help our daughter. As Mark stated, find a hepatologist over an ordinary GI doctor. When we found out our daughter had liver disease on top of the ulcerative colitis, the GI doctor referred us to the hepatologist. You found a nice place in this forum. God bless your son.
Mike, Wisconsin
Hello, my son was recently diagnosed with UC and his liver biopsy is showing possible PSC. We haven’t done the ERCP yet. Fortunately our son is not symptomatic of either at this time. I am just so distraught over this diagnosis and I am finding it hard to be positive. How is your daughter doing?
Cassidy,
I am sorry to hear about your son and I wish you the best with the test results. I understand how you feel as when we started out a year ago, we were completely overwhelmed. Slowly, with guidance from our hepatologist, our daughter is doing fairly well, considering where she started. Her liver numbers have been in normal ranges since September and she is now getting blood draws every 3 months, so we pray they stay in normal ranges. Her UC symptoms are OK, not great, but OK and she manages fairly well. It took some time to balance the medication. Our daughter is very good at taking her medicine. Our daughter is active at school and plays sports and I believe for the most part, feels good. We pray it continues.
Mike
Thank you for responding. I am hopeful that he will remain well for a long time to come. This is just so difficult to hear. I am glad your daughter is doing well overall. Sending positive thoughts and prayers to you all.
Take care and God bless.