I want to introduce myself, I am the mother of a boy who has overlap syndrome of psc and aih, along with uc.
It started last fall, my son, then eleven, said he had bloody stool and diarrhea. We took him to the GI, which assumed it was constipation, and put him on constipation medicine for three months. Nothing cleared up. After the three months he started having some pain and we went back and took some blood tests. The showed elevated liver values, and cytolomegavirus. He referred us to the hospital. We saw a gastroenterologist. (not sure if spelled correctly, we live in Northern Europe)and they wanted to take a gastroscopy, colonoskopy and liver biopsy. Which we did in mid March. They could tell it was UC, moderate. And a couple of weeks later they explained he likely has overlap of aih and psc. He was then put on prednisolone 40 micrograms for 4 weeks. Some liver tests improved. UC improved. But when he tapered below 20, tests got worse again. He started Imurel after a month so he’s also on that. We have started a gluten free diet, high dose vitamin d, omega3, calcium and magnesium. Currently looking into milk thistle. And pre and pro biotic. I am making fermented drinks for him.
He has fatigue, joint pain, and 10 kg weight gain. Depression because of everything. Currently on 17.5 prednisolon.
We are lucky when it comes to transplants to a certain degree, one month waiting for a transplant and I thing they do it before you get too sick. We have a national research center for Psc, which is very lucky. But I understand they don’t transplant after 65, and is restrictive when liver cancer has developed.
Glad i found this group, it’s very good to communicate with others with the same issues.
Annie,
Welcome to our group. I’m sorry your son has developed PSC at such a young age. For many of our younger patients the disease often progresses quite slowly, so hopefully he has many years before talk of a transplant is needed. I do hope they can get him off the Prednisone at some point. It is most likely the source of all the weight gain. I was on high doses of it after my transplant tapering down over a one year period post-transplant. But it does give you a really big appetite.
Encourage your son to stay as active as possible. I would also encourage you not to constantly draw attention to the disease. Let him live a normal 11 year old life, running, playing, being with friends and family. When the PSC rares its head, deal with it then. That will do a lot to get him out of this depression. It’s not the end of the world, and he has a full life ahead of him filled with hopes, dreams and aspirations. Please feel free to ask any questions that come to mind. We are here to help you in any way we can.
Thank you, and as for your advice, it is really good. Unfortunately I haven’t been able not to draw attention to it, but we are getting there. The prednisolone is responsible yes. He was slightly underweight, so it is not critical, but he doesn’t feel right. He tries to continue soccer.
I feel this is so unfair. We have nothing of this in the family ever. So unexpected. There are so many things he wanted he now can’t do. But I try not to focus on it. It gets easier.
So I went over some notes I made of the bloodtests last week.
His GGT is up, to 467.
His Alat is down, to 37
Asat is up from 55 to 138.
His Alp is 219
His Billirubin is in normal range for now.
Lots of iron after blood infusion.
Any opinions?
Annie,
The bilirubin level is arguably the best indicator of liver trouble. The other levels ALP…will likely be high but don’t sweat them too much.
To further what Mark said, I think it is best for pscers, if they can at any age, to try their best to live a normal life. Sometimes that might be difficult to do especially if and when a symptom arises, but I am glad you are close to a research center for psc.
Since your boy is a kid, there’s no point looking at ALP (ALP is elevated when kids grow). Of the tests you mentioned, GGT and Bilirubin are the numbers to look at to see how he’s PSC is progressing.
On a side note, it’s great for your boy that you live in Norway! I live in Sweden, where health care is useless.
We get to travel to the research center annually, or maybe 2 or 3 times a year. Not clear on that yet. They are located with the only hospital that does liver transplants in this country. They do one houndred a year, I read.
Andreas, I thought health care on this kind of chronic desease would be somehow the same in Sweden? Naive of me probably.
I surely think that we’ll be able to live normal lives once this is processed. I am now really focusing on not mentioning it to him, before he starts talking about it.
Haha oh gosh no, nothing really works in Sweden since the welfare system pretty much has collapsed. It’s like Detroit in the US. The largest hospital in Sweden has three GI doctors who are supposed to treat several thousands IBD and PSC patients. If you want to see the doctor in Sweden, it takes a loooooong time.
Shocking. That must feel so stressful. Get a job in Norway and you’ll be in our welfare system pretty quickly… Although I think there’s a difference here between children and adults. We have pretty free access directly to the hospital and monthly check ups there. But we are newly diagnosed.
There is unfortunately no way to predict how this disease progresses. The only things to do is keep living one day at a time, trying not to think too much about it and hope for the best!
Annie
Just re the steroids. Hopefully your son is taking them in the mornings. Pred makes you bounce of the ceilings and makes it hard to sleep so the depression and fatigue may be contributed to if he is finding it hard to sleep at night.
When i first got sick I was on 70mg of pred and weened down to about 50 for 2 yrs. (They treated me from crohns but got that wrong as it was UC).
Yes, every morning. He’s sleeping quite well.
Spoke to the doctor today. She said his liver-results (blood) are fluctuating, going up at one point, down the other. Only constant is billirubin, well within normal range.
They upped his Imurel hoping for effect. And schedules an Mrcp, new bloodtests and a psychologist for next week.
Thank you. I don’t know what to say. I am not used to be entitled to/justified to people saying they feel sorry for us. It’s work in progress. You probably know what I mean?
Annie,
I know you are from Europe and I certainly understand what you mean, but I want you to know that this group of patients and families living with PSC are a group of very loving and compassionate people. The figure of speech “I’m sorry for you…” to many means our heart goes out to you, we are sorry you have to suffer so through these trials of life, we wish we could take your pain so you did not have to bear it alone. It’s not an entitled response, but our hearts of empathy towards you. Please know of all of our continued support and concern for you and your dear son.
Welcome to the group. I’m sorry you had to find us. I commend you for seeking resources to support your son. He is a lucky boy to have you!
My husband’s PSC was discovered when he was a young boy. My in-laws have talk to me about their hearts aching for their son during those early years. They worked tirelessly at keeping up their spirits for him, which allowed him to focus on being a “normal kid”; all the while they suffered in silence. They allowed him to direct the conversation about his condition. He wanted to not talk about it. He wanted to continue to play soccer and that’s it. So that’s what they did. When he needed to take his daily medicines and go to clinic they made it all very normal for him.
As hard as it may be, I hope your family is able to create a sense of normalcy and your son is able to find peace within himself.
Yes, we are finding normal life. We have a heatwave here with temperatures twice of normal and new records. He goes swimming every day after school, plays soccer and hangs with friends. He’s quite happy these days, and we are down to 15 prednisolon and up to 75 imurel (I think you call it Imuran) we stopped by the hospital today with a stool sample for calprotectin. I am really hoping that treating the UC will soothen the psc and aih.
He’s given me credit for backing of the constant focus on desease. Thank you everyone for explaining how important that is.
We (he’s) doing very well at the moment! One month of being in great shape. His bloodtests are coming back better, and lots of energy. Mrcp tomorrow, exiting. Went to a psychotherapist today, (just to check in, to make sure he has the right tools and is coping) and she was impressed by his mental state and reflection. So great, I feel he is in a really good place.
