Hi, Does anyone else have a child that struggles with low energy even though the diseases are being managed (both UC and PSC)? Blood work looks okay while on meds. Ten year old child.
Thanks in advance!
What medicine is your child taking? Does he sleep well at night? What diet? I think everything plays a role. My daughter was diagnosed half a year ago. Now she takes prednisone (5mg) imuran (50mg) Urso, Vit D, and I give her silymarin … before the treatment she was really bad, now she’s fine now…i Hope it will take so long (6years) Psc/AIH/IBD
Mcdona,
What does your sons most recent LFT labs look like? Unfortunately PSC does take its toll on energy levels. Make sure he rests when he gets drained of energy. Depending on his levels he’ll have better days than others. I assume he’s not drinking sugary drinks a lot.
Mark
Hi, Thank you for your responses. She is on Pentasa, Vanco and Urso. I think she sleeps well. She doesn’t have a great diet (picky eater/eats small meals/snacks). I try to limit sugar. tomavera, do you have your daughter on special diet? fcmmark, here are labs:
ALT 29 unit/L
AST 45 unit/L
ALP 360 unit/L
Bili total 0.2 mg/dL
Alb 4.9 g/dL
GGTP 21 unit/L
Total protein 7.2g/dL
She really doesn’t have much endurance and tires easily. Thanks in advance!
he has no special diet. but sweets are forbidden. A child at 6 years old (or at 10) is hard forced to force them to eat healthy things. from vegetables most cherry tomatoes (day and 300g), cucumber and pepper. fruits apples, daily box of raspberries and blueberries, banana. I cook from the beginning, a lot of soup, white meat, fish … just as much “living food” as possible … in kindergarten she eats what they have there, but at home I’m strict. Try to give her the sylimarin, and a lot of water and fruits and vegetables that she likes at any free time …
it will definitely be better.
Mcdona,
At some point, it can be a good idea to graze throughout the day-small snacks… instead of a normal breakfast, lunch and dinner. But it can make getting good nutrition a bit more difficult.
I did that A LOT.
Jeff
Hi, My heart goes out to you. 
My 15 yr old son has psc + Chron’s. His labs are fine now. He took vanco for about 3 months only - right after his diagnosis with PSC 1 yr ago. He has been on the SCD diet for 2 years now & his GGT has been normal ever since the round of vanco. Energy levels seem fine at this point, whereas before things were under control his energy levels wee super low. I’m a believer in the strong role of microbes (bacteria & fungi + a genetic predisposition) to PSC & IBD. It’s worth looking into a strict SCD diet to help control the liver disease. You could consider doing a little digging into the diet. Seems to make a huge difference in remission. And it’s not easy, unfortunately, but it might make a huge difference.
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Hi Jeff, Thanks. Were you not hungry for full meals? You mention grazing. Trying to understand what our daughter is feeling. Yes, I worry about nutrition at age 10. She has no problem eating a lot of sweets, so I am confused about how she is feeling appetite-wise. Appreciate your help!
mcdona
Frogsnot, Thank you so much. I’m glad that your son is doing better. I’ve heard a lot about diet, but held off making changes because she is a picky eater. I will revisit though.
Thanks again,
mcdona
McDona, at some point, my appetite diminished greatly. An average meal was just not appealing. So I started having multiple snacks throughout the day. Those I could handle.
I will concur with Jeff on what he went through with his appetite. Before I had my transplant, I was eating less than my 9 year old of a meal. Hadn’t referred to it as grazing, but that is basically what I was doing. Few pieces of the meal then I was not hungry anymore. I also felt nauseous sometimes before eating.
Hey Mark!,
Thanks for the forum and thanks for helping community. I am new here and still investigating.
I have just one question what did you mean by this? I assume he’s not drinking surgery drinks a lot.
I thought enteral protein food like Nutricia or Ensure is good for additional support for liver…?
Hi i have daughter, PSC-UC (UC fro age 1 and psc from age 8). She is on Vanco. I have noticed that she has ups and downs with energy levels and it is sometimes tottaly unrelated to food…at leas i think so. We are forcing light mediterainina diet with normal ammonut of sweets …black choco mainly…
I know this is late reply but she has problems with energy sometimes…i dont know why but her blood results is great.
Matthew,
I think I’m late answering your question. It was a misspelling. I should have said not drinking sugary beverages instead of surgery.
Mark