Toddler with PSC

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Permalink Reply by Stacy on February 8, 2012 at 5:39pm

While I'm much older (24) than your son -- I've found that vanilla pudding helps when my UC is acting up. I also found that milk and lettuce sometimes cause me nausea. When I was in Children's Hospital when I was 14, they suggested cooked green beans.

 

Sorry I can't be of more help! But know we'll be praying for your son and your family!

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Permalink Reply by Stacy on February 8, 2012 at 5:47pm

I thought of something else! LEMONS. Whether it's lemon-water, lemonade, putting lemon juice on food ... lemons, lemons, lemons! I recently started drinking lemon water and my liver numbers in my bloodwork have decreased. I've done some research and talked to several healthcare professions ... and lemons help liver function.

Hope this helps!  :)

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Permalink Reply by alimac on February 11, 2012 at 6:14pm

G'day,

My 8 year old son was diagnosed with Crohns, PSC and autoimmune hepatitis last July.  He's had 2 setbacks after almost achieving remission in October - both related to an intolerance of Imuran.  He had a rapid decline in liver function and we discovered a fistula.  He started on 6 mercaptopurine 4 weeks ago, and seems to be doing better.

In terms of diet, I'm happy if he eats...  It's a struggle to get him to eat anything at all.  He's below the 1st percentile in height and weight.  Since his diagnosis, I have become much less concerned by quality than I am by quantity!  Which means I'm less likely to hassle him to eat fruit and veg than I am to just be pleased he's eating something!  We don't eat much processed or take away food, but I'm conscious of getting extra calories in whenever I get the chance.  Milk, raw fruit and raw veg are apparently not great when people with crohns have flare ups (high fibre and lactose in milk), so we avoid those sometimes.

There doesn't seem to be many parents out there with kids under 10 with crohns or UC and PSC.  I hope you get the clear vision you seek!

All the best,

A

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Permalink Reply by Ellie on February 18, 2012 at 9:51am

Hi, I hope you and your family are coping with PSC. people with PSC can have a deficiency in vitamin B, A & E.  Talk to your doctor about those.  I try to avoid things high in fat (Don't cut it out completely as your toddler needs some fats to grow)  I avoid things like fish & chips, chicken skin, and fat on things like steak.  The reason being that it causes more pain.  I wish you all the best.  Regards Ellie.

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Permalink Reply by md_fisher on April 11, 2012 at 2:19am

My 6 year old (born 2005) was diagnosed with PSC almost one year ago. She's had a colonoscopy to see if she had UC but it came back negative. We've asked several doctors and nurses about a modified diet to better manage the PSC, but there isn't anything. There could be for UC, I don't know.

If you have any questions, please feel free to write.

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Permalink Reply by PSC Mommy on April 11, 2012 at 8:23am

I think and hope my son is finally on remission. He was taking 6mp in compound form but it wasn't working, so the doctor changed to half a pill a day. So far so good. Still waiting for some blood work results. But I did find out one thing he can't eat, this kind of chocolate he ate. Also I did spoke to a nutricionist, and she said it's basically try and error process, try different foods and see what's good for him. She did say to avoid hot peppers, jalapenos, brocolli, and beer.

As soon as I get any news I'll post here!!

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Permalink Reply by Janaina Daltrozo on May 10, 2012 at 10:15pm

My son is now five years, was diagnosed with cholangitis to six months, their food has always been as natural as possible, avoid as much food dyes, preservatives, fat, canned foods, sausages, candies, chocolates .... At first it was easier to control the power but now the other kids in school and the media have a big influence, but we tried everything possible to keep his diet as natural as possible, which is helping ta not develop the disease.

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