My 9yr old son was diagnosed with sclerosing cholangitis and ulcerative cholangitis last month and we don't know what quite to expect.

[LizNatt]

He went from 4.5 stone down to about 3stone in 6 months and has just been release from the RVI newcastle after having a really bad flare up. Can anyone shed a little light on what we should expect and future things to come. He's also just started a 3 months course of steroids alongside his normal medication, what side affects should I watch out for. Thanks we're feeling very confused! (and a bit lost)

[ag200412]

Hi, my son was diagnosed with autoimmune sclerosing cholangitis when he was seven and was diagnosed with ulcerative colitis last summer, he will be 10 next month. He is on medication for both conditions which seem to be keeping everything under control. We don't really know what to expect in the future, and have not meet anyone in the same position. Hope this helps.

[LizNatt in reply to ag200412]

Thanks for your reply. From what I can tell its quite an unknown disease, it seems our boys are round about the same age ( mines 10 in December ). It's horrible not knowing what the future holds.

[Becky01]

Hi there - my 14 yr old is now 18 months following diagnosis for SC and UC - we're under Birmingham and they're keeping his symptoms largely under control with meds - the teams there (and I would guess everywhere!) work really well together so we don't have to go too many times! CLDF have been amazing on the Liver side, as have CICRA for the UC - you're not alone!

[netty182]

My son was 9 when he was first diagnosed with the above. He is now 26 and really really healthy following a liver transplant at 16.

He lost a lot of weight, couldn't eat and was really yellow for a few months, then they managed to control his condition with medication for a while. Then after that he had a lot of ups and downs health wise but after the transplant it has been all "up" and has never looked back.

[Zoe9]

Hi, my daughter has sclerosing cholangitis aged 8 and being investigated for ulcerative cholangitis. I would be interested in how your child and the children of others who have replied to you are doing now? I believe it's very rare so would be nice to connect with others in a similar situation. Thank you