STACEY my 2 yr old has PFIC - Children's Liver ...

Children's Liver Disease Foundation

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STACEY my 2 yr old has PFIC

Stacian
Stacian

Hi All xx

This is my first time here, I won't go into all the details but my 2 yr old daughter has PFIC 2 and is due to have a biliary diversion drain put in next week. I am looking g to speak with any parents who have already undergone this process. Or anyone who has a child With the same condition... Hope all your little ones are well thank you

Stacey xx

10 Replies
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Hi Stacey, welcome to the group...

Our son has (had) PFIC 2. He didn't have biliary diversion but he has had various treatments over the years and is now doing well after a liver transplant which has given him so much energy and relief from symptoms.

All the best for you and your daughter in the journey ahead and would be happy to chat if that would be any help.

Stacian
Stacian in reply to Sarah100

Hi Sarah thanks for your message. I am so glad to hear your son is doing well. May I ask why he did not have a drain?... Why They felt the transplant was the first choice?

Thanks x

Sarah100
Sarah100 in reply to Stacian

I'm not sure to be honest, I think they always thought he would need a transplant at some point so after various medications for itch etc and several years he went for transplant.

Stacian
Stacian in reply to Sarah100

Thanks for your reply, I'm glad your son is doing well. I wish they would have just gone for a transplant with molly but they want to try the drain first.

How old was your son when he had his transplant if you don't mind me asking x

He was 5. Difficult to know when would be the best time - if possible, we wanted him to be able to understand in some way what was happening, and for the operation to be as safe as possible. In retrospect there would have been advantages to having the operation earlier, but we made the decision that seemed right at the time which is all we can ever do I guess!

Jamiemack81
Jamiemack81 in reply to Sarah100

Hi Sarah, My son has PFIC type 2 aswell. He is 22 months old and has extreme bother with itching. Did you have the option for partial external biliary drain?

Did you push for the liver transplant or have the option for when the liver transplant could be carried out? My sons liver functioning blood tests are coming back ok with the medication he is on but is under the 9th centile for weight and height and struggles to maintain vitamin E, even with his monthly injections.

Sarah100
Sarah100 in reply to Jamiemack81

Hi, we discussed external drainage but our consultant advised transplant instead after various medications hadn’t really helped with his itching. We definitely had input into the timing of when he went on the waiting list. He was tracking the lowest centile for years and is now on the 9th post transplant - it’s all relative! Intense itching is terrible - I really feel for you and your son and hope you find a way forward which feels right for you.

Hi Stacey, how's your daughter doing after the PBED? I hope she's doing well and that her itching is now gone. My daughter has PFIC 2 and is 15 months old. Her doctor has recommended PBED to manage her itch. I hope you won't mind sharing your experience and thoughts about PBED with me. Would really much appreciate that.

Ash xx

Hi Stacian, My son has PFIC type 2 aswell. He is 22 months old and has extreme bother with itching. He is on all the medication he can get and gets vitamin E injections every month as his liver seems to struggle with Vit E more than the others. How is your daughter's vitamin levels? My son hasn't had a partial external biliary drain or liver transplant assessment yet but feel this may not be far away.

Does the partial external biliary drain help the itching? Do you have any problems / difficulties with this?

Also how is your daughters growth getting on? My son although he is almost 2, hes only the height and weight of an average 1 year old and his healthy older brother has been generally been above average in size / weight throughout his infant years.

How do you feel about the whole thing? Part of me wants my son to get a liver transplant ASAP to see him healthy (particularly when hes having a bad day) but the other part of me doesn't want to put him through this major operation.

Any feedback would be appreciated.

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