2 year old has PFIC just had a biliary diversion drain, looking to talk with anyone who has gone through this

[Stacian]

Hi all, my 2yr old had a biliary diversion drain just over a month ago. At first it helped with her itching now it seems to be gradually getting worse. She drains about 15-20ml per day bit the cost sisterly and colour of bile has recently changed. She is becoming more jaundiced but Dr says her bloods are stable... Nobody is paying any attention to my concerns and I would desperately like to hear from anyone with some information regarding this

Thank you

Stacey

[Carvellkm]

Hi I haven't any experience of your situation but their is a group on Facebook called liver mums someone there will be able to give you some advice.

[Stacian in reply to Carvellkm]

Thanks for the help but I am not on Facebook x

[Hidden]

Hi Stacey, This must be a very worrying time for you. If it is your GP saying not to worry I would suggest going to your consultant for advice. I don't know if you receive information from Children's Liver Disease Foundation, if not please do get in touch and I can send you out information and offer support where I can.

My contact details are: [e-mail] Tel: [phone]

With best wishes - Jacquie

[Stacian]

Thank you for your response. It was actually the consultant at Birmingham that was in orange my Concerns. It wasnt u til her local consultant saw how jaundiced she had become that they have actually began to Investigate amongst being severely anaemic, and her vitamin levels being low her bilirubin has raised from 54 to 85 in 3 wks, they now feel her drain is not working. 2 wks on from being Informed of this and still no feedback from Birmingham as to what they are going to do for her now.

[ak717149]

Hi Stacey, sorry to hear about the latest update on your daughter's drain and that her itching is back. How's she doing now? Did you finally get any feedback from Birmingham? I hope you don't mind me writing to you, as my 15 month old daughter has PFIC 2 too and has also been recommended to do the drain. I'm terrified, fearful and hesitant now after reading your post amongst others regarding the PEBD and would deeply appreciate it, if you could share more with me... Stay strong and all the best for your little one! Thank you!

Ash xx

[Stacian in reply to ak717149]

Hi ash, I am so sorry if anything I have said has upset you or made you hesitant about the drain.... If we had not tried we would not have known it wouldn't work. We would have tried anything to help molly and I am sure you feel the same. We were terrified if u read my previous posts.. I was also desperate for any information... I am happy to give u any information you want and no questions are off limits please feel free to ask whatever is on your mind.. In regards to molly her itching is still very bad. We are going to Birmingham 5th november for the transplant assessment... The drain is draining more in the last week so we are waiting to see if it makes any difference to the itching fingers crossed... On a positive note.. She is an amazingly cheerful and happy child dispite it all.. And she has started in playgroup and loves it xxx

[Stacian in reply to ak717149]

Also I apologise if I do not reply very quickly. On here I work shifts and don't always get. The notifications... I am happy to exchange emails mails I am much better at responding to them 😊 xx

[ak717149 in reply to Stacian]

Hi Stacey, please don't need to feel bad about your posts or apologise for your delayed replies. I'm already very thankful for your openness and willingness to share any info with me. I really appreciate it very much! Also very glad to hear that Molly is cheerful and happy despite it all. Children are more resilient than we think they are.

I do have quite a number of questions. Would it be more convenient if I email them to you? Or should i write them here instead?

Anyway my email address is: [e-mail].

Thanks a lot again! xx