Children's Liver Disease Foundation
1,262 members519 posts

Looking for hope and some answers

Hi all,

My daughter is now 10 weeks and she had yellow eyes at 5 weeks. We took hr to emergency room and they did blood tests which resulted in high bilirubin and enzymes number. Her doctor seemed like he knew what her diagnosed was right away but of course we had to do few other blood tests and finally biopsy. Despite the fact that she is thriving very well. Eating, pooping and gaining well, Two weeks ago We found out that she is diagnosed with PFIC2. We are going back to see her doc on Wednesday the 8th.

I'm just wondering if anybody has that or is going through the same type. What treatment did you consider? How's your child doing? It's very hard to take in knowing that your child will soon need transplant and may not live longer. We just pray and try to stay positive.

I pray everyone is coping up very well. It's really the most difficult situation to deal with .

God bless!

Hanna

9 Replies
oldestnewest

hi Hanna

I see that you in the USA. you can go to our website and download information on PFIC and I have attached a leaflet on PFIC for you. Also I would suggest talking to your child's consultant about treatments available and a dietitian about food types and supplements.

childliverdisease.org/file_...

Kind regards

1 like
Reply

There is nothing set in stone, there is always hope and if you believe in God and pray he will listen to you, leave everything on his hands and hold on to ride!

1 like
Reply

Amen to that! Yes I agree with you Joey2008! I believe that if God brings you to it He will take you through it!!

1 like
Reply

hi Ms. Hanna, my daughter has also the same condition as yours but her is Billiary atresia and only a liver transplant is the only resort to save her life. :(

Reply

Hi, do you mind me asking what was your daughter's direct bili level and which liver enzyme (GGT, AST, ALT) was elevated when they suspected pfic?

Reply

Hi Karura,

It was all of the indications were very high. Can’t remember what number exactly right now.

She is been doing good for quite sometime now and her numbers went down. But just on her last check up which was two weeks ago, the numbers especially direct bili went up high ( not as high as it first was) but still high and her vitamins levels were low despite the fact that she is on aquadexs( multivitamin) vitamin E,D and K.

So they are talking of putting her on the waiting list for transplant.

Is your baby diagnosed with the same problem?

Reply

Hi Hanna,

Thank you for replying so fast! My baby was born prematurely and only his direct bili is elevated. His liver enzymes are real good but they are testing him for everything including pfic. Was your baby stools coloured deep yellow the first few months?

Reply

Yes her poop was and still yellow. Which the doctors say it should be

Reply

Hope things goes smoothly with your daughter's transplant and hoping her bili level goes down as well..stay strong and continue praying.

1 like
Reply

You may also like...