Congenital Hepatic Fibrosis

Hi all.... I'm new as is my 22 month old son who was just diagnosed with Congenital Hepatic Fibrosis. I am in Canada and seeking as much information about treatment, prognosis and support from others or their families with this disease.  He has Portal Vein Thrombosis, Splenomegaly, Esophageal Varices to only name a few of the other medical issues he has.

Any and all assistance is appreciated :D

  

[mikesimon]

Congenital Hepatic Fibrosis is a rare and very complex disorder. I believe the scope of your question is beyond the ability of the members here to address. Infrequently a physician does visit this board but we do have a Med Help Liver Transplant Board with an expert physician to answer questions. I will provide you with the link to that forum and I advise you to post your question there.

I do want to wish you and your Son the very best.

See:   http://www.medhelp.org/forums/Liver-Transplant/show/274

Mike

[eureka254]

CHF is a rare condition, and the best place for him to be seen would be a large tertiary center that could handle his multi-disciplinary needs, like a large University hospital.  

You might find some helpful and supportive information at the CHF Alliance website:
http://www.arpkdchf.org/aboutus/index.htm

Best wishes to you and your son. ~eureka