Congenital Hepatic Fibrosis

[NickandAJsMom]

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

  

[mrahman123]

Hi Nick. I am suffering from CHF since birth. It was in my 19th year that I had shunt surgery due to portal hypertension. I am now 31. I have been told to take URSOFALK everyday and Lactulose but I am irregular. Complications  and risk factors to avoid: Obesity, contact sport, Alcohol, Smoking. I thank Allah, that He has kept me fine until now. Pray to God and keep hope high....Do routine blood test for Liver, Kidney and Lipid profile, which I do.

[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

[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