portal cavernoma

[fizzer]

my gran daughter has portal cavernova and has attended birmingham childrens hospital several times it is rare in children has anyone else who could share info with me about this condition

[AyrshireK]

Such a shame for your grand daughter to suffer from this condition. It is not something i'd ever heard of before although my husband has had banding and variceal bleeds due to portal hypertension. I had a quick look up of portal cavernova and it seems it is something to do with malfunction within the portal veinous system and causes symptoms the same as portal hypertension including variceal bleeds etc.

I found a study on line which was done in China and it details their findings as to what goes on with this condition. Quite a bit of med speak in it but you might glean some information from it. hindawi.com/journals/grp/20...

Birmingham have one of the major liver transplant centres so your grand daughter is in good hands if this becomes something which gets considered in the future.

Wishing you and your family all the very best,

Katie

[fizzer in reply to AyrshireK]

Thank you so much she had banding but might need a shunt she is only 2 and a half hope ur husband gets better philip

[Bolly]

There is a forum on HealthUnlocked for the Children's Liver Disease Foundation. Have you asked on there?

healthunlocked.com/cldf