Psc diagnosis for son/ question

[Guest guest]

Hi, my son was diagnosed with PSC when he was 5 years old in December

of 2002. He is not on a list for a transplant because his liver is not

that bad . His last biopsy showed some scarring still, but not likeas

when he was first diagnosed. His UC has not come back since an early

treatment with prednisone. Does anyone know any stats on if the need

for a transplant is always the outcome of this disease? Thanks

[Guest guest]

As far as stats, I don't know-I am sure someone will chime in though. PSC is one of those fun diseases that truly affects everyone differently. It is a possibility that your son could lead a very normal life with PSC and not have any symptoms (I so hope this for you and your son). My brother's worst symptoms with PSC has been the Jaundice, but as the PSC has progressed, fatigue, moodiness, confusion/forgetfulness has chimed in. I know there are people here in this group that have lived 20+ years symptom free. So yes it is possible that your son could be one of the lucky ones. It is certainly something you should always be aware of, and watch for symptoms.

Good luck to your son living a very healthy active childhood!!!!!-Brother, , 30, UC & PSCOn 2/12/07, chandlergwc

wrote:

Hi, my son was diagnosed with PSC when he was 5 years old in December

of 2002. He is not on a list for a transplant because his liver is not

that bad . His last biopsy showed some scarring still, but not likeas

when he was first diagnosed. His UC has not come back since an early

treatment with prednisone. Does anyone know any stats on if the need

for a transplant is always the outcome of this disease? Thanks

[Guest guest]

Hi " chandlergwc " ;

As already mentioned, the course of PSC seems very variable,

and it is hard to predict how rapidly or slowly it will progress in any

individual. Some " stats " have been published for children with PSC, and

the " median (50%) survival free of liver transplantation " seems to be

about 12 to 13 years - data from:

Feldstein AE, Perrault J, El-Youssif M, Lindor KD, Freese DK, Angulo P

2003 Primary sclerosing cholangitis in children: a long-term follow-up

study. Hepatology 38: 210-217.

This implies that some children (about 50%) can need a liver

transplantation in less than 12 years after diagnosis, and some (about

50%) can go much longer than 13 years before transplantation might be

needed. The follow-up of less than 17 years in this study did not

permit determining if/when the latter patients may eventually require

liver transplantation.

Let's hope that your son is one of the lucky ones whose PSC will

progress very slowly.

Best regards,

Dave

(father of (21); PSC 07/03; UC 08/03)

> Does anyone know any stats on if the need for a transplant is

always the outcome of this disease?