Intro as a new member

[Guest guest]

I am a relatively new member (I have been reading the emails over the

past week or two). My son, Philip (just turned 14 years old and in

the 8th grade) began bleeding rectally last January and after several

tests was diagnosed with Ulcerative Colitis. His lab work showed very

high LFTs so the doctor also suspected PCS. The PSC was confirmed in

early March with a MRI cholangiogram and a liver biopsy. He was

scheduled for the ERCP procedure but the doctor decided to go with the

less invasive MRI procedure which clearly showed the characteristic

beading of the ducts. He experienced fatigue however I think most of

that was the blood loss from the UC which was not under control until

July despite lots of medication. In July his hemoglobin was below 8

so he was rather anemic. My son is quite an athlete and refuses (the

doctor said if he can do sports to continue) to give up the sports.

Even when he was terribly anemic he was playing baseball although not

running the bases with much speed. Currently he is playing soccer.

He is taking prednisone (20 mg every other day) (although they are

trying to wean him off of this because it has caused terrible acne and

at this age this is devastating), asacol (4400 mg daily), imuran (75

mg daily), and actigall (although he is only on 600 mg and seeing the

larger doses has me wondering).

My most frustrating aspect of this disease is not knowing how quickly

he will progress to a point where he will not be able to be very

active. Also whether the downhill trend starts suddenly or is

gradual. In reading through the emails it seems as though everyone is

different. As Philip's Mom I want to be able to help him plan for the

future and this adds quite a kink in the picture but we are positive.

He is seen by a wonderful doctor at the Children's Hospital of

Philadelphia (about 1 hour from our house - Unionville, PA). Although

I have emailed a few of you separately my other question is whether

children with this disease tend to progress faster to transplant or if

their disease seems different than what is seen in adults.

I am glad to be part of the group. I sometimes find it challenging

reading through all the emails but I find them very insightful so it

is well worth the time. If anyone has any ideas on anything I

questioned please let me know.

Sue (Philip's Mom)

Diag UC + PSC 2000