Re: anyone had these sxs/ problems ??

[Guest guest]

> I asked this on another board for parents of liver kids but nobody

else seemed to have these issues- any takers here ?

I don't know what most of those symptoms are (yet). I'm " green " with

PSC as of yet. The only ones I recognize are the slow GI bleed (my

son has been bleeding with bowel movements since December 1st,

although, it's intermittent rather than constant/daily since he

started the probiotic he's taking (on Jan 23rd). Also, the FAP cancer

risks, I recognize, of course. I posted to you on the PSC moms

board --our sons both have FAP and PSC, although my son doesn't have

short bowel syndrome as well. (I'm working backwards on this board

trying to read posts and catch up --see if I can maybe keep the pace

eventually on here --if you posted this on PSC moms, I've missed

it). Oh, I see another syptom I recognize -my son has bacterial

growth due to his UC, but I don't believe it's chronic (at the moment

it is, but from what I understand we can get the UC to go dormant for

periods of time -I think, so it's not truly chronic). I'm still

learning about everything, sorry. FAP I know well, but all the rest

is quiet new to me. OH!~~and I recognize the crazy mom symptom, too!

How is your son's FAP going? Is he growing adenomas yet ( & what

areas)? I noticed one of the symptoms you listed said 'possible

polyps'. I wish I knew more, had some knowledge to share so I could

help. That's a long list for your son --I'm very sorry. How long has

he had all 3 conditions?

--Meghan, mom to Wyatt (UC & PSC 1/07: FAP 8/01: ?'s?)

[Guest guest]

>It just seems like Braden's presentation is different than most PSC

kids ??? and I was thinking maybe he is more similar to adults with

PSC ???? I don't know why it really matters except that I am looking

for how things have unfolded with others KWIM ?

I completely understand looking for how things have unfolded for

others. That's where my mind is at constantly since we found out last

month about PSC. Is your son stage 1 and having all these symptoms?

-Meghan, mom to Wyatt (UC & PSC 1/07: FAP 8/01: ?'s?)

BTW, Lori, we're taking Wyatt to UCSF for a consult/2nd opinion later

this month. We're going to be focusing on what interactions we may

have from the FAP with the new conditions, appropriate meds for the

combination of conditions (making sure one med that great for one

doesn't do harm to another condition's progress, that sort of thing).

I will be happy to share with you all that I learn about FAP's possible

or anticipated interaction with PSC. It has been of great concern to my

husband and I how the multiple conditions may interact as well as how

the meds for one may do harm in regards to other conditions.

[Guest guest]

I was trying to be silly! I was so tired I probably did not present

it that way. LOL! I was trying to make light of my loco-ness. tehe!

Love you,