hi all, looking for a little advice. my daughter is 14 and has been complaining for past few months of feeling nauseous and she is itchy.. I have confirmed PBC and thought kids don't get .. does anyone know of young sufferers and am I worrying over nothing ?
thanks in advance for any advice xx
If the pbc is auto immune and people of any age can suffer auto immune issues then it would seem that anyone of any age could be a sufferer.
But no idea if i am correct
i am 19 and have it but it started awhile ago maybe when i was around 15 sooo.....
I was diagnosed at 16, it is unusual for someone this young but it is possible
jess1990--I see your profile picture with 2 sweet babies. Are they yours? If so, did you have healthy, full-term pregnancies even with a pbc diagnosis?
Hi my eldest is 6 now and she was born a couple of months before I was diagnosed, my son is 4 and he was born quite premature with complications, it was a very upsetting time. Both these pregnancies were before I started the urso medication. I recently had a miscarriage in february at 6 weeks, I stopped taking the medicationas soon as I found out but I guess it was to late. Its very unlikely that I will be able to have any more children as I get ill without the medication but I consider myself blessed and very fortunate to have had lillie and paul early. It might be different for each person but hope this helps.
Hi jess.. My hepatologist says it's perfectly safe to take urso throughout pregnancy. Hope this helps.. He's very knowledgeable. I'm in North East England and he's well known throughout the UK in his field.. He's leading research into the condition. Unless you're on an alternative medicine?
Ps you're lucky to have two beautiful kids.. I'm 34 and hoping to have kids.. It's been a struggle.. But I've other conditions as well to complicate things.
My consultant said that its not advisable while pregnant, ive looked into it myself aswell and everything ive read says it causes problems. Im not sure whats right anymore but thanks anyway
jess1990-- I have a 4 year old boy too (first and only child). Due to a placental abruption he too was born premature at 33.5 weeks. They couldn't find his heartbeat right before they started the emergency cesarean section and he wasn't breathing when was born. He ended up being in the NICU for 20 days. This was also before I was diagnosed and on urso. The little reading I've done says that pbc, itself, is usually the culprit for miscarriages and premature births. My GI doctor, obgyn, and internal medicine doctor all say that urso is safe during pregnancy. (I'd like to have another so I've been asking around.) When is your son's birthday? (Matthew's is 12/6/2009.) Hope to hear from you!
Just be careful about getting her diagnosed so young as this could affect her chances of obtaining a mortgage, life insurance etc.
well isnt it better to know if your sick or not....in my opinion a mortgage isnt worth more than a diagnosis. Also I wish i knew way before i was 19 as i have pbc and aih and also itp and my liver is in stage 2...if i got a diagnosis earlier i wouldnt be at 2 ....the sooner you get treatment the better......thats just what i think :S
I agree , i hope with all my heart she does not have it, however i would prefer if she did then her health comes above her financial standing 
What are the grounds of the diagnosis? What exactly do the blood tests say, and has she had ultrasound, fibroscan, etc etc to double check?
Hi GrittyRead,
She hasn't been diagnosed , I have.. I am concerned as she is showing symptoms.
Did not intend to infer that early diagnosis is not important but it may also have other implications. At a PBC Foundation conference a speaker suggested to be cautious as the stigma of cirrhosis can prevent companies offering mortgages and insurance etc. Hopefully with a name change so that cirrhosis is no longer part of the title these problems will not occur. If your daughter is showing symptoms then obviously a diagnosis and getting her on Urso will be to her advantage. Good luck
thanks everyone xx
angel74--I have asked my GI doctor about potential child(ren) having PBC because of me and his was response was that he thought it would be highly unlikely that my children would get PBC specifically. He did say they might have a higher chance of getting a different auto-immune disease, especially for a girl.
Children who are in growth sports and pregnant women will have elevated ALP so PBC is one of those concerns you really don't need to have! Autoimmune diseases usually effect adults except for those that are allergy driven and more colon related! Children can be born with defects of the bilinary system and have similar symptoms! This whole thing is complicated and always exception to the rule!
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