pred, imuran, electrical//

[Guest guest]

Quantell has taken prednisone and imuran for two years. It's a common AIH

regimen, but is not usually used in PSC. His first hepatologist (who left to

go to Mayo) started this therapy because he said that PSC in kids follows an

AIH pattern. Q's current hepatologist is not comfortable with it but is

leery about making sudden changes (and probably equally leery of my constant

questioning every time she says anything remotely different from what the

first one said). Some people have bad reactions to one or both drugs -- and

Q had several problems with the initial high-dose pred -- but there are no

noticeable side effects now. He's on 10 mg. pred every other day, and 25 mg.

imuran every day; he weighs about 50 lbs.

The current hep suggested methotrexate, but I suggested we wait until she

had read the chart more thoroughly -- Q was on that for the first 6 months

or so. It's been nearly 3 years now and my memory is foggy, but I think it

was discontinued because of the developmental risks.

On the ADD/stimulants question: Q does have ADD, no hyperactivity and no

stimulants.

He's been resuscitated a few times, so has had electrical shocks.

Identified liver risk factors for him: several major abdominal surgeries,

extended parenteral alimentation, extensive medication history.

And my personal theory -- if there's something that hits one in a zillion

people, he'll be the one.

Pam (mom to Quantell, 9, dx 1996)