I know this long but we are reaching to everyone in hope of finding an answer. No child should go through what Manda has gone through and going through.
Manda will be 9 end of September, she had aortic coarctation that was fixed after birth, then she was diagnosed with biliary atresia at 4 months old and had kasai surgery done (removal of Gallbladder and the ducts and connection of liver to intestine). At 11 months she received a liver transplant.
Initially she was taking prograph and had a lot of skin issues when she was taken off of prednisone. After a few years the skin got worse to the point of open wounds all over. She was cramped up in fetal position and stop going to the bathroom with a lot of muscle pain. She ended up on high dose of prednisone for 10 days or so and switched to cyclosporine and celcept and she did much better but skin issues were still there however not as bad. Her liver values were perfect when her cyclosporine levels were at 60-70 but for unknown reasons with no increase in her dose here levels rose to 120 Couple of months ago skin got increasingly worse and headache and stomach pains and back to open wounds on her body as well as her scalp oozing and infected along with muscular pain. At this point she was on 0.6 ml bid (100mg/ml) celcept 0.6ml bid (200mg/ml)with decreasing cyclosporine to 0.4 ml her liver values were still within normal limits but her condition got worse. Back to muscle pains and cramping and not moving at all. Not even able to walk to the bathroom.
Skipping AM dose of cyclosporine she was able to walk in the afternoon.
She was put back on prednisone in the hospital and they held back cyclosporine.
Skin improved very fast and she was back to normal. As they introduced Sirolimus (Rampanune) 0.5 mg and decreased prednisone within a week her symptoms are back, skin is rough and red and very itchy starting to breakdown her muscle pain is back. And her liver values are not as great. Her Sirolimus levels were 2.7