Babygirl has been most fortunate when it comes to handling all the various meds she's had to deal with over the past year. The phosphate binder didn't bind her. No problems with iron, vitamins, and hormone adjusters. The new anti-rejection protocol doesn't make her hands tremble, cause nausea, make her hair fall out, or any of the other potentially far more dire side effects (so far).
Except the prednisone.
It's a life-saving drug, I know. But its short-term side effects can be miserable. When Curlygirl needed it to treat her asthma, we referred to it as "Demon Possession in a Bottle." Usually by about the third day she would start throwing food at the table, and once or twice I think I saw her head spin. When I was on it in 2010, it caused mood swings and hot flashes that made menopause seem like STABLE time period in my life. You can ask any of my children, and they'll tell you that I was NOT stable during menopause LOL. The drugs long term side effects can be disastrous. Cataracts, obesity, diabetes, osteoporosis, thin skin - it's a long and ugly list.
Babygirl is going to be on prednisone for the rest of her life, although at much lower doses than she started on. She has been fortunate in that the drug does not make her moody, although it does make her hyperactive. The cataracts, diabetes and osteoporosis we have to keep observing for.
But she has the weight gain.
When Babygirl was diagnosed she weighed about 103 pound, if I recall correctly. Her "dry weight," the weight after dialysis, was around 98 pounds. During her time on dialysis she grew only 1/2 inch.
Since the surgery February 3rd, she has grown another 1/2 inch, gained a shoe size, and put on nearly 30 pounds. The first ten pounds were absolutely needed to catch up from a year of being ill. Another 2 match the height gain. The rest is settling on her belly and face, and since she is a normal American adolescent girl, she is becoming unhappy about this. Her BMI (Body Mass Index, a ratio of height to weight adjusted for age) has risen from below the 25th percentile to above the 75th percentile - not obese, but a huge jump.
Her legs are also swollen. The accounts for a little bit of the weight, and is a combined side effect of the prednisone and amlodipine, which she takes for high blood pressure (oh, that one can cause swollen gums, too!). This makes her feet hurt at the end of the day, especially while walking back and forth to school . We could, of course, drive her one or both ways, but then she'd lose her main source of exercise, which would then add to the other problems.
We spent part of Saturday shopping for new clothes and shoes. It was not a fun time. Aside from the "I'm fat." "I can't believe I need a shirt this size." and "Mom, look how swollen my legs are!", she got very tired long before we found every thing we needed.
She's in Philly with her dad seeing the doctors now. It will be interesting to see whether restarting school with its attendant increase in activity will have had any impact on these problems. She continues to decrease the amount of prednisone she takes, and that will (hopefully) also help.
I raised one child with an eating disorder. I'm altogether too aware of the kinds of comments that trigger food avoidance, and we are starting to hear them from well-meaning people. "Wow! You've really put on some weight!" is really never, ever okay to say to ANYONE. No one I know would even consider saying such a thing to an adult, so why, may I ask, do people think it's okay to say to a KID? Especially a 12 year old girl?