Posted by flyahead in Children with FSGS Friday February 22, 2008 at 10:42 AM EST
Hello,
I joined the community approx. a week ago. The every changing world of FSGS is a hard one to learn. When I think I understand, I find something that says you have more to learn...
My daughter, 16 was diagnosed with FSGS just a few months ago....I noticed some swelling in her lower legs and I mistakenly told her that she needs to lay off the chips and drink more water....that advice didn't help, and I really believed that she was not following the advice correctly. So I took her to the dr because she felt I didn't know what I was talking about. I thought it would be a 15 min. visit for the dr. to tell her that "mom knows best"....instead it was a 1.5 hour visit, with lots of questions, and the dr. leaving and making calls, coming back with more questions....in the end, we had to go to the hospital for lab work, and she had to start a 24 urine collection.
The next week, we were in a nephrologist office, I had never heard of a nephrologist. Now this was the second dr. who (in less than a week) told my daughter, don't listen to your mother's advice. We were so close to the holidays, that the dr. suggested that we wait for the New Year and then pull her into the hospital for a biopsy. That was done and before you know it we were off to UNC to see a pediatric nephrologist. She was diagnosed with FSGS, collapsing. She was put on HCTZ (for the edema), liprosil (???), 60mg prednisone, baby aspirin, and a multi-vitamin.....She has been complaining of muscle cramps in her hands and feet. Is this a sympton of prednisone? or one of the others?
She has not been in remission as of yet...but I am praying for the day. She has been on the predisone for 6 weeks now, she is being weaned off, so that she can start the next phase of treatment. She has the worse kind of FSGS, and according to my nephrologist, we have to work hard to get her into remission as soon as possible. The treatment above has helped her to go from 12G of protein down to 5G....so we are making progress...just not enough, to begin to relax.
Everything is such an event around here lately...her learning to swallow pills, because until now she only took baby liquid meds if necessary...she has been a very healthy child otherwise, no allergies, I don't know that she even had an ear infection growing up. So again, this was a big surprise.
Thanks for allowing me to vent....
And again, the question is are muscle cramps a symptom of prednisone use?
Tracy
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