Ada went off prednisone the first week of June, just in time for girls camp. She had a whole 2 weeks off and then she got sick - something along the lines of strep, but not strep. Anyway, she started spilling protein and swelling up, so I called the University today and they said back on prednisone she goes, just in time for scout camp next week.
In all this I am so grateful that the biggest disruption in her life is the need to watch her sodium intake and remember to take prednisone during the EOD schedule. Otherwise, she is able to go about life as normal, playing, learning, and growing as any child should.
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She responded well to the prednisone and is now on an EOD (every other day) regimen. She'll finish the taper the first week in Aug, and hopefully she will be protein free when she sees the Dr.
Hi. Stumbled accross this page :) my son was diagnosed nov11, have you got a facebook page? Would be lovely to speak with someone else who knows the ups&downs x
Jennie - I do not have a facebook page, but if you look to the right side of the blog you will find information on how to contact me by e-mail. I have talked to a couple of really nice people as we share our experiences.
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