I'm sorry I haven't been posting more regularly. I've been picking my brain remember what questions we had when our son was diagnosed 2 weeks before his 14tg birthday with this childhood disease that many kids his age were growing out of.
Any kind of stress seemed to trigger his kidneys to start spilling protein. Running in PE a particularly busy day at school, hanging out with his friends, performing in Choir which he loved..
We asked can food cause it? Probably not? Colds/flu allergies yes they can, routine immunizations are not recommended when either spilling protein or on steroids to control them.
The last few summers we've realized hot humid weather makes him I'll too.
It seems like for the last 2 years he's in a vicious loop of flaring up a month or so after completely tapering off the steriods so he's been on them constantly for a long time and long term prednisone use is bad, very bad.
So at 20 years of age his doctors want him to go on cyclophoshamide a chemo treatment that is supposed to stop the current flare and prevent future flares. For some patients the relief lasts years. It just a scary treatment.
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