Living with Nephrotic Syndrome (NS)

In July, 2007 my 4 year old son was diagnosed with Nephrotic Syndrome. We were on vacation and originally assumed the signs (extremely swollen eyes and legs) were simply allergies or maybe the result of a bug bite. We called our pediatrician and luckily for us she had seen one case of NS before and was able to essentially diagnose it over the phone. We immediately returned home, took my son to the ER, and he was admitted to the hospital that night. Being a community hospital, most of the nurses had never even heard of NS. He was immediately placed on a high dosage of steroids which carries its own issues. My normally happy 4 year old became extremely emotional, his appearance changed, and he began to eat and sleep like a teenager. All when back to normal and the docs took him off the steroids after two months - that was early September, 2007. We were told to expect relapses and to keep checking the protein level in his urine. We figured a relapse would happen sometime down the line so we were both shocked when last week, less than a month after being removed from the steroids, his protein level was again through the roof. He is now back and steroids and this time we are told it will take six months to ween him off. The side effects of the steroids are taking form once again. My wife and I completely understand and appreciate that in the grand scheme of things, there are many worse things that our son could be going through. That being said, it is still hard to see our four year old change physically and emotionally.