Lisa's Page

WOW! I dont even know what to say. I am sure that is very hard to deal with. I assume you stay home with her? Does she take medication? How did you even find out something was wrong? My son was diagnosed at 11 months old, very long story i will try and make it short. He had been really sick with Roto Virus and a double ear infection we could not get rid of. One saturday he woke up and his eyes were really puffy and I noticed his diaper was not wet at all. I called his doctor immediatly and she wanted to see him. She told me that she thought it might be Nephrodic Syndrome that we needed to take him to Childrens immediatly. The admitted him, ran all kinds of tests on him. He had large amounts of blood and protein in his urine, so they did a kidney biopsy where we then confirmed it was NS. Hard to explain but it is autoimmune so his immune system attacks his kidneys, in turn make him spill protein out his urine. This is dangerous because protein is what circulates through your blood to carry toxins and wastes to you kidneys and they filter. His body has trouble with this because he leaks protein out his urine, he has very little to absorb and then everything goes to his tissues which cause him to blow up like a balloon. He is on all kinds of immunosuppresives and steroids. We just had a biopsy on his left lung last week because he has had fluid on it since December and they were beginning to think he may have Non-hodkins lymphoma. We find the results out Thursday. Do you guys go anywhere to meet with other parents like us? Does your daughter ever go to childrens medical center?
Jen