While I was on vacation a couple of weeks ago I got a phone call saying that my grandson Aidan was at the doctor because he was having kidney problems. He was a healthy happy two and half year old and he had swelled up and put on 10 pounds of water weight. My heart sank. I don't want anything bad to happen to Aidan!
He saw a pediatric nephrologist (kidney specialist ) the next day and was diagnosed with nephrotic syndrome. His kidneys are leaking protein into his urine. Because the protein is being lost there is not enough protein in the blood which causes fluid to leak out of the blood vessels into the tissue and cause the swelling that Aidan experienced.
I've been doing a lot of reading on the web sites my daughter, Shannon pointed me towards. I've learned that Nephrotic syndrome can be caused by a number of diseases. They hope his is caused by Minimal Change Disease. The treatment is daily doses of the drug prednisone, a steroid. The best web site I have found so far in my reading is the Nephcure site. Minimal Change Disease Nephrotic Syndrome is fairly rare. The doctor told Shannon that most doctors will only see one or two cases in their careers. It mainly occurs in children between 1 and 5 and happens more often to boys than to girls. Apparently the steroids work for many kids but the chance of relapse is high. The good news is that most kids grow out of it by about 12. Because steroids suppress the immune system one of the many worries is that Aidan will be very prone to infections while he is on the prednisone.
I remember how horrible it was when my 9 year old daughter (Aidan's Aunt) was diagnosed with diabetes. You just don't want anything bad to happen to your kids. You want to protect them and a chronic disease that requires constant monitoring and vigilance is overwhelming and very scary. Aidan's Mom and Dad are trying to deal with this one day at a time. They have to test his urine for protein every morning. Of course that is not an easy thing in and of itself when you are dealing with a 2 year old who is still working on toilet training. Apparently prednisone tastes bad so getting it down him can be a struggle too. He will be on steroids for a while. If he goes into remission they will wean if off the steroids but will continue to test his urine daily. If he has a relapse he will go back on the steroids.
I get a knot in my stomach every time I start to read about all the bad things that could happen but I am really trying to think positive and not worry about things that haven't happened yet. I know that worrying doesn't help. But that doesn't help much.
I also know that my worry is nothing compared to what my daughter is going through. I know she is an amazingly smart, strong and determined person and she has a great network of supportive friends and family. Aidan will get through this.
Marion's Blog 