Living with Nephrotic Syndrome (NS)

My daughter was diagnosed with Nephrotic Syndrome when she was 2 1/2 years old. She was on steroids (orapred), penicilin, tums, high blood pressure meds, for nearly a year straight until we took her off dairy. I had read that sometimes if children are taken off dairy that the nephrotic symptoms may improve or go away alltogether.

By the way my daughter has never been allergic to dairy infact she ate milk, cheese, etc. several times a day. Well, I was willing to try anything and her doctor agreed that studies have shown that for some reason restricting dairy sometimes works. After the appointment we completely took her off dairy. We did not ween her or anything. We just never gave her any again and she has been syptom free eversince then, which was 2 1/2 years ago. She is now 5. It was very hard at first because she did not understand why she could not have milk, cheese, pizza, icecream etc. We kept no dairy in the house. That was hard on us too, especially for my other daughter who was 11 at the time.

When I mean no dairy I mean none. Nothing with any kind of milk, whey, casein. Read All labels and if a food product does not have an ingrediant label then do not give it to your child. Buy soy milk. There is even flavored soy milk like vanilla and chocolate. Buy calcium supplements just in case the child does not like soy at first. Some orange juices have calcium as well and soy milk has as much calcium as regular milk. Also lactose free milk still has dairy in it, do not buy. It is very hard, but worth it. We still have her on the dairy free and low sodium diet because we do not want to chance a relapse. Before the dairy free diet it seemed that she would be on steroids forever because she was on them since the day she was diagnosed.

The dairy free diet is worth it. Check all foods, even the things that seem like they would not have dairy in them do. Pretty much everything has dairy in it you just have to take a longer time at the grocery store. I know your frustration. I used to stay up to all hours of the night researching for answers. It used to be the first thing I would do in the morning and last thing I did before I went to sleep. I hope this helps good luck to all of you.