My son is 22 months and was diagnosed w/ NS in early Feb of this year. We are still waiting on a firm diagnosis but I was wondering if anyone has experience with changing their diet to help the kidneys to stop leaking protein. I have read that you should avoid dairy and animal protein, but not sure if anyone has any success stories with a diet change... any info would be helpful. Thanks!
My daughter was diagnosed with NS in January of this year. The only changes to her diet were low to no salt foods. That helps tremendously with the water retention. My doctor also suggested no more that 16oz of milk per day. He also wanted her to stay on a 2000 or less calorie per day diet to help with the weight gain from the steroid. My prayers are with you and your son!!
I asked that exact question today of my neph!
she said that reducing protein is only for esrd pts, and only under extremely rare cases would they ever recommend it for children. by reducing the protein, in theory , it would reduce the by product of uric acid ( that comes from breaking down proteinin the diet) and hence could harm the kidneys of a esrd pt. not a nephrotic.
so, all that leaves us with is a low sodium diet (which she has been on for 4 yrs)...
but I definitely see foam in her urine as the day progresses but in the morning she is negative! makes no sense, b/c her urine is always far more dilute during the day.. My neph had no comment on this although she has heard it before....
hope this helps!
Thanks for the info.... we are still at 3 plus/4 plus with his protein... but his kidney function is still really good, so for that I am thankful.
We switched to soy milk for a bit. That seemed to reduce the amount of salt per day. Trader Joes ROCKS for low sodium stuff...no salt tuna, l.s turkey meat, tomatoes with no salt, low sodium chicken broth. ect. Check out their website first for a listing of their products.
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We have asked out nephrologist about a dietary change including protein but she said that it was only in rare cases that they changed the protein intake. If you reduce protein intake then the body will take it from muscle tissue and they are loosing enough of that if they are taking cylosporin. Just low to no sodium. Ask you doctor for one of the kindey cookbooks! They are great and helped us a lot.
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