1) I am consistent with her treatment. Always on top of her to make sure she has taken the medicine. She is on an ace inhibitor to help protect the kidneys and minimize spilling of protein. We check urine daily and weight every couple of days. Also try to stay under 1500mg of sodium a day.
2) Get support- reach out to other parents for advice and support. Find a Facebook group or Nephcare. The folks I have interacted with understand what I am going through as their child is in the same boat. The frustration levels are high especially for us that are just starting out in this journey. We have a great church and have received great spiritual support which I think is also very important.
3)ask questions, do your research. Be informed, ask other parents how the meds have worked for their kids. If something doesn’t seem right call the doctor. Doctors are human and not all treatments work for the same child. My doctor gave my daughter two ace inhibitors and she doesn’t have high blood pressure so I was concerned that her blood pressure would decrease too much. He assured me the dose was low enough that it shouldn’t cause a decrease to her blood pressure but it did. We has to stop one of the meds. When my daughter started to spill more protein he wanted to put her back on the second med and I had to remind him that her blood pressure went too low. I suggested if we could start her on a 1/4 of the dose of the second med and he was fine with that. So don’t be afraid to speak up.
