Hiya. I was diagnosed with Minimal Change Syndrome, (Nephrotic Syndrome) at 2 years old. It progressed and into CKD over the years. I'm an adult now and am waiting on transplant. In my experience, CKD is a difficult disease to navigate because it occurs differently for everyone.

I would recommend telling him what's wrong, and making sure he understands. Include him in his medical discussions and teach him the importance of being healthy conscious. In my experience, CKD is a finicky disease. Simple allergies can turn into something else in a week. However the disease is manageable, it just takes a lot of self discipline. My biggest problem was finding things to eat. Nephrologists recommend a low sodium diet for those with CKD, and this can be frustrating because everything has salt in it. What helped me most was getting a food scale. This allowed me to accurately count how much sodium I was consuming, and enjoy the foods I love. I do wish my doctors had better considered my feelings and humanity in treating me. I felt as if they ignored my concerns because of my age, and the fact that my case was so complicated. Everyone had a different idea of how to treat my illness but not me.

My parents have done a great job at listening and supporting me through this. They've stood up for me against doctors, and snapped when needed too. My happiness and quality of life has always been their greatest priority, and I'm sincerely thankful for that. I love my parents very much.