My Brayton was diagnosed with Minimal Change Disease in November 2016, a week after receiving his first flu shot and after being misdiagnosed with pink eye. We made the trip from our local hospital, who misdiagnosed him, to Peyton Manning children’s hospital, where he was officially diagnosed and treated with steroids via IV. My child was so swollen at this point, after being diagnosed with pink eye and sent home, that he could barely walk. He had to be placed on oxygen and had fluid in his lungs. Because the swelling went down after an albumin treatment (though it wasn’t even close to normal), the hospital felt he was well enough to go home, but he was still barely urinating and his blood work was still way out of wack. I voiced my concerns about him swelling right back up and pointed out he was still having labored breathing, but still we were rushed out of there with a script of oral steroids. I was scared and confused about what was going on with my son, but we made the trip back to our home and our daughter.
The following morning, I woke up to my son swelling almost more than he was when we took him to the hospital, so we rushed him to Riley Hospital for children. I explained the whole ordeal, and they could not believe my son had been released in the condition he was. He was immediately admitted into the fifth floor stem cell transplant unit, where we spent the next two months trying to get my son into remission, and getting him to respond to treatment, period. He ended up having a central line put in where he received Lasix, steroids, and albumin, trying to get his little swollen body back to normal. Nothing was working. He would lose the weight after albumin, but then swell right back up. It was so scary, and heartbreaking seeing my son poked, prodded, and so sick.
Hospital life is hard and stressful, especially when you have other kids at home and are missing work, worrying about bills and your sick child. Finally, his doctor decided it was time for a biopsy, just to determine exactly what kind of Nephrotic Syndrome we were dealing with. It was scary having my son go under for the biopsy, but he miraculously entered remission a few short days after the procedure, as if his kidney being picked apart shocked his kidneys into working again. The doctors can’t explain it. However, I know it was all the support and prayer chains we had going for him. Only God did that. It was the worst and scariest time of my life.
Since then, my son has been on steroids the entire time except for three months. He’s currently been off steroids for one month; however, he is currently in a relapse because of a sinus cold, and we find out Monday if we have to start again. He’s been on tacrolimus twice a day as well, which is a patience medicine, the same thing as Prograf, and also Lasix when needed. We have had stays in the hospital since the first time, because, when he relapsed, he would not respond to oral medications. We have had five relapse hospital stays: two weeks, one week, three days. Gradually, they became shorter. He has had two relapses at home with no hospital stays, where he barely showed symptoms, just a little bit of puffiness above his eyes and a 3+ protein level. It resolved and he entered remission at home.
He also has to maintain a strict low sodium diet, no more than 800 to 1000 mg a day when he is in remission. We try to make it even less when he is in relapse. Most of the time, it is a cold or sinus infection that sends him into relapse. He gets horrible diarrhea and it takes weeks to get him well, so in the winter he lives in a bubble to minimize relapses. It kills me not to be able to take him everywhere with me (out to eat, grocery shopping, around other kids), but I know it’s essential for his health. So many changes have been made since his diagnosis, from getting rid of our microwave (no processed food) to eating only frozen veggies, and he can only eat fresh meat, no Bologna, hot dogs, deli meat, or processed cheese. Thank goodness he loves any fruits and veggies, and things normal toddlers would not eat. It’s like what he likes are the foods that are okay for him to eat with this disease. We do labs once a month when he is in remission, and every week during a relapse, as well as urine dips once a week when he is in remission and every day during a relapse.
It’s funny how much your life changes when your child is sick. How you go from being carefree to literally worrying about everything, from germs, to his diet, to making sure he doesn’t miss his medications and they are on time, to making sure his urine output is normal. But we have found that what seems so stressful and like such a change turns into the new norm, and you are just thankful to be able to care for your child and have him still with you and close to you. This disease can be scary and unpredictable, every case is not the same, but I love my son’s doctor—she’s amazing. Even during our hospital stays, the nurses are amazing, and the phlebotomists who do his lab work are amazing. I know my son is in the best hands and we are not in this alone. Brayton is a trooper, and loved by many.