In 2014, about a month before Jacob’s second birthday, he began to swell around his eyes, legs and groin area. His pediatrician said it looked like an allergic reaction, to keep an eye on it, and if it doesn’t improve over the weekend to let them know. Unfortunately, we didn’t make it through the weekend without having to admit him to the hospital. After a grueling wait, what seemed like an eternity, one of the doctors said the symptoms looked like leukemia (thankfully it wasn’t).
The nephrologist diagnosed Jacob with Minimal Change Nephrotic Syndrome. As he started describing what this is and drawing a diagram on the board, I began to see his mouth moving, but not digesting what he was actually saying. My mind began to wander. This couldn’t be. He’s so little. How did this happen, how could I have prevented it, what can I do to take this away, and what do you mean there’s no cure?! I glanced over and saw my boy just smiling without a care in the world (well, besides wanting that stinking IV out), but at that moment I realized this is our “new normal” and we have to move forward on getting him the care that he needs.
The doctor gave him Lasik Prednisone during his week-long hospital visit, and we switched to Orapred 15 mg twice daily once at home. They were dissolvable tablets and that is the only thing I could get him to take. Jacob’s nephrologist put him on a tapering course of dosages until he was slowly weaned off. We were beyond excited to see the urine stick show no protein! During this time, he had to make a dietary adjustments; little to no salt, which at that age, and having a slightly older sister, made times difficult, but that was the least of our worries. I decided to isolate Jacob during this time to protect him from outside germs and possibilities of getting sick, and in turn relapsing. That was a struggle, because he has always been a very social and active kid. Don’t worry though; we played plenty of his favorite sports like soccer and baseball in the backyard!
Jacob was very ornery while on the medication, which also made it hard to take him to public functions. Jacobs’s journey went from the first diagnosis to going into remission for a month, and then relapsing. It pretty much became a pattern. The Orapred was working, but we were so worried about the damage it was doing to his body and risking him becoming steroid dependent. The fact that he wasn’t able to go into remission longer than a month, two at most, really had us concerned. The doctor did not want to put him on anything different until he had a biopsy, but for us there was just no way we could put him through that. So the doctor agreed to put Jacob on a 12-week dose of Cyclophosphamide and re-evaluate after that. After a very hard deliberation between the nephrologist, reaching out to doctors from Nephcure Kidney International, and my husband and I weighing pros and cons, we decided to put Jacob on Cyclophosphamide, which is essentially a chemo drug. I had a natural birth with Jacob and have always looked for more homeopathic options for healing, so this decision was one of the hardest we had to face. We had to find a specialty pharmacy to make this medicine, and the pharmacist had never prescribed it for NS before, especially for a pediatric patient.
As I write this, I am extremely grateful and blessed to say that April 16, 2017 marked Jacob’s one year in remission! I have faith, a great nephrologist, Cyclophosphamide medicine, good nutrition, including essential oils and inflammation-decreasing herbs, love and prayers from family and friends, and a very resilient Jacob to thank for that!! Our hope is to continue to raise awareness and one day find a cure for FSGS and Nephrotic Syndrome.