The Two Words that Forever Changed My Life: Nephrotic Syndrome
I’m not typically a blogger. In fact, I’m a busy momma. I work full time and teach part time online (because I love it and it takes me away from all other things going on in life, and gives me time to focus on something I love doing). Today, I’ll share a little bit of my journey over the past 4 years. It’s been nothing short of a roller coaster of tears, anger, and anxiousness. Although the tears are much less these days, the fear, and anxiety I hold will never go away.
At the beginning of the year 2016, we started to notice our little man, Micah was swelling in his face a lot. Around his eyes, his cheeks, even his belly looked a little bigger than normal. He was growing out of clothes within a week of me purchasing them. We visited his pediatrician who explained he was having seasonal allergies. We tried Claritin, Allegra and a few other over the counter allergy medication, but the swelling kept coming back. We probably were at the dr 4 times a month trying to get answers. During this time, Micah would also complain his belly hurt on and off randomly. He is a growing boy, so I thought, man this kid is hungry. Over the 2015 holiday, many family members mentioned how heavy he was, and my mom noticed his little ankles seemed a bit swollen, but because I see him every single day, it wasn’t too alarming to me. Finally, in June, his daycare teacher called after his nap time. She explained he was so swollen he could barely open his little eyes and she was concerned. She mentioned there was no fever, and no ‘need’ to come and pick him up right away but she wanted to make me aware of what she was noticing. After nap each day, he was super swollen and as he played the swelling seemed to go down. It was a Tuesday, so I gathered up work and left to pick him up. At this point, out of frustration from hearing him complain yet again that his belly hurt, I took him to a new urgent care facility that wasn’t too far from our house. I called my husband and explained that something was wrong, and I felt like no one was listening to me or my concerns. No, he didn’t have a fever, he was eating and drinking fine, he was happy most of the time, he played normally, but there were times where he just didn’t seem like his normal self. The Dr. of this urgent care listened to me as I teared up and explained that I felt no one would listen and that I knew something was wrong with my baby. He finally asked, ‘Do you think he will pee in a cup?’ … he has just turned 3 but had been trained for the potty since before he turned 1. I explained I had no idea, but I would help him, and we would make it work! We did, and surprisingly Micah loved every second of urinating in a cup… boys, am I right? Thank God he loved it because I never imagined that he would be doing it daily, and possibly for the rest of his life. The Dr. took the sample and in about 15 minutes came rushing in with paperwork to head to the nearest ER. I was in complete shock. I knew something was wrong, but did we really need the ER? He explained that Micah had high levels of protein in his urine. He explained that protein was supposed to stay within the blood stream to help rid the body of fludis, and toxins, and not escape in high levels through the urine. He did explain that when we get sick, generally our bodies ‘spill’ a little protein through the urine as our immune system fights off infections etc., but not at the high level that he saw in Micah’s urine, and not to mention, Micah wasn’t even sick or trying to fight anything else off.
After I gathered myself from the shock of being told to go to the nearest ER, I called my husband and explained the situation, where we were headed to. He left work (which at the time was 1.5 hours away) and met me at the ER. When we arrived, they had already received the papers from the urgent care, had a room ready and went right to work. They placed an IV, drew blood, took more urine, ran tests. We sat and waited. My mom and grandmother came to the hospital. My grandmother has always been very close to me. Around midnight, finally a dr came in and explained there was something not normal with Micah’s kidney’s. They needed to transport us to the downtown hospital where there were kidney specialists, as they didn’t have any at the hospital that we were at. Well, the downtown hospital had a fire, so we waited almost the entire night. Around 5 am, we were transported by ambulance to the downtown children’s hospital. All the while, Micah loving this experience because he LOVES emergency vehicles. We get downtown and are taken right to a room where they had already admitted my sweet guy. More blood work, more urine, not much sleep. Around 9 am the dr came in and explained that he had something called ‘Nephrotic Syndrome’ and that they were going to be placing steroids into the IV along with an antibiotic to be sure that the steroids don’t cause a fatal stomach infection. I didn’t have much choice, as I’d never heard of this before, so we went for it. We stayed 4 long days at the hospital. Learning about this syndrome. There are different diseases associated with Nephrotic Syndrome. They diagnosed him with Minimal Change disease. There is also FSGS and a few others that he could potentially have. There is no specific treatment for this syndrome or any of the diseases that are associated. They have treatments that ‘work’ to get the patients into remission so that they stop spilling protein, but none of them were specifically created for this syndrome or any of the diseases. Then finally I hear ‘Also, there is no cure currently. We will do what we can to get him into remission and then we will have to find something that works to keep him in remission’. Can you imagine the devastation of hearing that there is no cure to some disease that your 3-year-old apparently has? The anxiety of trying to figure out what that means? I had no idea at that moment it meant that at some point in his life, his kidneys could fail. When protein is ‘spilled’ through the urine, it scars and damages the kidneys. You see, within the kidney there are the tiny little guys called podocytes. You’re born with as many as you’re ever going to get (kind of like sperm with men). They don’t regrow once their gone, and guess what happens with the diseases associated with Nephrotic Syndrome? The podocytes basically melt away when that protein spills into the urine.
So where do we go from here? We were told that Micah needed to stay on a low sodium diet, that way if he did relapse, he wouldn’t swell near as bad. By low, I’m talking 1500 MGs per day. If you don’t already look at labels when your shop for food, just take a glance. Look at the milk label. Everything single thing has some amount of sodium. After I got portions correct, I realized I could make many of his favorites, with a big side of vegetables and fruit. He loves fruit, and salad to this day which is a huge relief. We do pizza once per month, and we might eat out 1 time per week, or every 2 weeks. He is 6 now and does love a good happy meal occasionally like a regular kid. So, diet has been hard but has helped us all in the family. We were also send home with a prescription for steroids. He was on a very high dose of steroids twice a day for a few months. Then we would try to wean him from the steroids and see if he would stay in remission. The steroids are the worst thing I’ve experienced in my entire life. Imagine having a 3-year-old who is just now learning proper behavior having to take steroids twice per name. Tantrums because nonexistent as we had out right rage mode. I created a safe space in our home with a yellow chair and a book called ‘Finn Throws a Fit’ … we finally got to a point where each time he felt he was going to get out of control, he would go to the chair. He could scream, cry, punch a punching bag, kick it, and let out his aggression. Then, we would read the book and I’d ask him to show me which pictures he felt like. It took a lot of time to get to that point. Finally, we were ready to wean. It had to be a very slow wean because of the high dose he was taking daily. We got to the last 2 weeks of the weaning, and he relapsed and started spilling protein at the highest level possible again. His dr immidiatly told us to go back to high dose of steroid 2 times per day. This happened at least 4 times. Each time, he would regain remission within 4 days, but we could never get him completely off the steroids. His dr finally decided to try a second line medication. It’s an immunosuppressant medication and I wasn’t excited to try it, but with no other options at hand, we went for it. Once he regained remission, we added the 2nd line medication, did a slow wean from the steroid once again, and got him completely off the steroid. Too bad the remission only lasted for 2 weeks… sigh… what next? Another 2nd line medication. Back on steroids, keep the 1st immune suppressing drug going, and add this one twice per day. So, he was now taking 3 meds, twice per day, and 2 were suppressing his immune system. Also, since steroids can potentially cause a fatal stomach infection, anytime his fever is 100.4 or higher, we had to bring him to the ER right away. We weaned the steroid AGAIN… he stayed in remission, Thank God. He is now also taking Iron twice daily, a daily magnesium supplement, and 1000 units of vitamin D due to his weekly, yes weekly (down town mind you), blood draw revealing low levels. As the weeks went on, he remained in remission and to this date, 18 months later, remains in remission. He is now only taking the 2 immune suppressant medications, and magnesium. His iron is normal levels, his vitamin D is still a little low, but only must take that 3 times per week. Currently, we are getting ready to wean him from 1 of the immune suppressant medications. I can’t pray enough that he stays in remission with the 1 medication. I’m praying with everything in my being we will be ok. If he does ok, he will stay on this last medication for 1 more year. Then he will wean, and we must wait and see if he stays in remission. If he doesn’t, there is only 1 other option to try which involved IV infusion medication, that many have had allergic reactions to and a few days in the hospital. It’s basically our last option right now.
Along our journey, in 2016 (November) my grandmother had a massive stroke. She was left paralyzed on the left side of her body and needed full time care, so my mom took care of her for about 1 year and even bought a wheelchair accessible home for her. Then in 2017, August, my mother was diagnosed with cancer. She underwent surgery to hopefully get it all, but it didn’t work, so she had to go through chemotherapy, and radiation treatments. Luckily, 2019 has started off with a little less worry, stress and sadness. My mother and my son remain in remission. Micah’s first year of kindergarten has gone exceptionally well considering his immune system is suppressed and he is around many illnesses and germs daily. Along my journey I found Nephcure Kidney International. They are a non-profit company with about 19 employees. Their mission is to find a cure and better treatments for patients that suffer with Nephrotic Syndrome and the related diseases. Please let me know if you have any questions about nephrotic syndrome, or NephCure Kidney Internal. All funds rasied will be donated to them in hope that within the next few years, we will have a cure for this disease. There is no known cause, and only about 16 in 100,000 children are diagnosed within this condition. Thank you to RARE. For all the support. Let’s find a cure for this disease and protect those podocytes!
With love and care,