Jaidyn S.

Child, Minimal Change Disease

During the later part of 2014, my daughter began to experience extreme puffiness around the eyes. She was already diagnosed with asthma, and now this. We went to the pediatrician. One of the first results he read to me was the results from her urine specimen. He stated she had traces of protein and blood. Her doctor assured us that it was probably from her wiping too hard. She was prescribed Singular, and we went on our way. It was March around this time, which is pollen season for the state of South Carolina. I followed her treatment plan.

Around mid-January of 2015, the swelling in her face became worse. She wasn’t able to open her eyes early in the morning, and it barely went down by the end of he day. So back to the doctor we go. He mentions protein and small amounts of blood in her urine again. However, this time he refers us to an allergy specialist. The journey begins to allergy testing and allergy shots. We went through a year of close watch of her asthma and allergies with her new doctor. The puffiness of her eyes never subsided. In May of 2015, her allergy specialist suggested adenoid removal due to sleep apnea. She had her surgery. At this point, I knew the up and down of her health was at an end.

A month after surgery, all was well! No interrupted sleep or difficulty breathing at the end of the night. My baby has always been my chunky baby. A good ole round belly and full face. Well, at least I thought it was normal. A few weeks after her surgery, she started complaining of belly pain. My mommy radar goes off and immediately thinks it’s just a stomach bug. We go back to her doctor, and hear the same results, protein and blood in urine. Her doctor has a second doctor studying under him. The young man asked me, “How long has her stomach stuck out like this?” Well, my baby is just a little plushy and cute. He went to examine her ankles and face again. He talks to the head doctor and they come back somewhat frantic. The doctor tells us we need to get blood and lab work done immediately. We go to the hospital; they take her blood and complete an ultrasound. My mind and body experiences a range of emotions, but I quickly remember where the source of my strength comes from.

The next morning her doctor calls. I answer the phone. Her doctor begins to go over results from ultrasound and lab work. He diagnoses her with Nephrotic Syndrome, and explains to me what it is. My heart literally fell to the floor. A rush of thoughts flooded my brain. How did she get this? What did I do wrong during prenatal care? Did I do something wrong when she was a baby? Is it hereditary? The flood of emotions transformed into a flood tears. He refers us to a local nephrologist in our hometown. He explains everything and begins a steroid treatment plan. She starts her first round of steroids in the summer of 2015. It’s pretty overwhelming, but it’s working. She goes into remission.

School starts and here come the germs. Jaidyn catches a cold and relapses. This happens about 5-6 more times, and she becomes less and less responsive to steroid treatment. This continues to happen up until the summer of 2017. I make a gut decision to seek a second opinion, and locate another doctor. We find a pediatric nephrologist near my hometown, which was an hour and 30 minute drive from our home. The drive didn’t matter; I needed answers. We were able to schedule an appointment. A week before her appointment, my daughter began to experience the worse swelling episode. Her face, limbs, belly, and private area were completely filled with fluid. The belly pain worsened, and she experienced a difficult time walking. The new doctor provides treatment of steroids (60 mg) and Lasix. She also talks about the next steps. This brought a smile to my face and a solution to the problem. Jaidyn would need a biopsy if she continues spilling proteins on steroids.

On September 20, Jaidyn started her steroids and Lasix. She dropped 18 pounds of fluid. I’d never seen my baby girl so tiny, and full of energy. Everything was great and my baby felt amazing. On October 18, I received a call from Jaidyn’s school. She was crying of severe abdominal pain. I immediately go into panic mode because I know it’s her kidneys. I find coverage for my classroom, and I book it to her school. While I’m in route, her nurse calls again and says her heart rate is extremely high and we need to call EMS. I rushed inside the school building, and my baby was short of breath and in so much pain. EMS arrived shortly after me, and they rushed us to the children’s hospital.

We are met by a group of white coats and nurses when we enter the emergency department. They begin to ask me a series of questions and hook my baby to all types of machines. One of the first things I remember seeing was her heart rate. It was 149. I knew this wasn’t normal. They took x-rays and we were immediately sent to PICU (pediatric intensive care unit). The fluid from her belly began to push into her lungs. Her lungs weren’t able to fully expand, which caused elevated heart rate. Also, she had peritonitis. She was put on a BIPAP to assist with breathing. The routine of nurses poking, touching, and moving in and out of the room every five seconds was draining.

It’s day four in ICU. She responds to things like my voice, her favorite nurse, and the infectious disease doctor, who has a labradoodle (she wants a labradoodle so badly and is in love with the breed). Each day is a new day and a new opportunity for a turn in the right direction. It’s been a long three weeks, and there is light at the end of the tunnel. My daughter had her biopsy on October 30. She participated in the hospital’s Halloween festivities. It was the best feeling in the world to see my daughter be a normal child beyond IVs and hospital gowns. The best part of it all is she met a girl that has Nephrotic Syndrome as well.

On Wednesday, November 1, the nephrologist on call entered our room and read her results. She has Minimal Change Disease. Three weeks later, we are still in the hospital with unstable blood pressure. My daughter’s story is still in progress like many others, but I know she is a fighter and one of the strongest girls I know.