When I was 6 years old I became really sick one night and had to go to the hospital the next day. The doctors did a urine test and found that there was a lot of protein in my urine. They said this is a sign of kidney disease. A couple days later the doctors did a biopsy. I was so scared when the doctors diagnosed me with nephrotic syndrome. By the time I was 9 years old, I was taking 13 different medicines. It was the worst feeling ever. Each medication had so many side effects, it was terrible. Eventually I stopped taking those medicines and started hemodialysis. After two years of hemodialysis, I switched to Peritoneal Dialysis. It works so much better and now I rarely get sick. Today I am waiting to get on an active transplant list.
As the holidays came to an end and 2017 began, HaBin started going to sleep easier at night and was actually taking naps. He was 4 years old, but had always fought sleep. He was full of energy and didn’t have time to slow down for naps or bed time. We attributed his newfound love of sleep to the business of the holidays and we sighed with relief that his sleep troubles seemed to be behind us. At the same time, he was starting to complain of tummy aches and headaches more and more frequently. A couple of times a week he would even throw up. He was prone to being car sick, so we attributed some of it to that. We then started to notice his clothes were getting really tight. We still had not connected the dots, but knew something was not right.
In early February, HaBin woke up extremely swollen one morning and threw up several times. This was the first time it was obvious to us that he was swollen and not just getting bigger. I immediately called our pediatrician for an appointment that day. In my gut I knew something was really wrong and felt we would end up at our local children’s hospital, but I hoped I was wrong. At the appointment the nurse practitioner was immediately concerned about his swelling. HaBin had gained 14 pounds. She was quick to say she suspected something called nephrotic syndrome and wanted to take a urine sample to confirm. The results clearly showed a significant amount of protein in his urine. We immediately took HaBin to our local children’s hospital where he began albumin, lasix, and steroid treatments. During our week stay in the hospital I learned a lot about nephrotic syndrome and about kidney function. We also became well known around the hospital for HaBin zooming around in the halls on a tricycle when he wasn’t receiving treatments. His energy level quickly picked back up and he no longer needed that extra sleep he had been needing previously.
While it was a long week in the hospital, it was also a very positive experience. We went home with him starting prednisone and on sodium and fluid restrictions. A little over a month later it was determined HaBin was partially resistant to steroids. He then had a biopsy done where it was determined he has minimal change disease. His prednisone was decreased and he started tacrolimus. That is where we are today. We are a little over two months from diagnosis and still learning a lot. Our family as a whole has changed our diets in support of HaBin. His big personality comes through at every appointment. He never cries when poked with a needle or given an IV, but may pretend to be asleep or even growl through a visit to see if the nurses or doctor will move on to the next patient. He takes his daily medicine like a champ. If offered a snack from others he will ask how much sodium it has and explain that his kidneys are sick. His big brother brags to others on how brave his little brother is.
We do see some side effects from the medication. His swelling comes and goes, but it’s never gotten as bad as it was when HaBin was diagnosed. We are still learning a lot about nephrotic syndrome and can’t wait until he achieves remission. We keep educating ourselves through NephCure.org and online support groups and are participating in our first NephCure Walk in a couple of weeks. We’re HaBin’s biggest fans and will continue to fight for a cure along with him.
My name is Beth. I am the mother to Hannah, our only child, and the light of our lives. Everyone who meets her comes to love her. Hannah’s friendly demeanor and easy way about her makes her a joy to be around.
In May 2010, when Hannah was eight years old, my husband Andrew and I noticed Hannah didn’t look right. Her legs looked heavy and she constantly had a tired, puffy look to her eyes. A few days after Memorial Day, I noticed I could not find Hannah’s ankle bones or knee caps because the swelling was so bad in her legs. I took her to the pediatrician that afternoon and was told Hannah was suffering from Nephrotic Syndrome, a disease in which the kidneys are damaged, causing them to leak large amounts of protein from the blood into the urine.
We were referred to a specialist in pediatric nephrology in Albany. Hannah began a high dose of steroids in the beginning of June. We were told that this medicine would take care of the Nephrotic Syndrome, and Hannah would be fine.
Unfortunately, that did not happen. After six weeks on the steroids, Hannah’s protein never came down. Her specialist ordered a biopsy of Hannah’s kidney. The results showed our biggest fear. Hannah was not suffering from a disease called Focal Segmental Glomerulosclerosis (FSGS).
FSGS is a disease that attacks the kidney’s filtering system (glomeruli) causing serious scarring. Very few treatments are available for patients with FSGS. Most commonly patients are treated with steroid regimens, most of which have very harsh side effects. Some patients have shown to respond positively to immunosuppressive drugs as well as blood pressure drugs which have shown to lower the level of protein in the urine. To date, there is no cure and there are no FDA approved drugs to treat FSGS.
Some of the people you may know who have or continue to suffer from FSGS include, future NBA Hall-of-Famer Alonzo Mourning (transplant recipient), member of the 1986 World Champion New York Mets, Ed Hearn (3 transplants and continues to suffer from FSGS), and James Madison University All-American guard Dawn Evans (diagnosed in 2009). All three are Ambassadors for The NephCure Foundation, the only organization that is dedicated to finding the cause, cure and effective treatments for FSGS and Nephrotic Syndrome.
Hannah is on many drugs, but has shown no signs of improvement to date. As the kidneys begin to scar, over time they lose their function and begin to shutdown. Hannah is facing dialysis and eventual transplant if this disease continues this course. We took her to Boston this past August to a specialist at the Children’s hospital. There, our worst fears were confirmed. Hannah most likely will reach end stage renal failure in five years.
My husband and I want to find more answers to help Hannah’s condition. We have wanted to take her for third and fourth opinions and want to be able to get her the treatment she deserves. The NephCure Foundation can help.
I thank all of you for taking time to read Hannah’s story.
About three years ago, I started feeling extremely tired after work. I went from going to the gym and a soccer games on evenings to doing nothing because I was too tired. A few months later, I started gaining weight and experiencing swelling in my legs, back and ankles. The amount of swelling varied all over my body. I went to the emergency room and I was told that I should just rest and it would go away.
After a month, there were no signs of improvement and I ended up in the emergency room again with pneumonia. My doctor decided to do some blood work that showed my albumin was only 11. I was referred to a clinic for further investigation.
I was initially diagnosed with Nephrotic Syndrome but my kidney function seemed to be decent. I was started on a medium dosage of prednisone (30 mg). My proteinuria was about eight and I was under the impression the medication would work and I will be fine in a few weeks.
Unfortunately, the prednisone did nothing and the swelling continued.
Eventually, I was sent for a biopsy which revealed Collapsing FSGS. I was referred to a different clinic and, within weeks, my proteinuria climbed to 25 and my creatinine was constantly increasing. I began a life-changing schedule. I had three plasmapheresis treatments each week. I was taking 60 mg of prednisone, 300 mg of cyclosporine, 360 mg of Myfortic, blood pressure medications, Lasix, galactose and vitamins.
After nearly a year on this regime, my creatinine has stabilized at 160 with a glomerular filtration rate of 55. My proteinuria is down to three. I have dedicated my life to trying to get better and my numbers have improved. I fight a daily battle but I keep fighting and remain positive.
About six months ago I slowly started living my life again. I started going out to parties, going on vacations and playing sports. I have a new outlook on life. I have been meeting so many people who struggle with illnesses. Everyone is different and what works for you may not work for me. I continue to fight and to improve slowly. God bless everyone that has helped me along my journey.
My name is Ian Schobel. I was diagnosed with Nephrotic Syndrome in March of 2002, two weeks before my seventh birthday. I know how lucky I am to be able to tell my story without the presence of Nephrotic Syndrome in my body.
My pediatrician was able to recognize the symptoms early, which gave me a fighting chance against a disease that is often misdiagnosed. I took a lot of medicine, including heavy doses of IV prednisone, which was scary and confusing at first, but I eventually grew accustomed to the weekly routine. The care and support provided by my family and my nephrologist made the eight years I dealt with Nephrotic Syndrome somewhat bearable.
I have also been fortunate to be involved with NephCure’s efforts to raise money and awareness and to meet other families coping with Nephrotic Syndrome and FSGS. From 2003 to 2005, I participated in the Rally for NephCure, a local tennis fundraising tournament. In 2003, I testified in Washington, D.C., before the U.S. House of Representatives Appropriations Committee with Ed Hearn, a NephCure Ambassador and member of the 1986 World Champion NY Mets.
Our son, Jackson was diagnosed with FSGS last week – January 2013 – following a kidney biopsy. He received this terrible news two weeks before his sixth birthday. We discovered this when we asked the pediatrician if he should be getting sick as often as he was – pneumonia, followed by two ear infections, a number of colds, strep etc. We also noticed he was tired a lot, did not have much of an appetite and generally did not feel “right” most of the time. The pediatrician said it would be a good idea to check his blood to see if we saw anything. The blood results came back with several red flags. They found low albumin and total protein in the blood and an elevated sed rate as well as low immunoglobulin. We followed up the blood work with urinalysis and discovered that he has Nephrotic Syndrome – spilling huge amounts of protein into his urine.
Our next step was to see the pediatric nephrologist the day after Christmas, who put Jackson on high-dose prednisone. We tested his urine daily for protein hoping that the steroids would work. When that did not stop his protein from spilling into his urine, the doctor suggested performing a kidney biopsy. It was following the biopsy that we learned that he has FSGS.
We know that we have a rough road ahead and are hoping desperately that a cure can be discovered very soon. Jackson is the light of our lives, is loved by many, and has always been one of the sweetest boys I have ever known.
In 2014 about a month before Jacobs 2nd birthday Jacob began to swell around his eyes, legs & 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, 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 I was not digesting what he was actually saying. My mind began to wonder…This couldn’t be. He’s so little, how did this happen, how could I have prevented it, and what can I do to take this away, what do you mean there’s no cure?! I glanced over and saw my boy just a smiling with not a care in the world and I realized ok this is our “new normal” and let’s 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 15MG twice daily once at home because 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 & 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 & 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 & inflammation decreasing herbs, love & prayers from family & 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.
My name is Jackie and I am 15 years old. After a biopsy I was diagnosed with minimal change nephrotic syndrome. I will not let this define me. This will not affect my dreams of becoming a pediatrician. I’m really lucky to have a great family (two awesome sisters and really annoying but awesome parents.). Never stop believing in the power of you.
During the later part of 2014, my daughter began to experience extreme puffiness around the eyes. We went to the pediatrician who found traces of protein and blood in her urine. The doctor thought she was just wiping too hard, gave us Singular, and sent us on our way. I followed the doctor’s treatment plan but in January 2015, the swelling in her face became much worse. Our pediatrician referred Jaidyn to an allergy specialist who kept a close eye on her but the puffiness never subsided. In May 2015, allergy specialist recommended removing her adenoid due to sleep apnea.
A month later, the surgery had gone great, and Jaidyn no longer had interrupted sleep or difficulty breathing at night. A few weeks after the surgery, Jaidyn had a stomach bug, so I took her back to the doctor. The same results came back with blood and protein in her urine. One of our doctor’s colleagues told me we need to get blood and lab work done immediately.
That next morning, the doctor called me to tell me that Jaidyn has nephrotic syndrome. I had so many thoughts rushing through my mind. How did she get this? Did I do something wrong during prenatal care? Did I do something wrong when she was a baby? Is it hereditary? It was very overwhelming but my doctor referred us to a nephrologist in our hometown who started her on a steroid treatment plan. In the summer of 2015 she was doing well and went into remission.
The trouble started when school began. With all those new germs, Jaidyn caught a cold and relapsed. After 5 or 6 more times of this happening, she became less and less responsive to steroid treatments. This kept going on until the summer of 2017. At that point, I made an appointment with a pediatric nephrologist who was 1.5 hours away from my house. The drive didn’t matter since I needed answers.
A week before the appointment, Jaidyn began to experience a very bad swelling episode. Her face, limbs, belly, and privates were completely filled with fluid. Her belly pain was severe and she had trouble walking. The new doctor prescribed her 60 mg of steroids and Lasix. The best part of the visit was that our new doctor began to talk to me about next steps and a solution to the problems.
On September 20th, Jaidyn started her steroids and Lasix. She dropped 18 pounds fluid. She was so tiny and full of energy; everything was going great. However, on October 18th, Jaidyn’s school called to say that she has severe abdominal pains. Her heart rate was so high that the nurse called EMS so that Jaidyn can be rushed to the hospital.
When we got to the ER, her heart rate was 149, and they immediately sent her to the Pediatric Intensive Care Unit. The fluid from her belly began to push into her lungs. Because her lungs couldn’t expand, she had an elevated heart rate. Jaidyn also had peritonitis and had been put on BIPAP.
It had been a long three weeks that were very tiring and draining for the both of us. She was biopsied on October 30th and the results came back two days later as Minimal Change Disease. The best feeling in the world was seeing my daughter dressed up and participating in Halloween festivities like a normal kid even through all the IVs and hospital gowns. Jaidyn even got to meet another girl with nephrotic syndrome as well.
It’s been three weeks later and Jaidyn was readmitted for unstable blood pressure. It’s been a hard journey but I know Jaidyn is a fighter and one of the strongest girls I know.
At first we started to notice that at certain times he would get puffy around his eyes. We went to the pediatrician a few times and were told the puffiness was due to allergies. Finally, over the course of several months and multiple misdiagnoses, Jalen was diagnosed with MCD.
Jalen has had several relapses throughout the years and has been on Prednisone for most of his life. He was treated with Cytoxan, but it did not work for him. Cyclosporine, a miracle drug (or at least we thought it was), kept him in remission for almost two years; however, a routine biopsy showed it was causing damage to his kidney. He then switched over to Cellcept, a treatment that keeps him in remission, but the slightest cold or illness causes him to relapse. During his last relapse, Jalen developed an allergic reaction to albumin, a blood protein. Since then, treating his relapses has now become a little more complicated.
We struggle to accept our challenges in dealing with his illness such as the hospitalizations, appointments, biopsies, lab works, medications, constant tears, fears and uncertainties of the unknown future. However, we continue to hope and remain positive that he will outgrow his disease. We also pray that there will be a cure in the near future.
We are sharing our story to let you know you are not alone. Although the pain is great to bear, stay hopeful. I have learned to accept his disease and have vowed to never treat him differently or allow him to pity himself. Our positive attitude as parents will reflect in our children.
My son, Jarrett, now 13 years old, was diagnosed with Nephrotic Syndrome at 22 months. He started on steroids right away and we had great results. He responded well and didn’t have a relapse for about 8 months.
It has been a long battle with protein in his urine. He is now steroid dependent and we have tried many other medications. Currently he is on steroids, Cellcept, Sandimmune and Lisinopril.
Nothing seems to be helping and he is experiencing side effects from the medications. At one point he had fluid on the brain and high potassium which resulted in a trip the emergency room. Jarrett needed medication so he wouldn’t have a heart attack. Other smaller side effects have included mood swings and bruising.
He has had three spinal taps (to remove the excess brain fluid), three kidney biopsies and his appendix and tonsils have been removed. I can’t remember how many times he has been hospitalized. He seems to pick up every virus and tends to be sick often.
One day when I picked up Jayden from the babysitter’s house, she mentioned that his belly was very swollen and he seemed really tired. I thought he must have eaten too much, or maybe he was allergic to some foods, so I called his pediatrician the next day. They told us to bring him in right away with a urine sample.
When we arrived at the pediatrician’s office the next day, they tested his urine and came back into the room a little concerned. About five different doctors at the practice came in to look at him. I was panicking because I did not know what was going on.
After checking his legs and finding that they were also swollen, they advised me to take him to INOVA Fairfax Children’s Hospital right away!
Once there, after numerous tests, he was diagnosed with Nephrotic Syndrome. My husband and I were shocked since we had never heard of this before.
We spent a few days in the hospital, and then he was released and given prednisone to take at home. We took his urine daily and it still wasn’t improving. Three days after being home, we had to rush Jayden back to the emergency room because he had a fever and terrible stomach pains.
The doctors diagnosed him with a bacterial infection called peritonitis. He stayed at the hospital for four more days and received antibiotics through an IV. He had a PICC line inserted the day we took him home so that we could continue to treat him for 10 days and he could be home for Christmas.
After about two weeks on prednisone, his urine tested negative. What a relief that was! However, we know it can come back and we are keeping a close eye on him daily and checking his urine.
The nephrologist says his Nephrotic Syndrome was caused by Minimal Change Disease. He is still on 1,500 milligrams of sodium a day until we are done with his prednisone, which should be in a few more weeks.
I pray we can find a cure and raise awareness of this terrible disease!
Jerry first became sick at the age of 12. I noticed his eyes were swollen and he felt really under the weather. It was hard for him to take in fluids and I thought he had the flu. I took him to his doctor and he requested a urine sample just to be on the safe side.
When Jerry could finally urinate, I immediately took it to his doctor and we got a call that same day saying that he was sending us to a kidney specialist in Spokane, WA.
At the time, we lived in Davenport, WA, which is about 60 miles away. When we arrived I was really scared, not for myself, but for my child. The kidney doctor told us that Jerry had Minimal Change Disease and he would outgrow it, but he didn’t.
Before long, after countless medication changes and practically living at the hospital, we were sent to Seattle Children’s Hospital. Once there, after a number of biopsies, Jerry was diagnosed with FSGS.
In December 2004, Jerry had a grand mal seizure and had to be airlifted to the hospital where he was in a medically induced coma for two months. He had to learn to walk and to feed himself again. He also had epilepsy because the fluid retention went to his brain.
From the countless hospital stays, Albumin transfusions, and our faith in God, my son is now 22 years old, in remission and attending college. He is the light of my life. I am so glad there is a website where we can be better informed about this. If you ever decide to hold a NephWalk in Spokane, WA, you will definitely have a huge group of walkers.
You can say this is our story of what would become the start to a long battle with Nephrotic Syndrome (NS) for Jodie. The journey started two months prior to finding out what was really going on. Her face became swollen and I rushed her into the Emergency Room, thinking she had been bitten or had a bad reaction to a new food we tried that day. The whole time in that hospital visit, no tests were performed. Jodie was set home with the doctor’s suggestion of Benadryl for what, he said, was seasonal allergies. I went home relieved.
I thought I’d give the medicine a chance to work so I waited another two weeks before returning to the ER for the swelling. I had even taken her to a different hospital this time, under suspicion that the previous doctor was in a hurry. Once again, she was sent home with Benadryl and no tests performed.
Another two weeks had passed when on September, 25th, 2009, before our little princess Jodie turned the age of two, I took her to back to the ER for significant swelling. I just knew something was not right. I refused to leave the hospital until my daughter was given the tests she needed, under the threat of a lawsuit. I was even nearly escorted out of the hospital. Not even 30 minutes after they collected urine, she was admitted for spilling large amounts of protein and large traces of blood into her urine after which we stayed in the hospital for two weeks. As her mother, I was scared and furious that this could have been detected sooner. To this day, my family has never received an apology. I have let it go because she is so healthy now.
After her diagnosis and two week stay, Jodie would then start to see a nephrologist in Lubbock, Texas for a year before we were to move. The first year was the hardest. Every doctor who met Jodie would bring other doctors and students to meet the rare child and study her rare case. From then on, our steroid dependent, young lady was in and out of hospitals reaching from Texas to Washington state. Fortunately, at Seattle’s Children’s Hospital, she met the most intelligent group of doctors, who led our little girl to her remission. In the 5 years Jodie has had this diagnosis, she has had high blood pressure, high cholesterol, low sodium, high sodium, edema and skin infections due to long periods of edema. Jodie has also had to take Lasix (Furosemide), Albumin, Rocephin, a blood transfusion, two biopsies, chemotherapy (pill form), Cellcept, steroids and three pick lines. During all of this, we learned of her allergy to Clindamycin and it wasn’t until early January 2012, while her father was deployed to Afghanistan for 9 months, we found a medicine that would have her to this day in remission. Rituximab was the drug that would give her a life filled with happiness and not hospital stays.
Jodie is currently drug free, aside from her inhaler for asthma. Jodie is an active, loving, outspoken, courageous, sassy and talented child. She has never once allowed her disease or her surroundings to affect her thoughts and the ways she wanted to live her young life. There have been moments where she would witness me mope and this courageous little girl would reassure me that God was going to make it all better so she could play outside and be a healthy child. Jodie has a way about her and has always been wise beyond her years. She is a healthy six, soon to be seven, year old who is going to first grade and currently in remission.
Thank you for taking the time to hear about my daughter Jodie. Sincerely, Amanda (mother to Jodie).
At 20 months old, Jordan woke up from a nap with swollen eyes. He was originally diagnosed with an eye infection. Antibiotics did not work so his urine was tested for protein. Through that test, Jordan was diagnosed with Nephrotic Syndrome. He was started on prednisone and Lasix. After two months, he had not yet responded to the medications. His doctors performed a kidney biopsy that lead them to diagnose Jordan with Minimal Change Disease.
After 4 months on prednisone, he was admitted to the hospital for pleural effusion and was started on IV Cytoxan. In time he was been treated with a combination of Prograf, Myfortic, Prednisone, Lasix, Lisinopril and 2 rounds of Rituximab, the most recent being this past summer 2013. He seems to be responding to the medication. He has had three kidney biopsies so far.
Presently, Jordan is taking Prograf, Myfortic and Lisinopril for his disease plus Singulair, Xyrtec, Pepcid, magnesium oxide and calcium. He is 15 years old, almost 5’ 6″, and is a sophomore in high school. He lives a normal teenage life except he is dependent upon his medications to keep him in remission. He gets blood work done every 3 months prior to seeing his nephrologist. He is growing and flourishing despite all the medications he had taken.
Told by Jordan’s mother
My daughter Kacey got pneumonia when she was 6 months old. She stayed in the hospital for 3 days before being sent home. Seven months later she got pneumonia again. I thought it was odd that she got pneumonia twice in one year. Two days after leaving the hospital she started gaining a lot of weight – I knew something was wrong.
I took her to the emergency room and told them she had gained 4 pounds in two days. They tested her blood and said that the results were a cause for concern. We were referred to Shands Children Hospital in Gainesville, Florida, where she was diagnosed with Nephrotic Syndrome.
We stayed at Shands for a week and went home. Unfortunately, we returned a week later. The medication she was prescribed was not working and she was still gaining weight. Her doctors added two additional medications – an additional diuretic and another for high blood pressure.
After returning home, she stopped eating and started regurgitating her medications. I took her back to Shands to see her nephrologist. While examining Kacey, the Patient Care Assistant and the nurse discovered that her oxygen level was 45%. They rushed her to the pediatric intensive care unit. She was diagnosed with a bacterial blood infection. By that time she was already on a respirator. A kidney biopsy revealed that she Minimal Change Disease. That began a long, hard road that required us to stay at Shands for two months.
We were relieved when we returned home. We thought everything was going to return to normal. Then one day Kacey turned blue so I rushed her to our local ER. They air-lifted her to Shands but they could not explain the episode. We stayed a week and went home.
A couple of months went by and another issue occurred: She started acting oddly. I rushed her to our local ER. Again, they rushed her to Shands. This time, they discovered a blood condition called peritonitis.
Kacey’s nephrologist said that we had to remove her kidneys because she would not be able to fight another infection. We had to make the difficult decision to move forward with the operation – the worst day ever.
As I write this story, we are in a recovery room at the hospital – two weeks after the operation. We have started dialysis and it is going well. We are hoping for a transplant in the near future.
We donated her kidneys for testing and learned that she has had FSGS the entire time – not minimal change disease.
When you think you can’t go on you can just ask God He will answer. It may not be the answer you were hoping for but it will be the right one.
Kacey is now 23 months old.
On February 20, 2008, my three-year-old daughter, Kayleigh, woke up with swelling around her eyes. Thinking it was an allergic reaction to something, I took her in to see her doctor. He could not find any problems, but gave us antibiotics, assuming the swelling was from some sort of infection.
Two days later, her stomach had become so distended that her clothing no longer fit. I took her into the local hospital emergency room to find out what was going on. The urine tests showed high levels of protein and the attending physician made a call to the Cincinnati Children’s Hospital, to work with them in finding an answer for my daughter’s issue.
An ambulance was sent to pick us up and take us downtown. Once we arrived, Kayleigh was diagnosed within the hour with Childhood Nephrotic Syndrome. We were informed since she was bad, we needed to return Monday morning to the Nephrology Department. Normally, that department isn’t open on Mondays, but they would open for us.
We had the most wonderful doctors treat her through this hospital! I felt they were the strength I needed to get through this and be strong for my daughter. They started her on 8 weeks of high dose steroids, which she responded to immediately.
We began the process of weaning her off of them and with each change in dosage, I had a horrible feeling of dread, fearing she would relapse before making improvement. After a few weeks of weaning Kayleigh off of
the steroids, her doctor ended those treatments. He scheduled Kayleigh for a follow up in 4 weeks. That day, I left the office very scared that this was not “it.” I knew we’d be back, and my heart broke.
I had seen my beautiful little girl change so much. One day she looked in the mirror and said to me, “Mommy, look at my face, what happened to it?” She had gotten bigger due to the steroids. Through it all, I continued telling myself that there are many parents who have lost children, who would love to be in my place. So, I needed to be thankful that if my child has to be sick, it is something we can treat.
After the first 4 weeks off the steroids, our doctor waited for our call and anticipated an e-mail from me. At the appointment, the doctor said she was officially in remission. Kayleigh’s Childhood Nephrotic Syndrome never came back.
The doctor instructed us to return for check-ups every 4 months. Kayleigh officially went into remission on June 22, 2008. She has not had any relapses and we are hopeful that she will continue to remain healthy.
We decided to start the family tradition of chopping down a Christmas tree and had just finished decorating it. We suspected her swelling was related to her asthma or an allergy to the tree. Benadryl did not reduce the swelling. I remember her pediatrician saying “let’s get a urine sample to run a test. It’s a long shot but there is one thing I’d like to rule out.” It was New Year’s Eve when we got the call. She was diagnosed with Nephrotic Syndrome and was immediately placed on Prednisolone.
Her swelling continued well into the New Year. Her baby brother was born nine days into the New Year and her pudgy face fills all of our family photos. We met with the pediatric nephrologist days after our son was born. I took her and our newborn out on the coldest day of the year so we did not miss such an important appointment. I’ll never forget that day.
Kate spent 2 years on daily doses of steroids. She caught a pneumococcal strep infection when she was two-and-a-half years old that landed her in the hospital for five days. She relapsed any time we tried to cut back on the steroids. Over time, we learned she had steroid-dependent minimal change disease. We worried more with each time she relapsed.
We trusted our doctor but felt a second opinion was not unreasonable. We traveled to Boston Children’s where it was recommended that she try Tacrolimus and eliminate the steroids. It was successful! She was three years old at the time. Her relapses have decreased over time, moving from six per year to four per year and finally to remission, where she has been for a year.
Kate is now nine years old. She takes Tacrolimus and Amoxicillin to boost her immunity, two asthma medications, and multiple daily vitamins. She is as normal as the next child and proud to tell people she has Nephrotic Syndrome. We hope to cut back her Tacrolimus this summer and a greater hope getting her off it all together within the next year.
This has been a journey that we never expected but has taught us so much. We research options, monitor her as she grows, and pray for her future. She has come so far and has become an empathetic person from her experiences. She tells people “I have kidneys and they are sick.” We love her more than words can express.
In February 2014, Kellen woke up in pain and experienced pain while urinating. That was the first day of our new life. The ER Doctor said it was a bladder infection and gave us antibiotics. After 2 weeks, Kellen still had high levels of blood and protein in his urine. He was diagnosed with Nephrotic Syndrome.
Kellen was put on high doses of Prednisolone which he and had to take twice a day for eight weeks. His levels of blood and protein did not change. Our pediatric nephrologist suggested we take it to the next step by performing a kidney biopsy. The results came back: Kellen has FSGS. I was so scared and I had no idea what FSGS was. I knew that my little boy was sick and that I couldn’t make him better.
We live life one day at a time. We don’t know what life is going to give us. Without a real treatment, we just don’t know what our future holds. We need to raise awareness about Nephrotic Syndrome, FSGS, and Minimal Chance Disease. We need to find a cure.
Kelly was diagnosed with Nephrotic Syndrome April 16th 2015. It has been a difficult journey but Kelly has always stayed strong and positive through it all. He is a
big hearted young man that would do anything to make you smile.
I want to take this opportunity to tell you a little bit my wonderful daughter, Kennedy, and her journey. Kennedy has always been an active child and one would never know that there is anything wrong with her.
At the age of 2 we started to potty train Kennedy and she kept on having UTI’s and would have one at least a month for a couple of months. Her normal pediatrician, Dr. Weinstein, had come to find out that she had high protein in her urine as well. He was alarmed at the levels and put in for a referral for a visit to the nephrologist. Dr. Weinstein knew of her family history with kidney issues and was very proactive to make sure we found out what was going on.
Once we received our referral to the nephrologist, we went to Loma Linda. We met with Dr. Sahney and slowly began to eliminate possible issues that it could be. While working with Dr. Sahney we found out that Kennedy was having renal reflux and that was what was causing her chronic UTI’s. Unfortunately it was not the cause of the high protein.
In May of 2014 Kennedy had a biopsy done on the opposite side of the renal reflux to see if there was a disease in her kidneys. Weeks went by and the specimen kept on going through a chain to see exactly what was wrong. I think I actually got a letter from the University of Oregon asking for permission to keep her specimen before I even had the results. When we went back to Dr. Sahney’s office to get the results I was nervous. I had done so much research in regards to different kidney diseases and treatments my mind was overcome with possibilities. It’s sad when you are in the doctor’s office hoping for one disease because you are afraid of another. Dr. Sahney informed us that Kennedy had Focal Segmental Glomerulosclerosis (FSGS) and C1Q. FSGS is a potentially debilitating kidney disease that has no cure.
What has made Kennedy’s diagnosis hardest is the fact that she has had no signs of the disease other than high protein. She was never swollen or irregularly high blood pressure. Little Miss K has tried multiple different treatments but unfortunately the side effects have out weighted the benefits.
Story told by Leslie Lippincott, Kennedy’s mom.
The ups, downs, and SCARES of having a kid with NS! My 6 year old was diagnosed in April of 2016 with nephrotic syndrome. It was a life changing day for us! We had definitely never heard of NS before the diagnosis. We went from having a healthy child with only had some allergies to a child with a rare kidney disorder neither me nor my husband had ever heard of! We were afraid to take her home from the hospital!
At first it was okay because she stayed in the hospital for about 3 weeks. However when we did get home it was a total shock! What do we feed her, what about school, what about our jobs, what will happen in the future, will her kidneys fail, how do I prevent this? We were in whirlwind until we found NephCure and other resources. The most important thing is that we take things one day at a time! We have had relapses, ups, and downs, but we live each day to the fullest!
Kylie is currently a 6 year old kindergartner in an advance reading class, takes tap, ballet, and jazz dance classes, and is on a competition dance team. She loves taking her dance lessons 3 times a week. Her first year petite team has won a number of awards and they are a wonderful support system for her. No matter what comes we will continue to take things one day at a time and let her be as normal as possible:-) That smile is PRICELESS!
Landon just celebrated his 2nd birthday when he became swollen. We took him to the doctor right away and within 24 hours he was diagnosed with NS. He went through 5 relapses in a year and is considered prednisone dependent. We are doing a very slow taper right now and if he stays in remission we will not have to visit a second line medication. He is a very active 3 year old and loves playing with his big brothers.
He had been telling me about a reptile show at daycare and I figured he touched something and then touched his eyes. When we went to the urgent care center, the nurse practitioner said it did look like some kind of a reaction and put him on a five-day course of prednisone and Zyrtec. We did, and everything went away.
However, three weeks later, the puffy eyes showed up again. I decided it must be my new detergent and that I should re-wash everything. I took him to his pediatrician’s office; I was sure that he would agree.
Instead, he took one look at Leo’s eyes and said, “I don’t think this is an allergic reaction. I want to give him a urine test.” The results were 4+ which I didn’t understand at all.
He told me, “This looks like a form of kidney disease. I want you to bring him back tomorrow for another urine test, and if it is the same, I am going to refer you to a pediatric nephrologist.” I thought I was going to fall over. I felt like all of the air had been sucked out of the room. I started imagining my Leo, hooked up to a dialysis machine, needing a transplant, etc.
Scenes from Steel Magnolias were going through my mind. Our doctor told me, “If you are going to Google something, Google Nephrotic Syndrome.”
Leo was diagnosed with Minimal Change Disease and Nephrotic Syndrome. That was two-and-a-half years ago. He went into a remission for six months. He even managed to get off prednisone for two weeks before his first relapse. After that, he started relapsing every few months, never getting off the prednisone entirely again. Right now, he’s been doing a very slow taper and has been enjoying his longest remission yet – almost seven months.
The side effects are always with him, but he’s learned to deal with them. The puffy cheeks were upsetting to him at first but after everyone told him how gorgeous they are, he started to like them! Still, when he balloons up during the first heavy doses of prednisone, he isn’t happy about it.
The effects on his mood were horrid for the first year. As he has grown, we have noticed he has less rages. For each cycle, he has two really hard months of battling the side effects of the prednisone. After that, he has an easier time until the next relapse.
We hope and pray for the best every day. We have learned a lot and have made a lot of friends through Facebook NS groups. We know that he is one of the lucky ones, so far.
The little sweeties with FSGS have such a bigger battle, and we pray that we don’t end up with that diagnosis someday. We try to take one day at a time.
When we returned home from a cruise to the Virgin Islands, we noticed a difference in our little boy. He began waking up with swollen eyes and would become extremely thirsty and tired. I would take him to the on call pediatrician but we were never seeing the same doctor. They kept saying it was allergies. At one point I thought he may have come in contact with something from one of the islands. We worked with my daycare provider to try to find the allergen and we couldn’t come up with any food, elements or patterns of why this was happening. At one point his abdomen became swollen and we knew something wasn’t right. A couple of his loving and caring teachers mentioned Nephrotic Syndrome to me and I called his pediatrician right away. We made it a point to see our pediatrician. He then took some tests and trying to get a urine sample from a child in diapers is near impossible but we did it. It had turned out he had protein in his urine and we had to get to Children’s Hospital immediately. In March 2014, when our son Leo was almost two years old, he was diagnosed with Minimal Change Disease (MCD) – Nephrotic Syndrome. The overwhelming feeling of finding out that your child has a rare disease that you cannot do anything about or do not even know much about is one of the scariest and heartbreaking moments in a parent’s life. The fact that this disease is so unpredictable is what scares us the most.
In the first year of his diagnosis it was extremely difficult to watch a toddler being on this medication that would make him sad, angry, emotional, hungry and thirsty. We had no choice to keep in on this medication since it was the only thing that triggered his kidneys to work again after relapsing. Testing Leo’s urine was a struggle for us when he was two years old. He would scream “no bags” since the tape on the urine bags would hurt his legs. We figured out a great solution to this bump in the road. We would place cotton balls into his diaper at night and we would squeeze them out in the morning to test his urine. Since the age of 3, Leo’s routine is he wakes up and he urinates in his cup to see how his kidneys are “feeling” and he never complains.
Leo responds to prednisolone which he has recently been off of for 6 months since his diagnoses and is currently in remission. He is on a course of mycophenolate (Cellcept) which seems to be working but he has to have frequent blood tests. When Leo relapses he becomes very tired, moody and lethargic but as he as stated it will not stop him from playing flag football, soccer and baseball when he gets into Kindergarten next year! As a family we always try to stay positive, even on the bad days. We are so proud of his positive attitude and strength. Watching your child struggle with this rare disease is a definitely hard but with NephCure’s support we feel like we are doing something about it. Leo is a strong, smart and funny 5 year old who smiles brightens up the whole room. We couldn’t be more proud of the little boy who is growing up too fast!
Diagnosis: FSGS at 3 years old
Favorite low sodium snack: bananas
Hobbies: dance, soccer, guitar, baking
Fun Facts: I’m crazy!
Lexi is the youngest and has two older sisters. When she turned one, she started having belly issues. The doctors said it was from juice, even after we eliminated juice from her diet.
Her eyes started getting puffy and they said it was allergies. When she was 3 she ended up in the emergency room with severe abdominal pain. She was transferred to Children’s and it took a week to rule out GI problems and she was diagnosed with Nephrotic Syndrome.
A month and a half after that she had a kidney biopsy, which confirmed FSGS. She was pretty stable until last summer when she quickly progressed into stage five renal failure. Lexi had a kidney transplant in September 2014 and FSGS came back one month later. She received weekly plasmapheresis treatments to keep her disease under control, which seems to be managing it well for now!
Advice to others: Lexi is an inspiration to us every day. She does not let this disease hold her back in any way. Distractions help her get through tough days at the hospital. She always has something exciting to look forward to whether it is dance class or her upcoming Make a Wish trip. We help her focus on stuff like that to keep her mind off things that are scary or painful at the hospital.
Life Motto: Wake me up before you go, go!
He was really swollen all over his body. He gained about 20 pounds of fluid almost over night. I was really scared so I took him to the ER. The doctor there hadn’t a clue what was wrong. They gave him pain meds and sent him home. They instructed me to take him to his pediatrician in the morning. His pediatrician diagnosed him, but did little to help him. They sent me to a nephrologist, which was nearly impossible to get into for months.
I was desperate, so I took him to the Children’s Hospital ER this time (where the specialist was located) and had him admitted. They treated him with prednisone and ranitidine daily at 60 mgs.
Seven months later Logan doubled over at the local pool. He had to be rushed to the Children’s Hospital by ambulance where he was admitted to the ICU. He stayed there two weeks and was treated for renal failure and sepsis in his third space. He almost died.
They wanted to go on dialysis but I held out and asked for a 2nd opinion. With giving him aggressive doses of methoprednisone, and antibiotics, he got better. They released him on 60 mgs prednisone again.
Two days later Logan woke up in severe pain and unable to make his hands and arms move. I again rushed him to the ER where they diagnosed him with calcium paralysis (due to the renal failure and meds) and again, rushed him via ambulance to yet a different hospital where he was admitted for another two weeks in their ICU.
After a month total in the ICU and finally finding a nephrologist who has over 20 years experience treating this disease, he is home and seems to be in remission, although he is on an every other day dose of 30 mgs prednisone.
Told by Logan’s mom, Hayley.
Mac was originally diagnosed with Childhood Nephrotic Syndrome after his five-year-old well-child checkup. Our pediatrician noticed that Mac had elevated blood pressure and checked his urine, which was positive for protein (3+). Because he seemed so healthy, it was hard to believe that our spunky little boy was really sick. We were completely shocked and devastated by the news. Being a physician, Mac’s dad knew enough about this disease to know that it would be life changing for all of us. How could Mac look so normal and healthy and be so sick? This is a question we continue to ask.
After a referral to a pediatric nephrologist, we were relieved to hear that Mac most likely had Minimal Change Disease and should respond to steroid treatment. He was started on steroids and other medications to control the symptoms of the disease. In Mac’s words, his kidneys were “silly” and he was a trooper through all of the tests and appointments. To our dismay, the steroids did not induce a remission, but he was greatly affected by the side-effects of the prednisone. This was the first time that he had ever appeared to be unhealthy. He was extremely swollen and his blood pressure was even further elevated, despite significantly restricting his salt intake and taking an anti-hypertensive (not to mention the personality changes, hyperactivity, mood swings, etc). It was around this time that we realized that Mac’s cholesterol was alarmingly high, so a statin was added to his daily meds.
After failing to respond to several months of steroid treatment, our nephrologist recommended a kidney biopsy to get more information. Again, we were encouraged because his kidney tissue appeared normal (no evidence of FSGS) and the Minimal Change Disease diagnosis still seemed most likely, although our nephrologist always reminded us that FSGS was still a possibility. With this news, we were still holding out hope for a remission and moved to another course of treatment: cyclosporine.
Again, while experiencing multiple unpleasant side effects (mood swings, fatigue, significant facial/body hair growth), Mac’s kidneys did not stop spilling protein and his albumin (level of protein in his blood) remained significantly low. It was at this time that we decided to have some genetic testing and move to a different medication. The testing would tell us if Mac has one of the known genetic mutations that is linked with Nephrotic Syndrome (and will be highly unlikely to respond to treatment. While waiting on the results from the University of Michigan, Mac started taking Prograf (tacrilomus). Six months later, Mac still failed to show any response to treatment, but seemed to be tolerating the Prograf relatively well (other than some problems with sleep).
The results from the genetic testing came back and we were thrilled to hear that Mac did not have any of the know genetic mutations. This restored hope for a response to treatment and relieved some of the fear that our other child could also be predisposed to Nephrotic Syndrome. Before deciding on our next step, our nephrologist recommended a second biopsy because he was suspicious that our original biopsy may have missed FSGS. As we feared, this biopsy did find the scarred tissue that confirmed a diagnosis of FSGS. Additional scarring caused by medication was also found. With this new information, we investigated the available studies that were examining the efficacy of Galactose, which is actually a naturally occurring sugar. We were hopeful that Galactose would be a great match for Mac, as he was found to be positive for the FSGS permeability factor, which Galactose is suspected of binding to, preventing the factor from doing its dirty work. Additionally, Galactose was a good next step for us because it is naturally occurring and should not cause additional scarring to the kidneys. Unfortunately, after several months of treatment, Galactose did not work for Mac.
Discouraged, but not defeated, we made the decision, upon recommendation from our nephrologist, to give Mac’s little body a break from the medications that are attempting to put the disease in remission. We decided to simply treat the side-effects of the disease (blood pressure, cholesterol, frequent vitamin imbalances, etc). It has been over a year now that we have been proceeding this way, and Mac has appeared to be healthier than ever. His body has been more effective at fighting sicknesses (common cold, flu, stomach viruses, etc) and he finally got his energy and appetite back! Although we are always looking for a new and promising treatment option for Mac, we are enjoying this period of time in which Mac feels well and can focus on just being a boy. We realize that things could change at any time.
Now, more than 6 years into our fight against NS and FSGS, we continue to be amazed by Mac’s physical and emotional strength through this process; however we are frustrated that he has neither been in remission nor responded positively to medication. Mac inspires us to keep up the fight and to continue to search for more answers. At the end of each day, we try our best to be conscious of putting it all in God’s hands, for He has taken such good care of us through our journey. We know that He loves Mac more than we can even imagine and that He will use this situation for good. For that we are thankful.
In 2008, I ran the Kiawah Island Half-Marathon with two dear friends. We did this in honor of Mac to raise awareness and funds to support kidney disease research through NephCure. We raised more than $25,000! In 2011, our family took part in putting together a Walk/Run in our hometown (Aiken, SC) for the same purpose. We were overwhelmed by the participation and support that the event received. Now, in 2013, we are at it again! We are so looking forward to the Walk/Run that is taking place in Aiken this fall (2013)!
Told by Mac’s mom, Meg.
Diagnosis: Minimal Change Disease at 2 years, 2 months
Hobbies: cheerleading and softball
Fun Facts: I have 2 older brothers that I love more than anything and a McNab dog
“What No Steroids Means To Me”
It would be a miracle. My life would be different because I wouldn’t have to take medicine in front of my friends and people wouldn’t call me mean names because of what my medicine does to me. I wouldn’t be out of breath as much and I wouldn’t have to miss school a lot. I also wouldn’t have to go into the hospital as much. I don’t remember the last time I didn’t have to take medicine. I wouldn’t have as many migraines or stomach aches from my medicine. My mom wouldn’t have to be as worried about my health. My brothers wouldn’t worry as much when I go into the hospital. Thank you for your support. If you can’t donate please say a prayer for me, or get me a magic wand”.
Makayla is a 9 year old beautiful little girl with Chronic Kidney Disease. Diagnosed at age 2, so has not really known what life is like without it. Since Makayla is a steroid dependent case, she has only gone a few months in the last 7 years without steroids. Although we are incredibly thankful she responds to steroids when relapsing, the side effects are painful and disheartening
Makayla is an extremely smart, straight-A student and a very wise and funny young girl who loves anything girly. She always takes on a leadership role in everything she does. She is compassionate and loving to everyone, loves animals and has the best laugh ever!
Updated as of Dec 2015 – Makayla has been accepted into an 18 month non steroidal clinical trial, which could potentially provide the medical treatment she needs to live her life off steroids once and for all. (Trial details can be found here).
The prognosis for Makayla’s disease is unknown at this time. We have attempted numerous medications in the 7 years she has had the disease, none of which have resulted in her being able to stop taking steroids completely. If this treatment option does not work, she will likely endure regular infusions of Rituximab. Although this has worked in the past in allowing Makayla to get off the Prednisone for 3 months at a time, the side effects are scary! Plus, her doctors are hundreds of miles from home, so it requires a lot of travel as well.
The attitude of this amazing little girl fills us with pride. She does not ever feel sorry for herself, thinks of others well more than she does herself. She used to be very private about her disease until the opportunity of this medical trial came into our lives. As soon as she realized she may help other children, she was open to telling her story. Life has been crazy lately, but the good news is she has been steroid free for 3 days now! A little Christmas miracle. Please say a prayer for the health and wellness of our Pineapple Princess 🙂 God Bless! For more information about Makayla, visit her CrowdRise Page and her Facebook Page.
Told by Makayla’s mom, Shanna.
Mason was a year and three months old when we found out he has Nephrotic Syndrome. I remember that weekend very clearly. It was the end of July and my husband and I noticed swelling in Mason’s legs and face. We had thought it was just his allergies. However, after a few days, his face continued to swell. One morning, his eyes were swollen shut. We thought that he had either been stung by a bee or bitten by ants. We decided to rush him to the hospital to find out what was going on.
When we arrived, they rushed us to a room and took samples of his blood and urine. We stayed in the emergency room for five hours. Eventually, they admitted him to the hospital in order to run more tests. I remember the doctors mentioning many possible diagnoses (including lupus) but they were not certain of anything. Later that night, we were given a complete diagnosis.
Hearing that my child has a rare kidney disease was hard to take in. It was like having an out-of-body experience. We were told that Mason would have to be on medications for a while until his levels went down. They assured us that he would grow out of his Nephrotic Syndrome.
We stayed in the hospital for five days, but we were not gone for long. We were only home for a day when Mason’s stomach started to swell and he began experiencing pain. We went back to the hospital and ended up staying for another five days.
Mason has responded well to the steroids within the last two years; however, he has relapsed three times. The first time he relapsed, he was the heaviest he has ever been. The doctors decided that prednisone and lisinopril were not enough, so they also prescribed tacrolimus. He spilled protein for another two months until he found relief. He stayed in remission for eight months, and during five of those months, he was steroid-free.
Mason has been such an amazing boy throughout this chapter of his life. He is lactose intolerant, and he has also been placed on a sodium-free diet. Our entire family has made changes to our diet so he doesn’t have to face it alone.
This disease has been so unpredictable. When you think everything is figured out, a curve is thrown into the mix! We take it day by day and hour by hour. We hope that one day a cure will be found.
Mason has relapsed a few more times, but he is currently in remission. At the moment, he is only taking tacrolimus and lisinopril. We are hoping that within the next few months, they will lower his tacrolimus dosage.
I’m so glad to have found support groups like NephCure. I am also glad that we have met others suffering from Nephrotic Syndrome. I hope that when Mason gets older, he will find comfort in knowing these networks are here for him. I also hope he never lets this disease define him.
I was diagnosed with nephrotic syndrome at the tender age of 3. My mommy pressed and pressed that something just wasn’t right. Finally I was diagnosed at a local hospital in February of 2015. We were then transferred to CHOP in Philadelphia where an amazing team of doctors took amazing care of me. A lot happened from Lasix to Albumin infusions that helped with my swelling, to being on constant steroids for a year and a half. I was then labeled steroid dependent. My mom had to make the most critical decision to take the next step in treatment. After a week of back and forth thinking and studying these extremely scary medicines, she decided to go with a chemo drug called Cyclophosphamide or Cytoxan. On March 22nd, 2016 I began taking this medicine for 10 weeks with frequent blood tests to make sure I was handling the medicine ok. In June, I finished my medicine with no major issues. Here we are a year today, one year ago today…ONE YEAR and I’m still in remission! One of the scariest days and decisions of my moms life was deciding our next step in hopefully getting me in remission, even if we could go a month, 2 months, 3 months, even 6 months, but here we are ONE YEAR! If I can make it 10 more weeks, I will have gone an entire year without medicine and hopefully continuing to do so! I have come such a long way in this scary journey with some scary illnesses, but I have surpassed it all and fought through! I have remained such a trooper and a superhero and my mommy so proud of me! My mommy’s advice to other patients/parents is to stay strong and continue to fight for your child and know you are not alone! Together we can fight this awful disease and hopefully one day find a cure!
My youngest daughter, Megan, is living with the kidney disease Focal Segmental Glomerulosclerosis (FSGS).
In 2000, we had taken Megan to the pediatrician for her 4-year-old wellness check-up when her urine tests came back with high protein levels. We were referred to a pediatric nephrologist. At the time, there wasn’t one where we live in Wichita, KS. So, we were referred to Dr. Warady from Children’s Mercy in Kansas City, who made frequent visits to Wichita.
Megan spent that first year reluctantly being poked and prodded with needles and giving urine samples. She endured test after test, to monitor her protein/creatine ratio, as well as other levels. Dr. Warady was great to Megan and was only doing what was needed to be done to diagnose her condition. He prescribed different blood pressure medications, which seemed to keep her levels pretty steady, but none really returned to the “normal” level condition.
When Megan was 5 years of age, we traveled to Children’s Mercy Hospital in downtown Kansas City. Megan had a kidney biopsy performed to see how much damage she suffered and also to get a more accurate diagnosis. We were fortunate that Megan’s biopsy came back benign, and she only had minimal damage. It was the biopsy and culmination of her various test results that led them to diagnose her with FSGS. Megan continued with her medication treatment and will forever have to take some sort of blood pressure drug combination, everyday, for the rest of her life.
I wanted to know why Megan would have to take a “blood pressure” drug? It was explained to me that it would help lower the protein levels in her body and that would in turn lower the chance for further kidney damage.
Megan is now a teenager. She loves school and loves to spend quality girl time with her friends. At the beginning of every school year, I notify the school staff of her condition and am consciously aware of how she is feeling. I want to make sure Megan is properly educated on taking care of herself as well as eating the right foods. We regularly have her protein levels tested, and through the years, we have happily watched them remain steady. Although her protein levels have never returned to normal, she has no outward symptoms!
FSGS is a silent disease. One, if not tested, could easily go undiagnosed. Luckily, Megan has great doctors, who along with her family are making sure we stay on top of her health condition.
Megan is reminded to eat right and take her medication daily. Her friends and family help her keep a positive outlook on life and remind her to enjoy every bit of every day! She’s more aware, than most teens, how fragile life really is, and how much she is cherished.
Her doctor has said Megan will more than likely need to have a kidney transplant in the future. We just don’t know exactly when. Thankfully, her tests are not producing progressive results of kidney damage. On the other hand, she may need to have another kidney biopsy next summer to get a better assessment of her current kidney damage.
We are very hopeful for the future! We want to bring awareness for this silent disease through sharing Megan’s story, and hope funding for treatments and a cure will come about to help her as well as many other families living with Kidney disease.
Very little is known about this disease and we need to do whatever is needed to bring about more research and awareness! Thank you!
Holly L. Gilpin
Mia was diagnosed with nephrotic syndrome right before her third birthday . We noticed that she was swollen around her eyes and her belly was getting very large . I just thought maybe she was dealing with some kind of allergy but that was far from what we were dealing with. She spent a week at Riley’s Children’s Hospital trying to get the for sure diagnosis: Nephrotic Syndrome. We we devastated and completely lost . Mia is now 10 and has had 18 relapses over the years. She had a very bad year in 2015 when she became steroid dependent. We tried many drugs including steroid infusions that made her gain 25 lbs of water . She was so swollen she couldn’t even walk but after a few weeks we were able to get it under control . Since then she has gone on Tacrulimus which has done wonders for her! She has been in remission for 4 months now and has started weening off the steroids. She is doing great right now and we couldn’t be happier with that!
Michael never showed any symptoms until he started getting a “cold.” We brought him in several times because of puffy eyes and kept being told it was a sinus infection, head cold or some kind of allergy.
He ended up being admitted in the hospital because one morning he woke up and his eyes were severely swollen shut. They ran tests and found out he had RSV and also mono (no idea where he got that from, he does not go to daycare).
Along with the puffy eyes, he also had swollen genitals, feet and belly. His pediatrician had a suspicion that it may possibly be Nephrotic Syndrome and had the tests done and that brings me to today.
Michael has been taking Prednisone for almost four weeks now and seems to be responding well. We start to decrease it next month. With the Prednisone has come mood swings, temper tantrums and lack of sleep. I am so thankful to have come across NephCure and to have the support and knowing that I am not alone.
Mikaela was diagnosed with minimal change at age 2. It’s been a tough journey since she is steroid dependent and has had many relapses. After undergoing a biopsy her diagnosis changed to c1q nephropathy and her meds changed to tacrolimus. We are currently in remission and trying to wean down steroids. Mikaela is a lovely sweet child but it has been hard with the steroid side effects of behavioral issues.
Her pediatrician found that Miranda was spilling protein. As a result, Miranda was put on prednisone and referred her to Drs. Sakcarcan and Holleman, pediatric nephrologists with the University of South Carolina’s School of Medicine, who diagnosed her with Nephrotic Syndrome and put her on an increasing amount of prednisone and also prograf.
Miranda then had a biopsy to determine the exact problem. However, Dr. Sakcarcan found that Miranda had only one kidney on her right side and he did not get enough of a sample to determine any cause of the disease.
Miranda gained so much weight so fast it stretched her skin terribly. It also took all her energy away. Before this, Miranda had two speeds, wide open and dead stop, and always had energy to spare. Prior to being diagnosed, Miranda was thin and all she would eat were pizza, hamburgers, and fries. We didn’t even care about her unhealthy eating habits because she was at least eating. Even today, those are the foods she prefers even though she knows they are not good for her.
Thankfully, Miranda was able to come off the prednisone and prograf after a year and was off the medication for about a year. However, she once again caught the flu and started spilling the proteins all over again. She was put on 80 mg of prednisone and diovan. This time she gained weight so fast that it left scars on her body. Her torso looks as if she has burn scars.
Dr. Holleman, performed another biopsy in March 2010 and it was determined Miranda has Membranous Nephropathy. She was tested for underlying causes; such as lupus, but no causes were found.
Teenage years are very tough time for girls. For Miranda, who is dealing with this disease that has no outward signs other than weight gain and energy loss, it is an especially tough time.
Miranda was an outdoorsman who loved swimming and sports prior to being diagnosed. She played soccer and baseball. Now, if she goes swimming at all she wears long shorts over her swim suit.
She resents the fact she cannot play contact sports and that she will not be able to pursue interests in the military or law enforcement because of her condition.
We pray that a cure will be found not only for Miranda, but for all those with kidney disease. We learned of NephCure at a lunch and learn meeting last November. We will be going on the Charleston Walk and trying to get others interested in helping find a cure.
Told by Miranda’s grandmother, Dawn.
Over the course of 10 months Mossy was constantly unwell. Each time she picked up a virus or infection her eyes and face would become puffy and swollen. We spent a huge amount of time at the Doctor’s with various suggestions including conjunctivitis, allergies etc… I was very worried and I always left the Doctor’s feeling uneasy.
In Dec 2016 Mossy again picked up a virus. The swelling in her face was back but, this time it was also in her legs and stomach. She was lethargic and wanted to be carried all the time. She was also very pale. I started searching the internet for answers. I spent many hours and all signs and symptoms pointed to the kidney disease Nephrotic Syndrome.
Back to the GP I went. I told him I thought she had Nephrotic Syndrome. He told me she did not and to stop googling. Mother’s instinct told me something was very wrong. By the next morning Mossy had become so swollen she could barely open her eyes. I rushed her to hospital where she was admitted for almost 2 weeks. She was very unwell and need albumin infusions, diuretics to help with fluid, antibiotics and constant monitoring as blood pressure was very low and she had fluid on her lungs and around her heart. It was an incredibly scary, stressful time. To see your baby so unwell and feeling so hopeless is something that really takes it’s toll.
We had incredible care though and Mossy is currently of month 3 of treatment. We hope to wean her off medication by the end of June and from there it is a waiting game. It is early days for us but we are hoping for a diagnosis of Minimal Change NS. Children are amazing and so resilient! We are so proud of our darling little girl.
At age 2 my perfect princess was attending daycare and we noticed her swelling up, so I took her to the ER and we got the news that she had Nephrotic Syndrome and we were admitted. Mya responded to steroids and they said it was minimal change, but after a couple relapses we did a biopsy and it came back that she has FSGS. This rare diagnosis with no cure, left me and everyone that knows us and loves Mya confused. Also scared. Everything happened so fast! After numerous blood draws and her being a hard stick she was given PICC lines in the chest and both arms. Now we have a Port in her chest and are currently having problems accessing it. Mya’s disease has progressed over the years. At first, she would be in remission for months at a time. But now, we must go to the outpatient infusion center 3 times a week for albumin infusions. Today, as I write this we are here at Joe DiMaggio children’s hospital with her brother about to get a chest x-ray in the middle of her 4-hour infusion, so we can see what’s wrong with her port. We depend on Medicaid transport and we live about 40 minutes from the hospital, so it’s a mission every time. I can’t work because she is my full-time job and now since it’s summer my son joins us when possible because Medicaid transport doesn’t allow me to bring him most times and then their father has to stay home from work which is harming us even more financially. I try to find ways to work from home but even having the time to do that has become impossible with all the appointments and infusions. It’s tough, but her smile keeps us going. We are currently in the process of getting a second opinion from another doctor. She has also taken other meds, but still relapses. We recently tried Rituximab, a chemo drug, but nothing in her labs have shown improvement. This other doctor is 3 hours away from us in Orlando and he has a study going on that he wants to examine her for. Fingers crossed. Together, with love, we conquer all obstacles.