Rausha's
Page about
Nephrotic Syndrome
This page is dedicated to my son, Ryan. He was diagnosed with Minimal Change Nephrotic Syndrome March 6th of 2001. He was 4 years old. He is now 5 and in remission. I would like to let everyone know what this disease is so that maybe the world will be a little more understanding when they come in contact with children like Ryan. So please take the time to read this page and if you can, share your donations with the National Kidney Foundation so they may be able to further their research on Nephrotic Syndrome and maybe someday find a cure.
Thanks.
Nephrotic Syndrome is not a disease, it is the symptom of various other kidney diseases. Minimal Change is the disease that Ryan suffers from. This type of kidney disease is caused by a microscopic change in the lining of the kidneys as well as the filtering system. Because of the change the symptoms appear rather quickly. This disease usually affects children between the ages of 1 � and 6 years of age. But it is known to affect adults. The symptoms, nephrotic syndrome, begins with a small amount of protein that leaks out through the urine and can be detected only by a certain type of test stick called a Ketostick. In more severe cases, the protein begins to leak out into the body because the liver over produces protein and stops producing Albumin which is a blood product and this causes the walls of the kidneys and the blood veins to thin out. The protein leaks out and causes swelling throughout the body. The swelling can put massive pressure on the necessary organs in the body like the heart and lungs. There is severe pain associated with the swelling. Once diagnosed with Minimal Change NS, treatment with steroid medications begin. The medication itself can be rather harmful and has side effects that cause changes in the body like abnormal hair growth and moon face. Moon face is where the face puffs out to look like a full moon shape and causes a child or an adult to look fat when they really aren't. Steroids also cause increased heart rate and breathing. Because of this massive heart failure can occur. MCNS is treatable but not curable. It can go away after one occurance or can reoccur over time. Some children outgrow the disease by the time they hit puberty. Others don't. It is yet unknown what causes MCNS or any other type of NS for that matter. It may be hereditary or it may not be. NS occurs in 2 out of every 100,000 people. There are other types of NS that I am not familiar with. For diagnosis of other diseases, a kidney biopsy is done. This usually happens when someone with NS is unresponsive to steroids. If Minimal Change is still the diagnosis after the biopsy, the medication changes to chemotherapy. There are many sites out there that can be very helpful with information about MCNS and other types of Kidney Disease, including the official website of the Kidney Foundation. I will work on getting as many links as possible here for those that are interested in learning more.
Below you will find Ryan's story.......
On March 6th 2001 Ryan was rushed to the ER because he couldn't sleep and breathing was getting very hard for him. 1 month prior to that date, I had taken him to the ER for what was diagnosed as and Upper Respiratory Infection and given Bactrim and some cough syrup for him to take. It didn't help and within 2 weeks swelling in his face became evident. So I again took him to emergency to find out what was happening. I was then told he was allergic to sulfer which was the main ingredient of Bactrim. So he was taken off that and put on Cefzil. Within 4 days the swelling should have gone down but it didn't. It increased. Ryan began complaining that his hands and feet hurt. His stomach had almost doubled in diameter. His belly button protruded from his body fiercely. A few days later, he couldn't seem to rest. He would wake several times during the night and would have trouble going back to sleep. He would cry because he hurt all over and he was very tired. I tried everything I knew as a mother to comfort him and find out how to fix it. But I couldn't. So on Mar. 6th, when he just couldn't fall asleep, I took him to ER again. By then his body was so swollen that his weight of just 25 pounds doubled to 50 and he could barely breathe. We walked into the ER and I told them his symptoms and about his other visits. Within 30 minutes he was in an examination room with a nurse trying to take blood and get a urine sample. Ryan was so scared but exhaustion kept him from resisting too much. An hour later, an IV was placed in his hand and the doctor took me outside the room to tell me that she suspected he had Nephrotic Syndrome. I, like most people, had never heard of it and was full of questions. The doctor, Dr. Van Horn, was patient with me and answered all she could. She wasn't a specialist in Kidney problems and couldn't answer everything for me but told me all she could. She then told me he was being admitted to the hospital. I of course cried because I felt so helpless because I couldn't help him. I called his father in Houston to tell him that Ryan was being admitted in Abilene. He didn't take it well but said he would be there as soon as he could. Ryan was admitted at 3:00 am and I was told everything they knew by 4:00. In the pediatric unit his actual doctor came in and told me Ryan would be put on Lassix and Solumedrol by IV. Lassix is a diuretic which helps a person urinate more often so impurities can be driven out. Solumedrol is an IV steroid. I had to sign a consent form for the steroid because of the risk of heart failure. By then I was unsure which was worse, the kidney problem or the side effects of treatment. Ryan finally fell asleep at 5:00 am. By 7:00 they had awakened him to check him over. He was then put on breathing treatments to help his lungs work better. He was measured to see how much swelling he had. He had more blood drawn and had to take another urine test, all before breakfast. The Dr. came in later that morning to tell me Ryan would have to have an Albumin transfusion and that I would have to sign for it to consent that I understood there was the risk of AIDS and other blood diseases connected with the transfusion. Now I had just another disease or problem to think about. After all of that, he began to shrink a little by the next morning. He began to be a bit more active and seemed to feel better. I stayed with him through the time he was there, fearing that if I left him alone he would feel abandoned and because I couldn't stand the thought of leaving him there alone. By the 4th day, he had lost most of the swelling. They had to move his IV to the other hand because it had caused his vein to collapse. He didn't like that too much. He also went through daily blood tests and had to urinate in a urinal and not the toilet. On the 5th day, they removed the IV and began oral Prednisone. He no longer needed the Lassix. He had begun to look sunken by then. It could have been that I had gotten used to him looking so puffy that it seemed that his eyes were sunken. And on the 6th day, we got to take him home. He stayed on the Prednisone for a couple of weeks and his Dr. wanted to ween him off so that we could see if his body would kick in and do what it was supposed to on it's own. But it didn't work. We took Ryan to Ft. Worth every month after that to see his Nephrologist, Dr. Pena. After about 7 months on the Prednisone, we finally got him weened off of it. He has since not taken any medication. He just went back to Dr. Pena on June 17th, 2002 and he is doing great. We still have to check his urine once a week or so but he has not relapsed so far. We keep hoping he never does but there's an 80% chance that he will. So the odds aren't great but we hope he can beat the odds. Each day he's clear, is another day we thank God for. I will try to get some pictures put on here at some point to show the difference we saw in him over the past year or so. Until then, the story will have to do.