Emma's Story

This is Emma's story.

Emma is a three year old brunette with gorgeous blue eyes. She is as sassy as the day is long so, in mid December 2007 when she seemed to be tired alot and not really acting like herself my husband and I became worried that she was coming down with something. She had normal symptoms, a low grade fever, a cough and a runny nose. We also noticed that her belly looked distended but due to the fact that it was around the holidays we assumed that maybe she was just gaining weight from eating so much good food. We treated her with Tylenol Cold and Flu for a few days. The symptoms didn't seem to improve very much. We became more worried when Emma woke up one morning and both of her eyes were so swollen that she couldn't even open them all the way. We took her to our pedatrician and she diagnosed her with an acute sinus infection and told us to treat her with Benadryl for a few days and that should reduce the swelling. After a few days of the Benadryl the swelling was not going away, in fact, it was spreading. By this point her legs had begun to swell as well. She had also developed a really nasty sounding cough and was having trouble sleeping through the night. My husband and I finally decided to take her to a Childrens Healthcare Emergency facility. The ran some tests on her and did a chest x-ray and at that point diagnosed her with pneumonia. My husband and I were feeling really guilty that we didn't take her to the emergency room sooner. The doctor gave us Amoxicillian to treat the pneumonia and told us to follow up with her regular pediatrician in 10 days. Well, by about the 7th day when she was so lethargic that she wasn't eating, drinking or urinating anymore we took her back AGAIN to the emergency room. This time we got lucky....the doctor on call just so happened to have seen a case of Nephrotic Syndrome a few months back in a little boy who was brought in to the emergency room. It was the first case of NS that she had ever seen. She speculated according to the symptoms that Emma exhibited that she had NS. They did a urine test and, sure enough, she was spilling large amounts of protein. They did an allergy test on her arm and told us to come back in 48 hours and if the allergy test was negative that she would be started on Prednisone to treat the NS. She told us that Emma would have to be on the medicine for 4-6 weeks before we would know for sure whether or not her body would respond to treatment. She hooked us up with the BEST Nephrologist in Atlanta, Dr. Julias Sherwinter!! Why do I say that, because I called him, freaking out, on the Sunday morning before we were supposed to take her back to the hospital to get her started on the Prednisone because she was crying that her legs were hurting really bad. I was ready to take her back to the emergency room ASAP but he called me back within 10 minutes and stayed on the phone with me for several minutes talking me "off the ledge". I will forever hail him as the best doctor EITHER of my children have ever had!!! We took her back as scheduled after the 48 hours and she started her regiment of Prednisone. That was rough to say the least. She gained about 10-15lbs over the course of the four weeks she was on the steriod. She also had alot of unwanted hair growth (that I am really hoping goes away when she stops taking the medicine). The worst thing, I would say, were the mood swings. I mean girls are emotional already without added drugs that make them worse!!! She could go from the sweetest three year old you would ever meet to the meanest little girl and I would want to sell her to the neighbors!! Luckily, the four weeks passed by with no big events and we went back in February to follow up with Dr. Sherwinter. I was more nervous for that doctors appointment that I have ever been in my life, I think. When he told me that her urine came back negitive I wanted to scream at the top of my lungs. I was happiest I had been in a long time. I just kept thanking God for answering all of our prayers. GOD IS GOOD!!!!! He does answer prayers!!!! Dr. Sherwinter diagnosed her as having Minimal Change Nephrotic Syndrome and told us the percentages for relapses vs. no relapses. I wasn't pleased at the spread. Apparently 80-85% of kids have relapses and 10-15% of kids never have another episode. Right now, Emma is being weaned off of the steriod and doing great!! We test her urine every day which we will apparently have to do every day for the next three to four years until we are sure she isn't going to relapse. She has episodes where she will pee a +1 or a +2 sporadically but never for 3-4 consecutive days (knock on wood)! She still has two more months before she will be totally steriod free and we can't wait. We may not be totally out of the woods yet but I feel like I can see the light at the end of the tunnel. I will just keep praying to God that he heals Emma's body and that she will be in that 10-15% of kids who never again have to deal with this illness. My heart and prayers to out to the families of those children who have a more severe case of NS. I got a real glimpse of what it must feel like to be a parent of a child with a terminal illness. Even though, (praise God), she looks to be on the road to recovery, for a brief time we weren't sure whether she would be okay or not and as a parent that is the scariest feeling in the whole wide world.