We Thought It Was Allergies

Since the beginning of this blog people have been asking me how we knew Luke was sick, and how was he diagnosed. Since there is no news about his current condition until Monday, I figured this post could be about how we entered into the world of Nephrotic Syndrome. For Sean and me it is a world of on-line research, support groups, medication fact sheets, and constant discussion about where this came from and what path should be taken.

On October 20, 2008 Luke woke up with swollen eyes. We figured it was allergies because his eyes had swelled before after playing outside, and we had just turned on the heat for the first time in our new house. We figured the vents were blowing out dust and stuff that he could be sensitive to. His eyes looked better as the day went on, but were swollen again Tuesday morning and then again on Wednesday. On Wednesday I called the pediatrician and we got an appointment that afternoon. At the time I was in my 9th month of pregnancy and Sean was working nights, which was nice because he could help with Luke all day (I was so tired!!) and go to the doctor with us.

The pediatrician agreed that it was probably allergies, but wanted a urine sample just to be sure. He said that about a year ago they saw a kid come in with swollen eyes and it ended up being a very rare kidney disease. We thought nothing of it, the nurse put a little bag on Luke and we were to return the bag once he had urinated in it. The doctor also gave us a prescription for children's Zyrtec, to help with the allergies, we never filled that prescription. After the doctor we stopped at Target to pick up a few things. While we were in Target Luke and I made eye contact and all of a sudden I felt a pit form in my stomach. I knew, looking at those puffy eyes, that something was very wrong. Sean thinks mother's intuition is just a card I play when I want to win a debate over what to do with our children. I am here to tell you that it is very real.

Luke did not urinate in the bag until dinner time. This was strange to us because he guzzles juice and milk all day long. We did not know it at the time, but this is a symptom of Nephrotic Syndrome. In hindsight he had been urinating less and I took that as a sign that he was ready to potty train. We brought the sample back to the doctor and Sean ran it in while Luke and I waited in the car. He was gone a long time and then came out to tell me that the doctor wanted me and Luke to come into the office. We were ushered into an examination room and told that the doctor would be right with us. Sean and I were annoyed and just wanted to get home, what were we waiting for? The doctor came in after a few minutes and told us that Luke's urine was loaded with protein. Sean asked how much protein, and the doctor said it was as much as the test could test for. He told us his kidneys were not functioning correctly and that we needed to go straight to the hospital.While we both felt like we had been kicked in the stomach we still had no idea of the beating we were in for. This was only the first kick in the stomach.

The ride to the hospital was silent. I asked Sean what he thought, and he said we should pray that there is nothing seriously wrong with Luke. When we got to the hospital the pediatric nephrologist had gone for the day, but would talk to the staff in the emergency room over the phone, as they examined Luke. They took blood, and tried to get another urine sample, but Luke was not urinating, and Sean and I refused a catheter. We still were not grasping the seriousness of the problem. We were given a lot of information, which was not retained, at least not by me, and were sent home with a prescription for Prednisone. The doctor at the emergency room said that the Prednisone was a steroid and might make Luke hyper. HYPER? REALLY? HYPER? That's all he could tell us? The medication made Luke an absolute mess, he was anxious and shaking, he would wake up in the morning and lie in bed and cry. He would have screaming fits, throw his toys, and most of the day would not leave the recliner in our family room. He began to blow up and look completely different from his old self. That night I phoned my parents, who were in California for the birth of my nephew, to tell them what was happening. This was the first phone call of hundreds, I should have started the blog then, everyone wanted to help, but again we had no idea....

We finally got to meet with the specialist on Friday, October 24th, he diagnosed Luke with Minimal Change Nephrotic Syndrome. He told us that 90% of kids Luke's age respond to the Prednisone within 5-8 weeks. He said if your going to have a kidney problem, this was the one to have. We left feeling relieved and thinking that in 5-8 weeks he would be better. Three weeks later Alexa was born, Luke was still sick and still acting out from the Prednisone. My 3 night stay in the hospital was very hard for him, he had the normal 2 year old separation anxiety, but the medication magnified it. When I returned home he would not let me out of his sight and did not want me caring for the baby. Again, normal 2 year old reaction, but the screaming and crying were out of control. After being on the medication for about 6 weeks he must have adapted to it, because he began to behave like himself again. This is also about the time we began to realize that he might be in the 10% of kids who do not respond to Prednisone, he was diagnosed as steroid resistant, and again we were kicked in the stomach....a biopsy would be needed. Which brings us to today, we now know the seriousness of what we are dealing with, we have been kicked several times, but are still fighting.

The photo with the pumpkin is about 2 weeks before Luke was diagnosed. The other photo is from his second birthday, one month before being diagnosed.

Please pray for Luke to be strong and continue to breeze through whatever may come next.

"It is not the load that breaks you down - it is the way you carry it."
- Lou Holtz