A Possible Cause

Luke continues to do well on the Prograf. The kidneys are still leaking protein, but the medicine is agreeing with him and he is feeling really good. Like I have said in the past, I love to write, especially for an audience, but no news is good news. This blog has done a lot for us in the communication department, but it has also led me to some interesting information about Nephrotic Syndrome that I had never heard of before. Of course, I am no expert by any means, but once you get into the support groups, and spend enough time in a nephrologist's office, you would think that Sean and I would have at least touched on every aspect of the disease that is ailing our little boy.

I was online reading about Luke's condition when I decided to google some key words to see if my blog would pop up. I had never seen something I had written come up in a search engine and thought it would be a neat thing to see. I googled "Luke" and "Nephrotic Syndrome." Yes, my blog did come up (very cool), but I also stumbled upon a very interesting article about a boy named Luke. The article was actually a letter written to Dr. Green. Dr. Green is an online doctor that you can write to about medical concerns and he will answer you back. Is Dr. Green actually a doctor? I have no idea, and would never look to an online doctor to treat myself or my children, but the letter and the response were both worth reading. The letter was from a concerned father whose son, Luke, had knocked over a bee hive and was stung 30-40 times. The boy got a terrible rash all over his body, and then got very high fevers. The father went on to ask Dr. Green if there was anything else he should be worried about. He was assuming that his son still had a high level of bee toxins in his body and wanted to know what else to look out for.

Dr. Green's response blew me away. With my mouth hanging open I read all the things that this boy could get from the bee toxins. One of the things that this particular Luke needed to worry about was Nephrotic Syndrome. WOW!!! I was, to say the least, in shock. Why so shocking? Well, this past summer Luke got stung twice in the hand and once in the side of his torso. He then had a horrible rash all over his body, and then high fevers for about three nights in a row. When he had gotten stung I took him to the ER because I did not know what was normal, and what was not. He had a little swelling around each sting, but no other symptoms so they said he was fine and sent us home. A little later he got a terrible rash all over his body. I took him to the pediatrician three times while he had the rash because it kept changing and never seemed to get better. At the first visit I was told he had Summer Eczema. At the second visit I was told he had Hand Foot and Mouth Disease. At the third visit I was told it was an allergic reaction, and I would never figure out what it was. We were given medicine, and the rash finally went away. A week later....high fevers three nights in a row. He had no other symptoms at that time, only the fevers. They tested him for Leukemia, which he did not have, and summed it up to his body fighting something off and then he was fine. Never were any of these issues linked together, although they were all in his chart, even the bee stings, because he went to the ER. I figured this was a bad summer for him and thought nothing of it. Then in September right around his 2nd birthday he got a virus and was vomiting with a high fever. All along we have thought that this was the virus that triggered his kidney disease, but never did we think the events of the past three months had also been connected.

We cannot know for sure if it was the bees or not. It would be bitter sweet to know the answer to this question. If it was the bees then Sean and I could put to rest the guilty feelings of wondering if we had unknowingly exposed him to something that had harmed his little kidneys. We have wondered about everything from vaccinations to formula to me skipping a prenatal vitamin or two while I was pregnant with him. We could also put to rest the thought that this could be genetic. We could stop worrying about Lexi getting it, and know that he can go into remission. On the other hand if it was the bees then we need to forever be afraid to play outside, and I might find myself dressing Alexa in a suit of armor to play with her friends! We plan to discuss these findings at our next nephrologist appointment. Not that this could help cure him any faster, but it definitely takes a load off of our shoulders.

In other news, Alexa is holding her head up and getting bigger and stronger everyday. Sean has started working afternoons. He leaves the house around 1:00 pm and gets home around midnight. Luke is loving all the playtime with daddy, but is not happy about mommy having to put Alexa to sleep, and not lay with him when it is time to go to bed. He says, "daddy do it!" as soon as I start to rock her to sleep, and I have to remind him that daddy is at work. Thank God Alexa goes down fast and stays down all night!

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

"Some people think that doctors and nurses can put scrambled eggs back into the shell."
-Dorothy Canfield Fisher