Roger's Diagnosis

For almost a year my gut has been telling me that something was not right with Roger. One year ago, Roger was an active child. He ran (away), climbed, jumped, and did everything else a normal 1-year-old did. But then something changed. On April 24th last year, we had to take Roger into the emergency room because he woke up and couldn't walk. His right knee was swollen. There were no signs of bruising, abrasions, or anything that would hint of an injury. We concluded that he must have gotten his leg caught between the slats of the crib and twisted it. There were no other explanations, and by the next day he seemed just fine. I noticed early on, perhaps after he was born, that he never had a strong grip. His hands look strange to me, almost like they have atrophied. His knuckles are large, too. Roger stopped running around, and demanded to be carried everywhere. One time, he stood at the top of the stairs because he wanted me to carry him down. I wanted him to be a little more independent and do it himself, but he stood there and screamed for at least 20 minutes, until he won the fight. Looking back, I now feel guilty, because I didn't realize that he was actually in pain. One of the things that has bothered me the most, though, is his lack of desire to run around and play. He likes to sit at the table, sometimes for 2-3 hours, while we're doing school. I ask him if he wants to get down and play, and he gives me an emphatic, "No!" So, I let him be. In October, we rushed him to the ER because he spiked a fever, and there were no explanations for what caused it. Also, often he complains of a sore neck. He drops his jaw and won't move his head from side to side without crying out in pain. It always seems the worst in the morning. Sometimes when I am getting him dressed, he moans in pain, as I try to get his hands through the sleeves of his shirt. I hold him as if he were a porcelain doll, and still support his head and neck as if he were a newborn, when I lay him down to change his diaper. I get nervous when his older siblings wrestle with him. I have been telling friends and family for months that something was not right with him. The way he limps sometimes, and shuffles along, are indicators to me that something is not right. He rarely complains except when he is physically moved by someone other than himself. On Sunday morning I finally told Sam to inspect his hands. Sam agreed that something did not look right. He went back to the computer, and in less than 10 minutes he told me that he figured out what was wrong. Roger has polyarticular juvenile idiopathic arthritis. A chronic disease with no cure. Although this has not been officially diagnosed by a pediatrician, I have read up on this disease, and Roger seems to have all the classic symptoms:

• most commonly affects knees, wrists and ankles
• can affect weight-bearing and other joints, including hips, neck, shoulders and jaw
• often affects the same joint on both sides of the body

(info taken from www.arthritis.org) We had his blood drawn on Monday, and are awaiting the results, and have an appointment lined up with the pediatrician at the end of this month. We also have a consult to see a pediatric rheumatologist up at Seattle Children's Hospital. Hopefully we can get the ball rolling and get some aggressive treatment before we move to England in July. Since this may be depressing to some, I want to share some of the feelings I have felt the past couple of days, since I found out about this. First of all, I am grateful that I finally have an answer to the mystery that has been plaguing me for the past year. I am grateful that we are in the military, because the cost of treatment is very high. I am grateful to be in Washington, since some of the nation's best pediatric rheumatologists are in Seattle. I'm grateful that his disease is not life-threatening, and can even go into remission. I am grateful I homeschool, since many children with JIA miss a lot of school. I am grateful for my husband's and extended family's support, since I can't bear this alone. I am grateful for the gift of the Holy Ghost, that comforts me. I am grateful that we live in a day and age where there are better and more advanced treatments of this disease, and who knows, maybe they'll find a cure! There are too many things to be grateful for, and seem to outweigh the negative. I think we can get through this, and find a way to eliminate his pain so he can return to normal activity. Roger is the sweetest boy. He has an infectious smile, is very polite and friendly, and brings a smile to all who know him. He is the most affectionate child I have, always wanting to be wrapped in "blankie" and cuddled. He loves to give kisses to mommy and daddy. He loves to sing. He loves to pray. He throws a fit sometimes if he doesn't get to say the prayer. He is already starting on a good foundation, because he's going to need all the prayers he can get.