Tuesday, July 15, 2014

The many face's of Juvenile Arthritis, Part 1

1 Chronicles 16:11
Look to the LORD and his strength; seek his face always
     July 29th will be Jackson's birthday, he would be turning 10 years old. While I'm still amazed that Josh and I are old enough to have a 10 year old, I'm crushed that we don't have him here on Earth anymore. This realization is never more real than when its time to celebrate his life and he is not here to celebrate with us. 
I have been going through old pictures of Jackson this month and posting a few on Facebook as a celebration of his upcoming birthday. Looking through all the old photo's I have come across many from when he was deep in battle with (JRA) Juvenile Rheumatoid Arthritis AKA Juvenile Idiopathic Arthritis (JIA) with Systemic Onset. I am blown away at what he went through and the pain he lived with. While JRA did not take Jackson's life, it certainly altered his life and threatened to cripple him. It also made him who he was, a fighter. I want to share some of the struggles we faced when we were finally able to get a diagnosis, not only will it help paint the picture of how strong Jackson really was, it may help another parent searching for answers about JRA, particularly "Systemic Onset" which was the type my Jackson had. I know some of these photos will be hard to look at, but there are so many wonderful kids that we personally got to know on our JA journey that helped us through photos and advice that I feel like I owe it to any other parents who are at that breaking point. I will have to write these next few blogs in separate parts. Mainly because it's to long of a journey to read in one sitting, but also because it takes me down a very hard road that is very emotional, bare with me this will be different than my other posts.  Here we go. 

On January 2nd 2007 our 2 1/2 year old, Jackson woke up and could not walk. I stood him up and he would cry out in pain and fall to the ground. He had no other symptoms and as the day wore on he "loosened" up and seemed much better, and then the fever hit. Out of no where he had 103 with the only symptom being "I can't walk". We took him to his pediatrician who admitted him for "fever of unknown origin" and high platelet count. After admission his blood work was getting worse and worse. Platelets were over a million (I'm told that was unheard of) and his ESR or SED rate (show's inflammation in the body) was extremely elevated. We were shipped to Arkansas Childrens Hospital via Ambulance when his pediatrician suspected we were dealing something much bigger brewing than she could treat. I was 37 weeks pregnant with my daughter, so that was a LONG ambulance ride and the first of many medical personal over 2 weeks saying "Don't go into labor , we don't want to deliver!".

On arrival at Children's Jackson was seen by a gazillion "specialists" all wanting to see him try and walk, all interested in how the fever would not relent until it was good and ready. He was seen by team's of doctor's. We saw a team of Oncologist's who suspected some type of cancer, we saw Infectious disease doctors who suspected rare forms of infections. When we met the orthopedic doctor's I can say they were my least favorite team. I tried to explain to them that he would get an odd rash with every fever and that I did not feel like there was a bone issue, but that this seemed to be a whole body issue. They would hear none of that, they explained the ever disappearing rash to fever and pressed me to allow them to "drain" his hip's to see if that would help the pain. I reluctantly (only because my family out numbered me) allowed them. They came back and said that they believed he had septic hips.....Ok. I would possibly go along with one septic (badly infected) joint, but both joints on both sides of his body? I again attempted to argue and was told "Its rare but it happened, his White count in one hip is 90,000, that is infection 'mam." So they cut and drained both of his hips and put him on strong antibiotics and inserted drains into his tiny hips, and we waited. And we waited. He was not getting better, the fever came like clock work every afternoon and was hitting 105 at times. Along with the fever came that pesky disappearing rash that only I seemed to notice or care about. He seemed to be wasting away and certainly no better than when we started, in fact, he was worse at 2 1/2 years old he weighed 22 lbs. 

                                 The disappearing rash

This concludes part one of the many faces of Juvenile Arthritis. It's emotionally draining for this mom, and way to long of a journey for you to read in one sitting. Stay tuned for the diagnosis on the next blog in this journey down the diagnosis road. 

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