Thursday, July 24, 2014

Face's of Juvenile Rheumatoid Arthritis part 2

I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”  John 16.33

I finally decided that if our son had any chance of recovery I was going to have to advocate for my baby and get myself educated. So I started documenting EVERYTHING. I took photo's of the rash and documented exactly when it came in relation to the fever and what other symptoms he had. I documented how his fever would not break even with Motrin or Tylenol until it was good and ready, and then it would rapidly drop to 94.0 and he would shake violently for hours. I knew in my soul this was not a bone issue, but a systemic (whole body)problem so I pushed. For 2 weeks, I pushed. I had to push against my own family at times because they felt like the Doctors knew better than me, they were wrong. Never underestimate a mothers instinct!  I was about to have our 2nd child any minute and Jackson was not getting better. The Infectious disease doc made the decision to let us go home on IV antibiotics and return for more testing in 3 days. I was blessed enough to have an OBGYN agree to induce me in so I could have the baby and get back to figuring out what was happening. 
On January 19th we welcomed our beautiful baby girl Jenna Claire, as I have posted before, she was born to be content and that she was. The next few visits consisted of bone marrow tests, spinal taps, and everything else under the sun. When Infectious disease finally decided they had ruled out any freak disease they referred us to the one who saved our son's mobility. His pediatric Rheumatologist at ACH, her name is Dr.Morris and she was a hard lady. She came in, looked at my journal and plainly said ( I know because I wrote this down as well, Lord knows I would not remember) , "Mrs.Orman, your son has Juvenile Rheumatoid Arthritis with a Systemic Onset, meaning his whole body is being affected. Joints, blood cells, platelets, all of it. JA is cannot be cured, but WILL control it if you can handle what has to be done." SAY WHAT? I knew I was not crazy (yea I didn't know that, that would be a lie, I have always been a little off), so she sent us home with a prescription for daily immune suppressant injections that costed approx $1500 a month. Thank you JESUS we had insurance that didn't argue too much. We started the daily shots and it immediately (seriously after like 2 shots) it killed the rash and fever. The problem was that it was not helping his all. Praise the Lord, again, I found an online site for parents of kids with arthritis. Those ladies saved what little sanity I had left. They encouraged me to push hard for steroids for Jackson, they told me the steroids are not ideal but they would get him mobile. So I called I started begging his Rheumatologist, calling I know 6 times every day until she finally caved in and gave us the steroids. She has seen lots of damage done to children by over use of steroids when that's the only drug we had. 
After 3 doses of Prednisone at a grown mans dose Jackson was riding his bike again! The steroids gave his body a jump on getting the inflammation down and the injections maintained it. Over the course of about 3-4 months Jackson went from having swollen knees that looked like baseballs and hip pain that had him walking like at 95 year old, to a sweet, round faced little chipmunk that could run like the wind again.

I don't know how Jackson's JA journey would have ended because he left this Earth way too soon, but I can say he successfully weaned off the steroids and one of his weekly injections.  WE were down to one shot daily and no meds by mouth. The summer that Jackson went to Heaven we planned to start trying to wean the immunosuppressant to see if he would "flare" and what his body could do after approx 3 years of daily shots. I was scared and so was he. I remember him asking me "If we stop my shots, I won't be able to run as fast will I ? " I remember being so sad that my baby was dependent at 5 years old on a daily shot, but hey it was working and he stronger for it. He learned to Cowboy up from all the pain he suffered, he learned to smile through pain. He taught me that if I want something bad enough, I have to be willing to grit my teeth and go for it.

I can also say that though we don't know how his journey with JA would end, and while JA did not take Jackson's life, I rest knowing that Jackson David no longer gives a hoot that he ever fought JA. He could be riding a horse with wings this very moment for all we know, pain free with nothing holding him back now. I will tell you how I KNOW he is not held down by any pain, I was given a promise and I repeat it everyday at some point to myself. I need this promise like air and I live my life and I breath by this promise. I wear this promise on me at all times on my necklace or bracelet, I need to be reminded that the pain I live with daily being here on Earth without my son will end. Here is God's promise to me and to all who know Jesus. Amen.

Revelation 21:4 He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever."

I have gained many amazing friends through Jackson's journey with JA, and honestly I doubt they know the impact they had on our journey. To all my JA mom's I love you and I pray for your kids and all they endure. Thank you for making that journey bearable and for cheering us on. And to anyone else who read this story, I pray that now you SEE and understand that Arthritis is not just some old people "thing" it is debilitating and it cripples kids as well as adults everyday.  

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.