No Change is a Good Thing!

Luke had a check up with his rhuematologist a couple weeks ago. The good news is that he is doing well enough on just the methotrexate that we do not need to start infusions yet. Nothing was swollen and he has not had a flare in months. The next step in his treatment if he did have a flare up would be to start infusions of another drug. For this he would have to go to the hospital every other week for three hours and be hooked up to an IV. This is what we most want to avoid, so no change right now is a great thing! After the doctor examined him she told us that he had some weakening in his left leg muscles and wanted us to meet with the physical therapist (PT). The PT came in and did another exam and she also determined that Luke's left leg muscle was slightly smaller and tighter than his right leg. She went through six different exercises for us to do at home every day. These exercises work on his hip, thigh and knee muscles and should build back up the muscles as well as help with range-of-motion.
After we met with the PT, we headed off to have Luke's labs drawn. He has to have bloodwork done every six weeks to make sure that the methotrexate isn't damaging his liver. This is Luke's least favorite thing to do. The nurses at the lab are very kind, qiuck and get the vein on the first stick. We also request that Luke have a numbing cream on his arms beforehand so that helps to dull the pain. His labs all came back normal. We go back again in August and hopefully there will be no change then too!

How it all began...

It’s hard to believe that it has been almost a year since this disease entered our lives. I started keeping a journal because I wanted to be able to look back and see all that Luke has been through. It has also helped me to keep track of the information that the doctors have given us, medications and tests. So here is our journey thus far.

 June 28^th, 2010

Luke woke up with hugely swollen knees and was unable to walk. He crawled out of his bedroom and sat at the top of the stairs crying that he couldn’t walk and that his legs hurt. I called the pediatrician and got him in that day. Her first thought was that maybe a virus had settled in his knees. The doctor ordered blood work to rule out some other things and prescribed naproxen. The naproxen helped with the pain and some of the swelling, but his knees remained noticeably enlarged.  A few days later the doctor called to tell us that there were some slight abnormalities in his labs including elevated RA factor and ANA level. We went back to the pediatrician a few days later and he referred us to a pediatric rheumatologist at Riley Children’s Hospital.

 July 15th, 2010

We took Luke to see a pediatric rheumatologist at Riley Hospital. In order to diagnose JIA there had to be persistent swelling for at least six weeks. We were told to continue the Naproxen and come back in four weeks.

 August 9th, 2010

We returned to Riley. Both of Luke’s knees were still swollen and he now also had swelling in the first two fingers on each hand. He was now officially diagnosed with Juvenile Idiopathic Arthritis. The doctor prescribed methotrexate once a week, and he would have to have labs drawn to check liver functions and red and white blood cell count.

September 20th, 2010

We had an appointment at Riley with the rheumatologist. Luke still has swelling on both knees and first fingers of both hands. The doctor took some measurements of his legs to make sure they were growing at the same rate. His right calf muscle measured a centimeter smaller than his left. She also asked how his stiffness was in the morning. That is difficult for us to gage since we carry him from his room, down the stairs to breakfast. We are going to have him walk in the mornings to see how he does. The doctor increased his dose of methotrexate and also prescribed Zantac to help with stomach upset that he may be having. We go back in six weeks and if he is still not progressing as well as the doctor would like then Luke will probably start Enbrel injections once a week.

October 20th, 2010

Luke woke up with swollen knees, ankles and the tops of his feet looked puffy too. He wouldn’t / couldn’t walk, at least not well. Luke cried off and on all day that his legs hurt. He even asked to go to the doctor so that they could “fix him”. I called Riley and spoke to the nurse. Luke had a sinus infection last week and had just finished a course of antibiotics on Sunday. The nurse gave the info to the doctor and she (the doctor) called me back later in the afternoon. She put Luke on a week-long steroid wean to get the swelling down immediately and then told me that we would be looking at starting Enbrel at his next appointment, which is November 1st.

 October 23, 2010

Luke is on day three of oral steroids. While he swelling has gone down some, he is still having trouble walking. His legs seem to just give way sometimes and he has fallen a few times, once halfway down the stairs.

 November 2010

The steroids got Luke through the JIA flare. I took him to a naturopathic doctor to have his allergies treated using NAET. The treatment involves using acupressure while having him hold a small container of the allergen.  I don’t totally understand how it works, but it worked for him. Luke is no longer allergic to dairy, and has been eating everything from cheese to ice cream without any reaction. She also treated him for heavy metals and leaky gut syndrome. The swelling is gone and he feels okay. We decided to hold off on the Enbrel for now.

December – April

The JIA has been pretty quiet. Luke is still on methotrexate (MTX) but we stopped the naproxen because it was upsetting his stomach too much. Luke has been going up and down the stairs fine and running around without complaint. We still see the rheumatologist every two months.

May 9th,10th,11th

He started complaining again of knee pain over the past few days. He wants to be carried and is laying down a lot. He wouldn’t walk down the stairs and instead scooted down on his bottom. I am reminded that this is a chronic disease.

June 9, 2011

This morning Luke said that his ankles and knees hurt. He did not want to walk down the stairs. We went to a store and he told me that he was going to walk all by himself. By the time we got from the car to the store he had changed his mind and asked to ride in the stroller. He said that his knees and ankle hurt a little too much.

And that brings us up to date.