Breanna was only 14 months old when it all began. I just started a job at the state school for severely disabled children. I think that was a blessing from the lord preparing me for what was next to come. For her it hit all at once. One morning she could not straighten or bend her right knee. My new boss was very understanding. Doctors thought it was a sprain at first. Because her X-rays were all normal they knew it wasn’t broken. Our directions were to give her ibuprofen every 6 hours and to keep her off of it. Bring her back in a couple of weeks if she was not better. I brought her back in just a couple of days. The swelling was getting worse: really hot, swollen and she would wake from naps in great pain. She began to walk at 9 months old and now at 14 months old she could no longer walk or crawl. She did this army type crawl or just sat and screamed. Her regular pediatrician started her on naproxen and ordered more x-rays. These x-rays cost me $75 each and again they told us nothing. Her doctor tells me just give it some time. She must have injured herself falling or climbing. I tried to tell him that she did not and that she has never climbed on anything, but he was not hearing me. Bring her back in a couple weeks if she is not better. Again, I brought her back, just a few days later the other leg was not working now. Her doctor wanted to order more x-rays, but I was furious at this point and refused to pay for more x-rays that were telling us nothing. I demanded a referral to a specialist. We were sent to Children’s Mercy. The orthopedic specialist spent just 10 minutes with us. He told me that day she had arthritis and sent us for blood work to make sure.
I thought this was crazy only old people get arthritis. I work with disabled children and I have seen a lot of things, but never a child with arthritis. I was glad to get the confirmation call at my job. I worked at Helen Davis where I was surrounded by caring adults and remarkable children overcoming obstacles. I knew that this was God’s way of letting me know that we could handle this and that it was not the worst thing that could ever happen. It was still devastating to know that my daughter’s pain was not going to go away as fast as it began. Thankfully, I had the experience of taking care of disabled children and co-workers that were willing to help me. I also knew some of the kids I taught were battling things much worse than arthritis.
We are lucky to have a pediatric rheumatologist just an hour away from our house. Dr. Lasky checked over Bre’s joints and we realized that it was in both knees, both ankles and she had some finger involvement. I remembered asking her doctor about that fat finger when she was just a few months old, but never really worrying about it much then. First thing he ordered was steroid injections into the knees and ankles. My husband and I were pretty scared. She was just 16 months old and this seemed like a big procedure. When we returned home that same evening after the procedure she climbed on top of the kitchen table. She had not been walking for months now and she had never been able to climb. We knew that this was an absolute miracle. When we went back to her doctor he informed us that the results would not last. We had to start the methotrexate. Like most parents we were scared and did not want to give it to our daughter. I prayed hard and put it in God’s hands. We had really good luck with it for a couple years. We gave it orally and avoided the in home shots. Her appetite was going down hill fast. She developed sores in her mouth. We added folic acid supplements and painted her mouth with a medication called"mouth magic". Things were getting rough and she was getting to where she refused to take the medication by mouth and would just spit it out.
Her regular physician questioned why she had to take that hard of a drug at all. He showed me her growth chart and explained to me since beginning the drug and losing her appetite that her growth was also affected. He began questioning if she needed the methotrexate at all. This began me questioning and against the wishes of her RA we stopped the methotrexate. She went a whole summer with no problems, but just like Dr. Lasky. her RA, said the arthritis came back with a vengeance.
We now have arthritis in knees, ankles and several small joints in both feet. She could not get shoes on her feet for a long time. The steroid injections did not work as well this time. I really made problems worse for her by stopping the medications. I changed her regular pediatrician to my doctor who has some experience treating children with arthritis. I started to really do my homework on what having arthritis means for my child. The researches lead me on a journey of knowledge. My daughter was not likely to just grow out of this disease. She is RF and ANA positive, meaning that her immune system has two glitches and these things don’t usually just disappear. I had to come to grips with the long term life of this. We had been fighting it for 2 years before I really accepted it and learned to do the research myself not to just rely on doctors. I will never lose hope of a life without arthritis for my daughter. I will always have hope for the best but be prepared for the worse.
We have found a local arthritis community services office and Debbie Braby. Debbie is an angel she came to me at my weakest time. She was the first person that was able to really relate to what I was going through. She told me that she has two daughters with arthritis and she has opened a whole new world for me and my daughter. We now attend regular arthritis swim classes. Although, Breanna is the only child in the class we still enjoy going and it really does help. We were also given a scholarship to go to the National JRA conference. That was a total life changing moment for us. Breanna and I learned that we are not alone there are lots of children and parents going through this and she was not the only baby diagnosed.
We have found a “can-do” attitude changes everything we no longer focus on what we can’t do we focus on what we can do! I decided to go back to school to become a physical therapist assistant when we couldn’t find someone local to do physical therapy for Breanna. I am proud to say I was accepted and I am half way through the program now. Breanna realizes that she can’t roller skate but she is a great swimmer. She wanted to play soccer really bad but decided she was better at softball. We try to not sweat the small stuff. She wants to walk to school with her friends and her sister instead of riding the short bus. On the days she can, she does I just call and let them know not to pick her up. She still gets the ride home because she is pretty much exhausted at the end of the day. Arthritis has been a crazy roller coaster of ups and downs. We try to cherish the ups and realize the downs will pass. We are on this journey together our whole family has been affected by this We are going to do our best to enjoy the ride. We have met some of the most extraordinary people and we have discovered strengths we never knew we had. God does have a plan and Breanna is being prepared to do really great things for God. That’s what I tell her when she is having a really bad day. I also secretly tell her that she is the toughest kid I know and by far the strongest of my 4 children.
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