When Monkey was diagnosed with JA I was shocked and confused. I had no clue that a child could have arthritis. Then I found out that there are over 300,000 kids that have been diagnosed with JA! In the past few months I’ve met some JA families through support groups and I’m amazed. Why? Because what these kids go through on a daily basis while still smiling is truly mind blowing. Really puts things into perspective.
Today I’m going to share Brina’s story with you. Brina’s mom, Beverly, asked if I would help her by writing an article about their journey with JA thus far. With her permission, I’m happy to share their story with you.
Brina is a beautiful girl…full of life and always smiling. She loves animals, arts, crafts and school with her favorite subject being math. Looking at this sweet 8 year old girl you would never know there was anything wrong but Brina lives with a disease that is becoming more and more common among children…Juvenile Arthritis.
As a young child Brina developed normally…sitting up, standing and even walking at the early age of nine months. Unfortunately, Brina would get sick frequently...seemingly catching every ‘bug’ that was going around and taking weeks to get better. She also got frequent ear infections which eventually led to surgery. When Brina was four her parents noticed something else was different. Brina’s right pointer finger had swollen up. Thinking it may have been a spider bite they marked and monitored the swelling but it never changed for the better or for the worse.
Brina’s parents took her to their primary care doctor they were told to keep an eye on the finger. That maybe she jammed it and it just needed to heal. When seeing that it was not getting any better the doctor ordered x-rays and put her finger in a splint thinking that she was reinjuring the finger and that was why it wasn’t getting any better. Over the next 16 weeks Brina became more and more uncomfortable as other joints began to swell. Soon ten of her joints were swollen causing her so much pain that she couldn’t walk.
Almost 6 months after their initial appointment with the primary care doctor, Brina’s parents asked her doctor to please refer them to a specialist. After doing some research on their own they were starting to wonder if she had arthritis. In April of 2009 Brina had her first appointment with Dr. Knibbe, a rheumatologist, who confirmed that she in fact had a childhood disease called JRA/JIA, Juvenile Rheumatoid Arthritis/Juvenile Idiopathic Arthritis. JRA/JIA isn’t the same arthritis that most people are used to. It is actually an autoimmune disease that is treated with a variety of medications some which include common cancer drugs.
Over the next month Brina started her new medication regimen. Every week she received an injection of a chemo drug called Methotrexate (MTX) given in her own home. Now, these injections weren’t given by a nurse but by Brina’s own family. When she began the injections her mother tried to give them to her but as you can imagine as a mother this was very difficult. Thankfully Brina’s grandmother stepped in to help with the injections. Brina did her best to understand why she had to get these injections but like any child she was not fond of them. Soon the doctor added Prednisone (steroid) to Brina’s medications. Thankfully this was something she could take orally. Even with the two medications some of Brina’s joints were not improving and the doctor suggested doing a direct injection. After 14 months on the medications Brina’s body stopped responding to them. She was also experiencing some of the unfortunate side effects such as days of nausea and vomiting as well as hair loss and weight loss. The doctor recommended adding a new medication to the list…a biologic drug called Enbrel. During all of this Brina was also experiencing severe stomach discomfort and after seeing a Gastroenterologist was also diagnosed with Crohn’s disease…another autoimmune disease that causes inflammation of the intestines and bowels.
Soon even the Enbrel was failing her and the doctors moved on to another biologic drug called Humeria. This worked similarly to Enbrel except it was administered every two weeks via injection but it caused severe burning at the injection site. Brina was not happy with this new medication at all and often begged her parents to not give it to her. This was all just too much for her young body and spirit.
Brina’s parents decided to seek a second opinion to see if there was a better way to treat her pain and discomfort. In May of 2012 they traveled to Primary Children’s Hospital in Salt Lake City, UT. Here the rheumatologist recommended a drug called Orencia. This medication was a bit different though. It would be dosed via infusion rather than injection at home. This meant that the family would have to travel to Salt Lake City every two weeks so Brina could get an infusion. Thankfully she responded very well to this new treatment and loved her new doctor and infusion nurse.
Brina is now on a monthly infusion of Orencia that seems to be helping with her JA. She will also be starting Physical Therapy soon to help with some of the permanent damage the arthritis has done to her joints. Due to the disease and the immune suppressant nature of the medications that Brina is on she is now homeschooled as well. While Brina is doing better and this disease is being maintained her fight is still ongoing. There is hope for remission in the future and that is something she and her family hold onto tightly.
Juvenile Arthritis is a nasty disease. A disease that not many know about and that many view as a minor problem. What they don’t see are the struggles that the children and parents live with on a daily basis. The pain it causes and the adjustments that they have to make every day to make things a little easier and less painful. This is a real disease and one that people need to be made aware of. Over 300,000 children have been diagnosed and the numbers keep rising. By building awareness of JA and raising funds we can help further research and possibly find better treatment options and maybe even a cure for these hurting children.