Since July is Juvenile Arthritis Awareness Month, I thought I would share some of Olivia's story. So, here goes...Olivia was diagnosed with SJIA/MAS at 10 months old. It started with a rash that lasted about a week. During this time the rash would almost disappear during the day and return at night. She was also experiencing fevers that would fade during the day and return at night. We had made several trips to see her pediatrician and at first they just thought it was a virus. After a week of this, they did some blood work and found that her WBC (19.5) was extremely high. They were still thinking it was due to a virus and said to monitor her over the weekend and return on Monday if she wasn’t any better. This didn’t seem accurate to us because she wasn’t showing any other symptoms that would make us believe it was a virus.
 |
| The day she was admitted. -2014- |
We returned to the pediatrician on Tuesday and they did labs again to check her WBC and it was even higher (30) than it was on Friday. Unsure of exactly what was going on, he recommended we take her to the closest children’s hospital. We ended up seeing Infectious Disease, Rheumatology, and Hematology while there. Since Olivia couldn’t walk yet, we were unsure of any joint pain. She never seemed like she was in pain at all, but they did point out some areas that looked swollen. While there, she underwent a Bone Marrow Aspiration, a Lumbar Puncture, a TB test, a PICC line in her arm, lots of imaging, and lots of blood draws. She stayed in the hospital for three weeks total. We were there a whole week before they had an idea of what was going on. They began daily injections of Kineret and some steroids the second week and it cleared up her rash. They had sent off some genetic testing that tested for HLH also and she was put on extra medication for that until results came back. At the end of the three weeks, she was sent home on high dose steroids, Actemra infusions which were every two weeks at the hospital, Dexamethasone, and Cyclosporine.
 |
| This is Olivia now. -2017- |
As she continued these medications at home, she began getting really puffy from the steroids and the Cyclosporine was causing hair growth. Our precious girl didn’t look like herself anymore, but she didn’t let any of that get in her way. She was always making us laugh no matter what she was doing. We were eventually able to wean off of some medications and change others. She ended up having an Anaphylactic reaction to Actemra, so we switched back to Kineret because it worked well for her in the hospital. Her HLH testing came back and it showed she just had MAS.
She’s now 3.5 years old and has had a few flare-ups with MAS, but we have been quick to get it under control. She is currently on Ilaris once a month and Prograf daily. She is very active and has shown that she loves swimming. We weren’t sure that she would ever make it to this point, but she’s showed us just how strong she is. If your interested in donating to The Arthritis Foundation, you can visit here. Olivia received a Power Pack a few months after she was diagnosed and really enjoyed opening it. She loves Happy Mail. If you haven't heard of it and have a child with Juvenile Arthritis, you can sign up here. Last but not least, if you want to raise awareness for Juvenile Arthritis, you can shop their site. We've ordered bracelets and I love their shirts. :)
