Part 2 Living with an Invisible Illness: Lily’s Journey with Juvenile Arthritis


LilyWhen I ended the blog last time, I found myself sitting in the office of a pediatric rheumatologist with my 4 year old daughter, whose knee was the size of a softball, wondering how in the world we ended up here. We had been through knee aspirations at the surgery center, specialists, testing, etc., with no answers yet. Did kids really get arthritis? Or–was it something worse?

Lily Juvenile ArthritisBlood Tests. Who knew so much blood could come out of someone so small? I believe the first time that they drew blood from Lily, they took about 7 tubes. Have you ever tried to take 7 tubes of blood from a 4 year old who is in chronic pain to begin with? For the life of me, I can’t even find words to describe how incredibly shaken I was during that experience–and it was JUST a blood draw! The terrified look in her eyes as they wrapped the tourniquet around her arm, as well as her crying for me when they brought out the butterfly needle (mind you–the smallest, least painful needle possible) will stay with me forever. Names of tests were thrown around: CBC w/Manual Diff, Rheumatoid Factor, Comprehensive Metabolic Panel, Strep Assay, Urine Culture and Lyme’s Disease were just some of the tests they did. It was overwhelming, yet, having a degree in laboratory science, I was thankful that I knew what all the tests were, what they were testing for, and which labs we would get back right away, and which we would likely have to wait for.

Then I thought–LYME’S DISEASE!? WHAT?! I thought we were here for something arthritis related—how did it jump to that?! Did I miss a tick somewhere and now she is suffering? Is that a forever thing? WHY is he testing for that???? So, I asked. Apparently, there is something called “Lyme’s Arthritis”, which is a tick-borne illness, a side effect if you will, of Lyme’s Disease. It is successfully treated with antibiotics if caught early enough. Oooh, I thought. That isn’t such a bad thing. We caught it early, so maybe if that is it, we can treat whatever this is with antibiotics and be done and over it.

No such luck. Everything we had tested with all that blood that they took from my little girl (who screamed and fought through the entire process) came back negative. Even the Rheumatoid Factor was negative—which I thought meant it was not Rheumatoid Arthritis. Wrong again. You can have Rheumatoid Arthritis, but be “seronegative”, as they call it.  Lucky us.

So what did come back positive? How did we know it was arthritis? Almost all of the standard chemistry tests (CMP) and hematology tests (CBC) came back normal. However, 2 key tests were abnormal:  C reactive protein (CRP) and Erythrocyte Sedimentation Rate (ESR). “Yay! We finally had something to go off of” I thought to myself. Great news (in a weird way). Wrong yet again. The bad news we now faced: They are both general, non-specific measures of inflammation in the body. In addition to those 2 tests, she also tested positive for Strep Group A (your normal strep throat culprit).  Does strep throat have anything to do with arthritis? And, why did her throat not even hurting one bit (she was completely asymptomatic) while she tested positive!?

Okay, so we now have 2 non-specific tests that are positive for inflammation, and she has strep throat. What kind of inflammation and where it stems from, we have no idea. This is seriously starting to rattle me. Can no one—not even a specialist—give us ANY solid answers?

The plan now is that we will treat her for strep with antibiotics. She will have a 10 day course, as well as liquid naproxen (for pain in her knees) and hopefully the swelling will subside. There is such a thing called Post Infectious Arthritis—which means swelling as a result of an infection (like strep). Sadly enough, while the rheumatologist told us it is always a possibility, there isn’t a ton known about it.  We can treat her for the strep and see what happens with her knee.

The antibiotics worked. The strep went away. But the fluid?  Unfortunately it was here to stay.

By now it was mid-March (2.5 months after initially finding her swollen knee), and we needed to get the fluid off of her joints so that the prolonged exposure wouldn’t cause any damage. Steroid injections right into the joint were the next course of treatment. More hospitals, more IVs to be ripped out, and more pain for our little girl. So, on April 1, 2011, Lily went in for her first steroid injection. And guess what!? It worked!! The fluid subsided and all was well in the world again.

Until 5 months later when she came to me, with tears in her eyes, telling me that her knees hurt (KEYWORD: knees, not knee like last time). I looked down to see both knees swollen, and my heart just broke in two. And, she was limping when she walked.

How did I not notice this? Had it happened over night AGAIN? Is this what she (and us as parents) would be facing every few months for the rest of her life—her being fine one day, then in tears and incapacitated the next? A thousand thoughts swirled through my mind as I thought about her quality of life, her future, and what this disease may ultimately take away from our little girl, who has just begun her journey through life. So 5 months after her first steroid injection, I picked up the phone, called the rheumatologist’s office, and we started all over….

Be sure to check back in as Anne will continue to share Lily’s journey with us.

Anne is a mother of 3 girls—twin 10 year olds and a 5 year old. She lives in Ledgeview with her husband Steve, their three girls, and their dog Daisy. She attended UW-Milwaukee and received a degree in Clinical Laboratory Science with minors in Chemistry and Nutrition. After having twins and staying home for 3 years, she somewhat fell into a position as a Coordinator of a non-profit adult literacy group, and has been working part time from home for the past 7 years.  She enjoys chatting with friends, cake decorating, volunteering at school, helping coach softball and is continuously getting reigned into new projects within the groups she volunteers for. With one of her daughters being diagnosed with juvenile arthritis at age 4, the Arthritis Foundation has become a huge influence in the Laurent family’s household.