{Part Seven} Lily’s Journey with Juvenile Arthritis

Uveitis–what a nasty monster. If I had thought the swollen joints and shots that led up to this point in our journey were tough, I was in for a rude awakening. 

Days turned into weeks and weeks turned into months. The steroid eye drops 4x a day and the weekly methotrexate injections did their best, but were no match for the war going on inside Lily’s body-particularly her eyes. Eye appointments were every 3 weeks and we were in touch or seeing her rheumatologist almost as often.

The abundant inflammation cells turned into fragments, and decreased in number–thus relieving the pressure in her eyes. YES! We thought we were on to something. But, as so often happens with arthritis, the flare rejuvenated itself and came back–nasty as ever. 

Before we knew it, we were back in the rheumatologist’s office faced with the fact that she not only had dangerous inflammation in her eyes, but it was also present in her knees, ankles, feet, wrists, and fingers once again. Apparently the old “tried and true” methotrexate was no longer powerful enough on its own. So, after months on methotrexate and eye drops with minimal success, the world of biological drugs now awaited us.  

The eye doctor and rheumatologist decided on Humira. The choice of drug was somewhat easy–Humira is one of the few drugs that does wonders for uveitis as well as joint inflammation. Our other options were to try an infusion (where Lily would have to have it administered in a clinic or hospital), or try prednisone, which has some horrid side effects.

Humira it was. Lily was ready to start feeling better and we were all ready to take a vacation from going to the doctors’ offices. The drug was pre-approved by our insurance in record time due to the intense uveitis issues. The appointment was set with the rheumatology nurse to be trained on administration of the pen injectable. 

Dr. Keim told us it would be painful. The arthritis community told us it burned–your leg literally felt like it was on fire from the inside out. As a parent, what do you do? Lily was already having troubles with the pain of injecting so much methotrexate into her little body. What would this experience be like? But if we didn’t do this, she could face eye surgery to decrease the pressure, have permanent vision damage or worst case scenario-end up blind. 

So, we did it. We took the Humira leap. We even convinced Lily to “push the button” on the pen at her first injection. 

I knew. Somehow, I just knew. I knew in my gut that this would somehow alter our lives–I just wasn’t sure if it was going to make everything better or worse.  And the result? It was two-fold. We started Humira in August 2017. By October, the uveitis was gone. We were done with steroid gel eye drops for good. Lily’s fingers and wrists were free of inflammation. Her knees and feet were still somewhat swollen and painful, but we were hoping that would continue to get better as time progressed. 

But, I said the results were two-fold, and the flip side of this was not the fact that her knees and feet were still in pain. The flip side was so much worse.

Anxiety levels spiked to an all-time high. Each injection induced fear, terror, tears and screaming. It was almost more than she could take, and I can’t put into words what it did to my sanity as a mother. When those Humira shot days came around, we would have to send her sisters out of the room. It would take almost a half hour just to get her calmed down enough to inject the 10-12 second drug into her leg subcutaneously. “Why are you doing this to me” and “I don’t understand why I have to do this if my legs still hurt?” would be screamed in our faces as we tried to get past this hurdle in our night. 

Each time, it took longer to get her to calm down enough to administer the injection. The anxiety increased, the tears were agonizing to watch. Yet, could I blame her? I had adults tell me that they quit because the pain was too unbearable–and yet, I was expecting my 10 year old to take it without any issues? We ended up having to start giving her a sedative (Ativan) in order to calm her down enough to give her the meds. Yes, I was faced with the fact that I had asked for meds to give our daughter in order to give more meds to my daughter. Sounds crazy right? To this day, I still can’t believe we are here and this is part of our normal life. 

As I sat here typing this up tonight, just six hours after going through this injection once again, I amHumira Lily reminded how strong our kids with arthritis are. Eight hours ago she was given Ativan to calm her down enough to inject the Humira.  Seven hours ago we put a lidocaine cream on her leg to numb it to take away as much of the pain as possible. Six hours ago, she fought us, screaming and crying until she was literally out of energy and had to endure the shot–then crying in our arms telling us how much it burned, long past the time the meds were in and the needle was out of her leg. 

Now, at 9 pm, she was in our living room, laughing, performing a dance and singing routine with her sister and friend [who is sleeping over]. Her knees are both swollen and she is exhausted, but refuses to give up, give in, or let arthritis take what she wants out of life. I only hope she keeps that twinkle in her eye and the spring in her step through the rest of this journey. #toughstuff #findacure 

And please, never forget, #kidsgetarthritistoo 


ABOUT ANNE

Anne LaurentAnne 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.  

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