I met Megan’s mom, Melanie, in one of the JA support groups I’m part of on Facebook. (Don’t laugh…these support groups have been such a wonderful source of encouragement and information.) She and I connected immediately because of our babies being so young with her Megan being diagnosed before she was even 2. I feel so blessed to have been connected with her and have a friend who knows exactly what we’re going through with Monkey.
Today, I’m sharing Megan’s story with you written by her mom, Melanie. I hope that Megan inspires you because this little spitfire is something else! She’s brave and beautiful and is going to do great things! Meet Megan….
Megan was about 18 months old and still not walking. We did a PT evaluation and did a few sessions of PT and she was unwilling to walk, but would pull herself up to stand and play with a toy, she just refused to actually take a step independently. She would walk holding our hands, but never seemed to enjoy it, which was strange for a toddler. We got her special walking shoes and tried to encourage walking. I went to take her shoes off later that evening to give her a bath, and her ankles were swollen and bruised. I panicked and took her to the pediatrician the very next morning. I had also noticed that she had stopped crawling and would only walk around on her knees, upright. She also acted like her hands were hurting very badly when we would clean them off after meals, etc. The MA who came to take vitals asked if anyone in our family had Rheumatoid Arthritis or other autoimmune diseases. I said no, and never gave it another thought. The pedi sent us directly to Nationwide Childrens for labs and X-rays. We did a CBC, and profile, plus a Lyme's test and Rheumatoid Factor. The CBC and profile came back immediately, everything was normal. The Lymes and RF also came back negative, and the X-rays were clear. Over the next few days, the swelling and bruising got worse, so I took her back in on that Wednesday, and our Pedi did a phone consult with Dr. Higgins, a Rheumatologist at Nationwide Children's here in Columbus. She suggested we run a ESR (Erythrocyte Sedimentation Rate). This test for inflammation in the blood stream, which indicates inflammation somewhere, even when you can't see it. This came back very high, and we started on Naproxen (Aleve) immediately and set up a consult with Dr. Higgins two weeks later. She also had us run an ANA (Antinuclear antibodies) which came back positive. That means Megan is at risk for several types of autoimmune diseases, and puts her at higher risk of uveitis.
Megan had zero range of motion in her left wrist, limited ROM in her right wrist, zero ROM in her left ankle, plus had two swollen fingers and one swollen toe. One week later, her left knee swelled up over night and that's the first time I absolutely lost it over this. I carried her into our bedroom and bawled my eyes out for an hour. This was suddenly very real. Dr. Higgins recommended a round of steroid injections into her affected joints for the following week, and recommended we start on Methotrexate (an immune-suppressant drug that's used for chemo therapy) and Enbrel (a biologic drug). Our insurance approved the joint injections, but none of the meds since Megan "wasn't old enough to have JIA". We started the MTX anyway and just paid out of pocket (it's not expensive). It SUCKED giving her shots every week at home, but we wanted to get started with something ASAP. The joint injections were miracle workers. The swelling went down within a week in her wrists and within two weeks in her knee and ankles. She started walking just before Christmas last year, and it was the BEST GIFT EVER! Two weeks after she started walking, her ankles swelled again. We were told to continue on the MTX for at least 12 weeks before we decided it wasn't working anymore. I was devastated. The joint injections had worked so well right away, and were supposed to provide relief for 6-12 months, not 6 weeks! Around the end of January, we hit 10 weeks of failed MTX and Dr. Higgins did an appeal for the Enbrel and our insurance company finally approved it. We started the Enbrel just before her 2nd birthday and it also worked right away. She was in good shape from February to April, when all the swelling came back in her ankles and knee with a vengeance.
At that point, we determined that the Enbrel was not working any more and started the process of requesting another drug from the insurance company. We asked for Orencia, and they declined. They suggested Actemra, then took over a month to approve their own suggestion. We went from April to August on NOTHING (besides MTX which we knew wasn't working). She was swollen and in pain every single day and night. I was giving her Naproxen and Tylenol to the max, then we got bad labs back in May….the drugs were damaging her kidneys and liver…..wonderful. So we dropped the pain meds (Naproxen), much to my dismay and just started giving her ridiculous amounts of Tylenol to get by. It was the worst summer of my life. Finally in August, the insurance company approved the Actemra, and that's what we're on now (with MTX….they keep that on board because it helps the body to not reject the biologic drugs). Knock on wood, it's been our miracle drug. She's pain free, running, climbing stairs, playing, etc. She's finally sleeping through the night and we haven't done Tylenol in over two months!
It's a roller coaster, and I'm just waiting for the next loop….it always comes.
So, at this point, we do methotrexate weekly at home (we just started giving it orally instead of injections….yahoo!), Actemra via IV infusion in the hospital once a month, and Eye checks every three months. Megan has polyarticular JIA (so many joints, both wrists, both knees now, both ankles, fingers, toes, and possibly neck) and ANA positive, so she's at VERY high risk for uveitis. We see the Rheumatologist every 3 months if all is well, much more often if we are having issues. For the first time in over a year, I'm feeling okay with all of this. She's doing well, she's feeling well, but I KNOW that can change in an instant. It's been a rough year, but I've found support online and our friends and family have been wonderful.
I hope our story helps you understand some of the process. It's very important to find a Rheumatologist who is going to be aggressive with your child’s treatment. The longer they go in pain and with swelling, the more likely it is that permanent damage is being done. From April to August of this year, we were constantly swollen and painful, but luckily, X-rays showed no damage to her baby joints. I'm thankful we found this so early and so quickly, but it stinks that she's not able to have a normal childhood.
Below are some photos of Megan’s first infusion treatment. She’s such a brave, sweet girl.