Sometime in September 2006, I asked Hannah to hold up her hands on our chalk board so I could trace them. To my surprise she could not hold her left hand flat against the board. I tried to gently push her wrist down and was faced with some serious tension. I made a mental note and checked it a few days later with no change. Even checking it at night, while she was in a deep sleep, we were unable to bend her wrist. Any force on our part, caused serious pain. We were stumped and worried.
We saw our doctor who ruled out any kind of injury or break in bones that may have fused together. We were then referred to a pediatric orthopedist, who, upon viewing Hannah's X-Rays, informed us that Hannah's wrist bones were growing at the rate of a 6 year old (she was 3 years old at the time). The condition that causes this? Juvenile Rheumatoid Arthritis. I had heard of Rheumatoid Arthritis in older people, but kids?
We were then referred to a rheumatologist who confirmed her JRA diagnosis in December '06. Hannah was prescribed a non-steroidal anti-inflammatory to be given orally twice a day. For the next several months, this medication 'appeared' to helping. Hannah seemed less swollen and carried on like many other three year olds.
In September '07, Hannah was playing what we call 'dizzy spinny' ( you know, the game where you look up, hold your arms out and spin until your silly dizzy!). Well, inevitably, she got so dizzy she fell into her dollhouse. I was there in a flash to check for injuries and was shocked to see how swollen her right thumb was. I was convinced she somehow broke it. When I bent it though, she didn't seem to be in any pain. And it didn't feel broken. My instinct told me the swelling was probably already there and that this had everything to do with her JRA and nothing to do with 'dizzy spinny'.
I contacted our clinic to rule out any thoughts on injuries. They agreed it was probably JRA related so I contacted our rheumatologist. The nurse from rheumatology was less than helpful informing me that the rheumatologist 'doesn't see patients for acute wounds'. Despite my attempt to explain that this wasn't an injury but rather a flare up with her JRA, we booked an appointment to see our doctor to jump through the hoops of an examination and X-Rays to rule out any injuries. Upon examining, our doctor discovered that not only was Hannah's right thumb swollen, but her left big toe as well.
This doctor questioned me fairly hard about why we weren't seeing a pediatric specialist at a tertiary intervention clinic. Honestly, up until that point, it seemed like things were going well and I rarely questioned doctors, so I just assumed we were doing what was best. I have since changed my timid approach on medical professionals!
By October '07, we found a new team of specialists to handle our case, down at Children's Hospital Boston. These doctors only handle JRA patients, seeing 3,000 per year. Children's Hospital is also a teaching hospital so there's always 'fresh residents' who are eager to learn through thorough examinations.
Upon Hannah's examination, the resident noted her left wrist, left elbow, left big toe and right thumb. Four joints! In less than a year of being diagnosed, we went from one joint to four! This level of JRA is called pauciarticular. They prescribed Hannah a new medicine called Methotrexate, given once a week.
We stopped the non-steroidal anti-inflammatory and started methotrexate immediately. The thing with Methotrexate is, it takes about six weeks to work in the body. During this time we saw some serious swelling and stiffness in Hannah's body. Not just the aforementioned joints but in her body as a whole. She was slower to get down stairs, climb into the car or even onto the couch. Week 5 on Methotrexate, things started to turn around and she moved easier and the swelling was decreasing.
Our follow up appointment in November went fairly well. Since her body seemed to be tolerating this new med, they increased the dose and also prescribed Physical Therapy and Occupational Therapy.
We started P.T. twice weekly in December. It was amazing to have the therapist point out the differences in Hannah's wrists. Hannah's left arm is slightly shorter than her right. Her left wrist is far less developed in terms of muscles and tendons and is smaller in general than her right. She is also noted to have benign hyper mobility, her ability to flex her joints is extreme. In particular her left fingers because she has been overcompensating for so long. We also started O.T. weekly. It's been a lot of driving and Parker has been less than excited to be in the car so much!
We were excited for our follow up appointment in January since the medicine and therapies seemed to be making up for lost time. Hannah's range of motion was improving, the swelling seemed better and we were feeling really good about things. As most of you know by now, the appointment was far from what we expected.
While the specialists were pleased with Hannah's progress, they made it very clear that she was not progressing fast enough. Hannah's X-Rays revealed joint damage and accelerated growth in her right thumb (consistent with her left wrist). Children have an amazing opportunity to re-grow and/or heal such damage. The window of opportunity is now. The next several months are crucial in getting Hannah into 100% remission. Without remission her bones will continue to grow at an accelerated rate causing her growth plates to close permanently.
Methotrexate, alone, will give Hannah a 30% chance of remission. The addition of a new drug called Enbrel will increase those chances to 70%. Enbrel is a biologic drug that slows and/or stops the production of TNF, a chemical Hannah's body produces too much of, so her body attacks itself, hence the label of 'autoimmune disease'.
The drawback to this medication is the form in which it comes.....an injection. Hannah isn't a fan of needles (what kid is, right?). This wasn't going to be easy. I mean, how do you explain to your child that you're going to inflict pain but it's supposed to be helping your body? And are you ready for this? I am the lucky one to administer the weekly shot. sigh.
Thanks for sticking out this looooong post!
