Monday, January 12, 2009

Abby's Diagnosis

At the beginning of the summer of 2008, we noticed that Abby would "walk funny" from time to time. We couldn't really put our fingers on exactly what she was doing but we knew that it wasn't right. She would only do it for a day or two and would be fine for a few weeks and then she would do it again. We kind of dismissed it as just her messing around and we weren't really too concerned. We had mentioned to the doctor before that she walked on her toes alot and that she seemed to fall down more than she should and for no apparent reason, but the doctor wasn't really concerned so we weren't either. I mean nobody wants to think that there is something wrong, so if the doctor wasn't, we were not going to worry either.

Then in late August she started limping in the mornings for about an hour or so and then she was fine. This started to concern us so we turned to the internet and read about JRA. We jokingly said to each other, " I think Abby has arthritis." We kind of chuckled and thought leave it to Abby to come up with this one. I don't think either one of us really believed it, but we took her to her pediatrician anyway. She didn't seem overly concerned but she mentioned JRA and said we should have bloodwork done and no matter what the results we should go see a Pediatric Rheumatologist to have her examined. We took her for the bloodwork the next day and as we walked up to Wolfson's Children's Hospital I started to feel sick. I was thinking that this just cannot be happening to us. Abby has always been a go getter and to think that she could have something like this just brought me to tears. While we waited for the results her doctor told us to give her Motrin to treat the symptoms for now and so that is what we did.

About 4-5 days later I called her doctor to see if we could give her more Motrin because her limp was not getting any better. She told me to increase her dose and that her lab results had come back in. It wasn't the news that we were hoping for. Abby had a high SED rate which indicates inflammation and we needed to go see the Rheumatologist ASAP. She referred us to a local doctor and we got an appointment 3 weeks later. During those weeks Abby continued to get worse and seemed to start having pain with it. Her ankle was swelling and was warm to touch, but she still only had her symptoms first thing in the morning and after nap.

At our appointment the doctor confirmed the diagnosis and prescribed physical therapy, Naproxen and Zantac, and gave us a referral to the opthamologist. Over the next few months we began her therapy, gave her the medicines, and watched her continue to decline. There were days when she would just drag her leg behind her and when she did use the leg she turned her foot out and her symptoms gradually got to the point where they lasted all day long. She also started to complain about her foot hurting on a daily basis.

At this point we decided to get a second opinion so we went to The University of Florida and saw a wonderful Pediatric Rheumatologist. She seemed very optimistic for Abby and increased her dose of Naproxen and during a later visit switched her to Methotrexate, which is actually a chemotherapy drug. She also informed us that Abby is a high risk for developing the eye inflammation associated with JRA so she will need to see an Opthamologist every 3 months for the next four years no matter if she goes into remission or not.

Currently it seems that the Methotrexate might be working. She had a good physical therapy session today and seems to have more range of motion. We do not know what the future holds for our precious angel but we are hopeful that she will be able to do everything in life that she wants to do and we will all be right there supporting her. Despite this disease she just keeps on trucking and brings joy to our lives everyday with her beautiful smile.

Sunday, January 11, 2009

The "First Timer" Post

Like many blogs before us, we felt this to be the easiest way to update friends and family of Abby's condition and, hopefully, her progress.

Abby has Juvenile Rheumatoid Arthritis (JRA) affecting primarily her left ankle.

What is JRA you may ask? JRA is the most common form of arthritis in children. It may be a mild condition that causes few problems over time, but it can be much more persistent and cause joint and tissue damage in other children. JRA can produce serious complications in more severe cases.

Arthritis is best described by four major changes in the joints that may develop. The most common features of JRA are: joint inflammation, joint contracture (stiff, bent joint), joint damage and/or alteration or change in growth. Other symptoms include joint stiffness following rest or decreased activity level (also referred to morning stiffness or gelling), and weakness in muscles and other soft tissues around involved joints.

Abby experiences all of these symptoms. Her ankle swells and gets warm to the touch from the inflamation at times. Due to the ankle pain, she also walks with the foot turned out and her ankle rolled inward. She wears inserts in her shoes to correct this. Her left leg is also longer than her right by a an inch or two.

The signs and symptoms of JRA vary from child to child, and even from day to day in the same child! This is an important fact for parents, caretakers and teachers (especially gym teachers) to keep in mind when working with children who have JRA.

There is no single test to diagnose JRA. The diagnosis is made when there has been persistent arthritis in one or more joints for at least 6 weeks after other possible illnesses have been ruled out. Sometimes, a variety of tests may be necessary to come to a firm diagnosis. Once your child's physician suspects or makes this diagnosis, your child may be referred to a pediatric rheumatologist. This is a physician who specializes in the diagnosis and treatment of children with arthritis and arthritis-related conditions.

The type of arthritis is usually determined based on the symptoms a child has had during the first 6 months of the illness.

Abby has been diagnosed with
Pauciarticular Arthritis. This type of JRA affects only a few joints, fewer than 5. The large joints, such as the shoulder, elbow, hip, and knee, are most likely to be affected, for Abby it is her left ankle.

There are two different types of pauciarticular JRA: one type usually affects little girls under age 7 and is associated with the development of eye inflammation (chronic iridocyclitis or uveitis) in about 1/3 of these children. These children should be tested for antinuclear antibodies (ANA). This tells the rheumatologist and the ophthalmologist (eye doctor) whether the child has a higher risk of developing uveitis (when the ANA is positive the risk is higher). Unfortunately, this eye condition is silent so only proper monitoring by an eye doctor who is familiar with this complication of JRA may find the changes in the eyes.

Abby is "ANA Wekly Positive" which means that she must see an opthalmologist every three months to make sure that no eye inflammation is occurring. So far, her opthalmologist has not seen any inflammation.

The second type of pauciarticular JRA usually affects boys who are somewhat older, typically after age 8 and tends to involve the lower spine (sacroiliac joints), hips, knees, ankles and tendons.

Treatment usually involves a combination of physical therapy, medication, exercise, healthy eating habits, eye care, etc. Abby's treatment currently involves medication, physical therapy, and eye care. Abbyschedule is a s follows:
  • Physical Therapy - one day a week for 30 minutes.
  • Methotrexate - 7.5mg once a week.
  • Prevacid - in the mornings daily.
  • Zantac - in the evenings daily.
  • Celebrex - twice daily.
  • And of course lots of love from mom, dad, and Ethan.
I know this has been a long winded post, so I will end here and save how Abby was diagnosed for another post. Untill next time....