John's Arthritis

As you all know, we've recently discovered John has JRA -- juvenile rheumatoid arthrits. We have a rheumatologist we visit every couple months (or more often if needed) down at Riley Children's Hospital. I've gotten a TON of questions on what all is going on with him, so I figured I'd start from the beginning ...

Back in June, John had ... let's call it an episode ... where he began limping. I talked to his pediatrician who said to "watch him" over the weekend and bring him in that Monday if it didn't go away. His limp didn't go away. In fact he got to the point that he literally could not stand up straight or walk. Any time he'd try to run after something, he'd fall and sit there holding his knees while he cried "Mama, it hurts. It hurts!"

Over the next three weeks, we saw three different pediatricians and made a couple trips to the emergency room. Blood work and x-rays were done. John's regular pediatrician sent us down to a pediatric orthopedist at Riley Children's Hospital who diagnosed John with "synovitis" which is basically just an inflammation of a membrane or the fluid around a joint. He thought John had it in his hip and said it would go away within 4-6wks and not to worry. We headed home with hopeful spirits, and in about two weeks all of John's symptoms disappeared. He could walk, run, and play just like any other normal 2yr old.

Less than a month later, he started that same limp again. I immediately touched base with his pediatrician and the pediatric orthopedist to find out what we needed to do next. He was seen right away by his pediatrician, and we were sent to Riley Children's Hospital again ... this time to see a pediatric rheumatologist. Right before we went down to Riley, John had another really bad episode that was worse than the first. We took him to the ER, and they put him on a steroid as an anti-inflammatory. Unfortunately, the steroid masked anything the rheumatologist could have seen, which put us one step behind on treatment and diagnosis. The rheumatologist (Dr. Chira) started John on ibuprofen three times each day to see if that would help the inflammation, rather than the steroid. He also referred us to a pediatric ophthalmologist down at Riley because juvenile arthritis can also affect the eyes. (Thankfully, John's eye exam was perfectly normal, although he does have to be seen by the ophthalmologist every 3mo.)

The ibuprofen seemed to help for a couple weeks, but then John began to continually complain of pain in his knees again. Another call to Dr. Chira (this was early October), and Tylenol was added to John's daily meds. He was then taking ibuprofen three times each day and Tylenol in between each dose. As you can imagine, getting a toddler to take a minimum of six doses of meds every day was a challenge. On top of the medicine fights, John had other symptoms that would come and go -- high fevers, head-to-toe rash, slight limping, severe pain, vomiting, swelling, and uncontrollable shaking/chills.

His last "flare" as it's called with the arthritis (about a week ago) had him in so much pain that he could not walk, he spiked a fever of over 102, his knees were so swollen they were the size of softballs, and he shook so hard you would have thought he was having a mild seizure. The crazy thing was that it disappeared as fast as it hit. Friday morning he was fine and dandy, Friday evening the flare hit, it lasted through the night, and come Saturday evening you never would have thought anything had happened!

I called Dr. Chira first thing Monday morning, and he wanted to see us that week (Wednesday was the earliest they could get us in). We made another trek down to Indianapolis, and of course by then all of John's symptoms were gone and the doctor again could see very little. He did notice that John refuses to straighten his legs all the way, even when he's walking/running, and that John turns his toes slightly inward when he walks/runs. Dr. Chira referred us to have an MRI done on John's knees to find out exactly what is going on in there, and he also wants John evaluated and seen by a pediatric physical therapist.

Dr. Chira took John off the ibuprofen and put him on the generic version of mobic for the inflammation. It's WAY easier for him because it's just once each day rather than three times each day. He's also on a stomach protectant that was prescribed to him a couple weeks ago because the mobic can cause severe upset stomach. Dr. Chira said John can continue to have tylenol as needed for pain management, but even that he hasn't needed nearly as often as he did before.

The pediatric physical therapist has a 3-4mo wait list right now, but I am working on getting him into Indiana's First Steps program. They will get his primary evaluation done and start his plan of action for therapy, and hopefully by the time he's three (since First Steps only goes up to age 3), John's name will be up on the wait list for the physical therapist. (Jake is also going to be seen by the First Steps program for his leg/foot, too, but that's another story lol) We're still trying to get the details ironed out for John's MRI -- it's not easy to find a place that accepts our insurance AND will do an MRI under sedation (he has to be sedated for it because he's so little and would never hold still, especially his legs). Hopefully that falls into place very soon.

Once John has his MRI done, Dr. Chira will be putting him on a much stronger medicine to try to put the RA into remission and hopefully avoid bone/joint damage for as long as possible. This does not mean he won't be in pain, but hopefully Tylenol will manage that for him. The stronger medicine can have some pretty severe side effects, and we will have to get John's liver checked every couple months.

JRA (juvenile rheumatoid arthritis) is not the most pleasant of diagnosis, but I keep reminding myself that it could be worse. John will have to deal with this for the rest of his life, but hopefully his doctor(s) will be able to find the right combination of medicines and rehabilitation that will slow it down so it doesn't affect him horribly. It's not something that he will "grow out of" or just go away on its own. There is no cure for it, but doctors have come very far with treatment for it. We hope and pray that we are able to keep John on a normal path for a very long time and that he is not hindered or stopped from doing things he loves. This journey will be a long one, but we'll hold his little hand every single step of the way. Keep him in your thoughts and prayers, and hope his journey with JRA isn't especially difficult for him.