My family took a week long trip in Michigan’s Upper Peninsula to do the water fall tour in July of 2016.
We started out doing an over-night in Mackinac City, then over the bridge all the way to Escanaba (because of the movie), then up and over, then back down for a final stop at Michigan Adventure. We got to see where Lake Michigan and Lake Huron meet, the beautiful Lake in the Clouds in the Porcupine Mountains, Lake Superior, Pictured Rocks, so many magnificent waterfalls and so much hiking.
A few days into our trip, Axton started complaining that his legs hurt… that it hurt to walk, that he couldn’t walk. My baby was crying.
Brian and I thought it was typical toddler stuff. We’d be hiking in the heat, or doing things at the camp ground, he was just tired. He would be fine with some rest. Well, it lasted the rest of the week….
And it continued on when we got back home, just not as noticeable.
His right knee was swollen and red. I remember getting a picture of it from my mother-in-law while at work some time in August. I was scared and had no idea what was going on. I made an appointment for him as soon as I could with his pediatrician.
Because of Brian’s work schedule, I went to the appointment with my mother-in-law. It was a Friday afternoon, we were there for hours.
They did regular exams, drew multiple vials of blood, and several x-rays. Axton was screaming and crying, he was scared. Hell, I was scared. Have you ever had to hold your toddler down so a technician could get one decent x-ray? Its heart breaking. People in the waiting area heard him and began to tear up…
Once all the tests were complete, we were ushered back into the exam room. His doctor prepared me for the worst. She threw out that C word that no parent wants to hear and sent us home.
I wanted to cry all weekend.
Fast forward a couple days to Sunday, when there are no doctors in the office…. Dr. O called me Sunday morning as soon as she received Axton’s test results, it wasn’t cancer. But could be arthritis.
Axton was then sent to see a Rheumatoid specialist, where they did more testing and confirmed that he had JRA.
Not only that he had it, but it was in both of his knees and both ankles. After that, we were referred to an eye doctor, for fear that his arthritis would spread and cause him to go blind.
I had no idea children could get arthritis! I felt like such a terrible mother…. What kind of parent couldn’t see that this was more than just aches and pain from hiking?! Did us not knowing make it worse? Could this have been prevented?
I was terrified. By the end of the week, my two year old was seeing multiple specialists and was taking naproxen twice a day every day.
So, lets back up a bit. I’m sure I’ve lost you. Its very emotional for me and I tend to lose myself when it comes to talking about it.
-What is JRA?
JRA is short for Juvenile Rheumatoid Arthritis. Its often referred to as Juvenile Idiopathic arthritis (JIA) and is a type of arthritis that causes inflammation and stiffness in joins for more than six weeks in children age 16 and younger. JRA affects 50,000 children in the US.
JRA is an autoimmune disorder, meaning that the body mistakes its own cells and tissues as foreign and begins to attack itself.
-What causes JRA?
In short, they don’t know. Researches assume its genetic.
-Is there a cure?
No. There is a small chance that children can outgrow this disease, but about half will have lifelong symptoms.
So… I found out that my son’s own body was attacking itself and that he would more than likely have to live with this the rest of his life; at the age of two.
There is no cure, but we can manage it with medication.
A year ago they wanted to put him on Methotrexate, which is a common Immunosuppressive drug/Chemotherapy; after reading about it and its side effects, we came to the conclusion that Axton probably wouldn’t be able to do anything, we rejected it.
He has been on Naproxen the entire time, and has had two joint taps… I’ve had to hold my son, twice, while they put him to sleep so they could drain the inflamed joints, hoping that we wouldn’t have to do this again. His tiny hand going limp in mine undone me.
This past July (2018), he had been flare up free for a couple months. He is considered in “remission” and has been taken off his medication.
I wish I could say that we have a positive outlook, that he doesn’t complain of joint pain and he has out grown it… unfortunately this past week he has been limping a bit and states his right knee hurts on occasion.
Maybe its a growth spurt, maybe its the changing of the weather. We can’t say for certain. We’ve been instructed to watch him and if we notice it isn’t getting better then to make him an appointment as soon as possible and immediately put him back on his medication.
Tomorrow, Friday October 12th 2018, is World Arthritis Day. NOW is the time to find a cure for the 1 in 4 Americans affected with arthritis.
Join me and other’s in raising arthritis awareness. Help us find a cure.
For more information on arthritis, check out these amazing sites: