ARTHRITIS?? Seriously? How can my 11 year old son possibly have a disease that affects the elderly?
We were given this diagnosis for my son, Logan, just 1 1/2 years ago. Logan was a regular active kid who loved sports and school. Day one of our family vacation and he complained his ankle hurt. Within 1 hour the pain was so bad, I had to piggy back him back to the hotel. This pain kept up the entire vacation. When we got home, he was treated for a sprained ankle. Soon, his feet started hurting. He nicknamed it “sensitive foot syndrome.” We could not go near his feet. We laughed about it at the time. Now, the doctor treated him for low arches. He said buying arch supports should help the pain. It didn’t go away, but there wasn’t much else the podiatrist could do. One month or so later, the pediatrician discovered a huge, swollen knee. Logan had never even complained of this. It was on the same side of his body as the sore ankle. We started seeing an orthopedic surgeon. He drained Logan’s knee a few times. However, the swelling would come right back. We mentioned the sore ankle and feet. He said it was due to the sore knee. So, he soon recommended knee surgery. It was an “easy procedure” to clean the knee out and he would be playing again “in a few days!” Well, 8 weeks later, he was still walking on crutches and his knee was still swollen. The doctor actually recommended going back to draining or a compression stocking! Seriously?? Nice try buddy! We decided to find answers somewhere else!
We got in at U of M 2 weeks later. The doctors knew right away he had arthritis. The Rheumatologist could feel every joint and tell if there was arthritis and how severe it was! He was diagnosed with juvenile polyarticular arthritis. This type spreads to 5 or more joints in a 6 month period. It was 6 months since the day on the beach! So, by now it was in his hands, feet, ankles, toes, fingers and knees! Ok, we can deal with that. At least we have the diagnosis now. We felt better. Well, until word of the medicines he had to take set in. At one point I think he was on about 15 pills a day. The high doses of steroids caused him to balloon up right in the fall of 6th grade! The side effects are scary! The emotional roller coaster they have put my child on is crazy!
So, enter multi-personality mommy!
*Guilty Mommy: The part of me that wonders everyday what I could have done to prevent my child from getting this. They say it is an autoimmune disease. Kids that have these diseases are born with a clink in their immune system. So, it’s just a matter of time until that clink gets rattled and it sets the disease off. Could I have prevented it? Was it his food, microwave, stress, activities? What did I do wrong? How did I fail my son?
Guilty mommy always feels bad for my other child who watches Logan get all the special treatment.
*Angry Mommy: I’m so mad at the disease and everything that goes with it! I get so mad about people’s responses. When he isn’t having a flare up, he can play sports. Everyone assumes he is fine. They don’t see perhaps the bad morning where he couldn’t even walk down the stairs or tie his shoe without any pain. They have no idea of all the meds he takes in order to feel good. When he is having a flare up and in a wheelchair, people stare as he still looks like a normal kid. I know people want to help, but don’t tell me “it’s going to be ok.” Nobody knows if he will be ok. There is NO CURE for this disease!
*Sad Mommy: I cry a lot. I cried almost every day the first year. I watch my child struggle to run and catch up with his friends. Let’s be honest, boys are boys. They don’t understand and can’t slow down. So, I often watched my child just sit on the side or lag behind. Logan has to get a shot of methotrexate every week. I have to give it to him. He begs me every week not to do it. He throws up just at the sight or talk of it! I have to stand there with that syringe and wait for him to stop throwing up to give him his injection. It is heartbreaking!
*Scared Mommy: THE MEDS!! The meds are so scary! Am I doing the right thing by putting all these drugs in him? If I don’t, he may eventually need joint replacement surgery! So, let’s talk about the side effects of his meds. One could cause severe liver damage. So, he gets blood work every 2-4 weeks to make sure his liver is still functioning. Not to mention as he is getting older, the disaster alcohol could cause his liver if mixed with this drug. Then, his eyes. Arthritis and one of his pills can affect the eyes. A double whammy! So, he has to get eye tests every few months and go to a retinal specialist to make sure his eyes stay free of disease. Then there is the methotrexate. Basically, a low dose of chemotherapy. So, over time, it has made him so sick he can’t even stand the sight of the needle or bottle of medicine. So, he sees a therapist to try and retrain his brain to his diversion to this medicine. Oh, I forgot to mention that we also had to have “the talk.” While taking this medication, if he was to get a girl pregnant, the baby would basically be guaranteed to have birth defects. And that is what is going into my baby every week!
*Organized Mommy: He has a 3″ binder filled with paperwork from all his doctor appointments. Juggling appointments with school is very difficult as most offices are only open during school hours. He doesn’t like to miss school. Therefore, almost every day off is spent at one of his doctors. Refills! I have to stay up on his meds. If he misses a couple days in a row, we risk a flare up.
*Happy Mommy: I know, right now you are thinking what could possibly make you happy about this disease. The disease doesn’t make me happy. But every once in a while, we get a glimmer of hope; a moment of pure joy! I had one today at his doctor appointment. Watching the doctor’s face as she felt his joints. She had the look of pure joy and happiness in her eyes! His joints have no signs of active arthritis right now! That is a feeling of pure joy! Tears that came down my face because maybe my son will be that kid who goes in remission and stays in remission! The way is he trying to handle this disease makes me happy as well. He was asked to be the honoree at the Walk for a Cure at the Detroit Zoo on May 10th. Last year it was the largest arthritis walk in the country with over 3,000 people. This year, Logan shared his story at the walk. He has been raising money to find a cure . I am proud of him as he steps out of his comfort zone among adults and his peers. If you would like to learn more about the walk or donate to our team, or participate next year. Click on his link below: here.
I have had a few people ask me if i believe in God after reading my post.
The answer is absolutely! So, let me add this:
Personality: “blessed mommy” ..There has never been one moment that I have questioned God through this ordeal. He has been the one to give me strength. Just when we seem to hit a big low, I have been given a reminder by God that he is still there. One example, the day Logan was questioning God and why he would do this to him. We went outside for a bike ride! This may seem trivial, however, Logan had been unable to bend his knee to ride a bike in over a year! Thank you God! I know God has beg plans for Logan. He is working through him. Logan will make a difference in his life!