Braydin’s Story

One of most parents biggest fears is something happening to their children and there is nothing that they can do about it. Well that fear has come true with my son. You see my son is almost five years old and looking at him from and outsiders view point you would think that he was perfectly healthy. However, what you don’t see is that he suffers from Juvenile Idiopathic Arthritis. Yes, that’s right kids get arthritis too. Did you know that? Because I definitely didn’t until my son was diagnosed with it at the age of one. Whenever I tell people that my son was diagnosed at the age of one with rheumatoid arthritis they typically have the same question: How did you figure out that he had arthritis? So let me just tell you our story.

Braydin hadn’t started walking yet whenever he was one years old. A lot of people made the comments of give him time kids learn at their own pace you know all of those things. Well Braydin was about 15 months old and still not walking. At this point in time he was in daycare and his amazing daycare teacher at the time was trying to help us with getting him to walk. On August 3, 2016 he was at daycare walking behind a wagon and fell. The daycare teacher iced it and immediately informed me about it and was keeping an eye on it. She sent me pictures saying it looked swollen.

Pictures of his legs on Aug. 3, 2016

I took him home and gave him ibuprofen and was hoping the swelling would go down. It never did. He was finally able to get into see his pediatrician on August 16, 2016 and had x-rays taken. The pediatrician thought it was a possible dislocated patella with how swollen it was. He then saw an orthopedic surgeon the next day and they said probably just a sprain based off the x-ray images and we followed up with him in a week. At that time we had more x-rays but it was still swollen and we were referred to a pediatric orthopedic in OKC at OU Children’s Hospital. We had our first appointment with them on September 7, 2016. They reviewed his records and referred us to rheumatology with the suspicions that it was arthritis. We finally were able to see the rheumatologist September 23, 2016. Just in case you all didn’t know Oklahoma only had 2 rheumatologist in the state at this time so there was typically a long wait time for appointments. That is when we were given the diagnosis of Pauciarticular Juvenile Rheumatoid Arthritis. He had his first set of injections given to him on October 6, 2016 and things went back to somewhat normal. We’ve been battling flare ups since then.

He’s been in remission a few times but then he has a flare up and we are back to battling it. He had a flare and had to get injections again on January 26, 2018. He was on methotrexate for a little over year and then was taken off of it after no flare ups. He was off of it for a year as of last month March 2020. On Tuesday March 14, 2020 I got the dreaded news that he would be getting back on it though. His left leg is not doing well and we have to treat it aggressively or there is a possibility that his right leg will grow longer than his left leg. In the past when Braydin was on methotrexate it was given to him orally in apple juice or some other drink. This time though the new rheumatologist would like for it to be injections. I had to take him to get blood work done on April 21, 2020. He cried so much they had to take 2 syringes full of blood because there were so many test that they have to run to make sure his little body can be on the medicine again.

If you google Methotrexate this is the information that comes up:

Methotrexate is used to treat certain types of cancer of the breast, skin, head and neck, or lung. It’s also used to treat psoriasis, rheumatoid arthritis, including polyarticular juvenile idiopathic arthritis.
The more common side effects of methotrexate can include:

Braydin has been on this medicine before and it was scary beforehand, but now I have to give it to him again and not only do I have to come to terms that he is on this medicine again but as his mother I will also be having to give him shots once a week. I have cried so many times since finding out last week that I was going to have to give him shots weekly. He’s only four almost five in a month but he understands that this medicine will make him feel better but he is still going to be scared. Heck I’m scared and I’m not the one getting the shot! As a parent this is one of the hardest things that I have had to deal with knowing that the only thing I can do to help him get better is giving him a shot once a week. I’m going to suck it up and put on my mom face on and pretend like I’m not scared, but truthfully it is killing me knowing that I’m going to be causing him pain. Please keep us in your thoughts and prays as we are about to start this journey. I’m not sure what day we will be starting it but as soon as the rheumatologist gets the blood work results she will be calling in the new methotrexate orders for us.

This was a long post and I appreciate it if you’ve made it this far. The Arthritis Foundation of Oklahoma is doing a virtual Walk for the Cure May 16, 2020. I have started a team for Braydin called “Braydin’s Brawlers”. If you can donate so that there can be more research done it would be greatly appreciated. If you can’t donate please share my link or post and get the information out to others. We need a cure for arthritis. Nearly 300,000 kids in the USA have arthritis and my kid happens to be one of them. Please help us so that maybe one day Braydin can play with his friends on the weekends rather than recuperating from having his shot given to him on Friday after school so he will be okay to go back to school on Monday.

Update 02/15/2025

Since my last post, Braydin has faced many medical challenges related to his juvenile idiopathic arthritis (JIA). He was on oral Methotrexate for about a year and then entered medicated remission. We reduced his Methotrexate, and he remained in remission for about another year. However, during his one-year checkup, inflammation was detected again. At that point, we had to start administering injections for him at just three years old.

I don’t know how many of you have had to give a three-year-old a weekly shot, but it was an incredibly difficult experience. There were many tears—both his and mine. Honestly, I think I cried more than he did. When we started the injections, I promised myself I would never administer them without his permission. For a while, we managed by distracting him with a tablet or other activities during the injections, which helped ease his anxiety and pain. Unfortunately, this stopped working after he visited a family member who forcibly held him down for an injection. After that incident, Braydin began throwing up after his injections, and his anxiety about them skyrocketed.

As if that wasn’t enough, we encountered a severe flare-up that left him unable to walk, requiring the use of a wheelchair. His treatment plan was adjusted to include both Methotrexate and Humira, with the former administered weekly and the latter bi-weekly. However, after some time, he began experiencing psychotic episodes, eventually leading to a diagnosis of schizoaffective bipolar disorder following an inpatient stay. At just seven years old, he shared that voices in his head were telling him to harm himself. It was one of the most terrifying moments of our lives. After removing Humira from his treatment, these symptoms stopped completely, confirming that the medication had caused the psychotic episodes.

We then transitioned to Xeljanz, an oral medication, hoping it would be an effective alternative to injections. Unfortunately, it did not provide the level of relief he needed. As a result, we switched back to Methotrexate and introduced Actemra, with Methotrexate administered weekly and Actemra bi-weekly. However, the Methotrexate caused severe stomach pain and nausea, ultimately damaging his stomach. He will likely need to take antacids for the rest of his life. Given these side effects, his rheumatologist has now decided to try getting him approved for weekly Actemra treatments, which have been particularly beneficial for him.

In addition to his medication regimen, Braydin has been attending physical therapy twice a week for the past two to three years. I want to give a huge shout-out to the wonderful team at Cleveland Area Hospital, who have worked tirelessly to help him regain his strength. He began with aquatic therapy before progressing to floor therapy and now focuses on strength training to build muscle in his hips. Though he still walks with a limp, his contracture is nearly gone. He can now walk and even run almost like a typical child. He does, however, feel like one leg is longer than the other because the muscle in that leg does not fully extend.

There are many days when we struggle with the reality of his condition, feeling overwhelmed by the challenges we’ve been dealt. But despite it all, we are doing our best to push forward and spread awareness about this autoimmune disease. Our journey has been incredibly tough, but Braydin continues to fight with resilience and strength. We remain hopeful for better days ahead.