From the time that he was born, Kinser had always been a pretty healthy kid. I credit that with, 1) just plain luck and, 2) the fact that he never had to go to a daycare (his grandparents watched him while I was at work). So there were never any scary fevers, with trips to the emergency room, or constant reoccurring ear infections. I felt pretty blessed at avoiding all of that.
Sometime in the winter of 2010, I started noticing a change in Kinser. It began with what I thought was his eczema returning. He had a pretty bad case of it when he was about 6 months old, and it was more annoying than anything. Who wants their cute baby all red and bumpy? So, that’s what I thought it was. I think I almost went broke with all the lotions I tried. Months went by and I think my whole family just got used to Kinser’s rashes, which were quite prominent on his face and knees. It didn’t seem like a big deal at the time.
I’m not sure exactly when I started noticing Kinser’s lack of energy. I just remember being incredibly frustrated with him, which still causes me to feel tons of guilt. He spent lots of time lying down on the couch and going anywhere with him became unbearable. If we had to go to the store, he would beg me to park close so he wouldn’t have to walk a long way from the parking lot. And even if I just had to run into a store for a gallon of milk, there was no way he was doing it with me without being in a cart. He always said “Mama, I’m tired” and I was beside myself with what to do.
Kinser had always been a picky eater so I attributed his new lack of energy to a poor diet. Getting him to eat better would take time (and it still is a challenge) so I started him on some vitamins. I’m not sure if they really did help or if I was just imagining they did. And for a while, I think I thought he was on his way to feeling better. This brings us to about spring of 2010 that I decided I would enroll Kinser in karate classes so that he could work on getting exercise and increasing his stamina. Most of the time, he loved it. There were lots of things he should have been able to do, physically, but he couldn’t. I kept noticing he just wasn’t able to keep up with the other kids and, one time, he literally burst into tears and seemed to beg me to take him home.
In June, just before his fourth birthday, I took Kinser to see his pediatrician for his yearly check-up and vaccinations. While we were in the office, I mentioned to her about Kinser’s rashes and total lack of energy. She started examining his rashes a bit more closely, focusing on his face and hands. At one point she left the room and came back what I can only assume was some sort of physician’s desk reference or something. Then, she specifically told me not to panic and that she was going to ask me a series of questions. I can’t remember what exactly she asked me, but she ordered a series of blood tests that we were to get right away. Those tests came back and basically led us to make an appointment with a rheumatologist in Toledo. We were told, at first, it would be three months to get in. But after reviewing his lab results, they called back and we got an appointment for three weeks later. I knew that probably wasn't a good sign.
On Friday, August 6, 2010, we finally got to see the rheumatologist. She diagnosed Kinser with Juvenile Dermatomyositis, which is an INCURABLE autoimmune disease. It was, without a doubt, the worst day of my life. I spent most of the appointment crying as I listened to the doctor explain that my son’s life was in danger and that we were going to have to attack it very aggressively. We were to report to Toledo Children’s Hospital on Monday for three days of steroid infusions. He had to take a ridiculous amount of oral prednisolone (steroids), which were going to make him very puffy. I was also told I would have to give Kinser a shot in the thigh once a week. To say that I felt completely overwhelmed was probably the understatement of the world.
Kinser was very fortunate that he responded to the treatment rather quickly. He did get extremely puffy but our entire family was thrilled when we saw his energy level change to that of a healthy little boy. He’s had some scary moments, but for the most part he was doing really well. Almost all of 2011 was spent with Kinser being able to do many of the things he could never do before. Even just going to the park and kicking a soccer ball around was amazing. The rheumatologist and I set a goal to try weaning him off of the prednisolone by the end of the year.
In January 2012, after weaning him off of the prednisolone, Kinser’s lab results came back with some scary high numbers. Unfortunately, the situation was urgent and he needed to aggressively start back on the steroids. To be honest, I was devastated. He had been doing so well that sometimes I forgot that he was a sick kid. Besides the morning/evening rituals of taking medicines and the weekly shots, we just lived life like normal. He hadn’t had the rashes and he looked/acted like a healthy kid. There was no more being tired and he actually had tons of energy. Now we had to start all over again. He was going to get puffy. What would the kids think at school? Would Kinser notice this time around that he looked different? I dreaded telling my parents because I knew they would worry. We all worry though, and there are times when I’m so mad at this disease I could scream. It’s taken me a long time to talk about Kinser’s illness because I never wanted anyone to feel sorry for him.
Well, I’m over it. There is no cure. We need your help because this disease sucks!
UPDATE: WEDNESDAY, MARCH 21, 2012
Kinser’s lab results are in and his numbers are WAY down! The doctor is being cautious, which I understand, and only wants to decrease the prednisolone 10%. Not the ideal, because he'll stay puffy, but we're back in the right direction again. So, for now, we wait and are patient.
~ Leesa (Kinser's Mama)