Treatments

A little sneak peek! :)

We took family pictures last week with Spears' Photography and I had a special request. I wanted Madison to take a picture with a sign that read, "Kids Get Arthritis Too." My goal with this is to spread awareness about JRA. Our photographers, Lloyd and Joleta, have always been so amazing with us and agreed to do this for me without any hesitation. I have gone to them since doing my maternity pictures and every milestone since. I have a very special place for them and their family in my heart. I hope to post the pictures soon!

After Madison's synovial biopsy in May, we learned very quickly that it was going to be a long road. We went for a follow up visit to her rheumatologist, Dr. Johnson, on Madison's 2nd birthday. In order to make her birthday fun, we went to the zoo before. It was so hard taking her there because she still could not walk due to her surgery, but she wanted to go everywhere on her own. Little did I know, that would not be the worst of my problems that day.

At Dr. Johnson's office, we learned that in addition to the Naproxen taken orally twice daily she was already taking, she would also need to take Methotrexate and Folic Acid. Since she was so little, the Methotrexate could not be given to her in pill form. We had the option of a weekly injection or orally. I immediately opted for orally, but after going over the harsh side effects of being given orally, we decided that we would do an injection shot every week to keep Madison as comfortable as possible. I was a mess. I did not know what to think. I blamed myself for the longest time that her JRA was my fault because I didn't get it checked sooner, even though I took her as soon as I saw the symptoms. The surgeon had pointed out that the rice bodies indicated that they had been in her knee for quite some time. How could I not blame myself for not seeing it sooner? Since then, I have looked past that and opted to give the best care for Madison given what we had.

When Madison started on Naproxen, her little stomach could not handle it. She would vomit for any little thing whether it was crying too hard, laughing too hard, running around for too long, anything. It has gotten better since, but she still has to be super careful on how much activity she gets because it will make her sick to her stomach. I brought this up to the doctor and he decided to lower her intake to one time a day. This has helped tremendously as far as stomach problems. I thank God that Madison is such a strong, little girl because she takes her Naproxen and Folic Acid pill daily without complaining. It has already become routine for her.

Her first Methotrexate shot was horrible, they still are and I don't see them getting any better. It is so hard giving them to her because she does not understand what it is for. I have tried talking to her beforehand and telling her we are going to do it, but it seems to upset her even more because of the anticipation. The worst part about her shot is that I have to hold her down. She just screams, "Please don't, please don't" over and over and it makes me cry because I never want to see her in that pain, yet alone be the one to have to do that to her. I just have to remind myself that it is for her benefit. It has helped her tremendously and that fact alone gets me through it. Before Methotrexate, Madison had a very significant limp. She no longer has such a significant one, it is barely noticeable so we are making progress!

But don't get me wrong, Methotrexate is a very scary drug. It is used to treat cancer patients. In the low dose that Madison is getting, it just helps with inflammation and pain management. When they first warned us that she might lose her hair and have some damage to her kidneys and liver, I freaked out. Very, very scary, but she gets blood tests (which also suck) done on a regular basis to prevent any damage.

We also go to Physical Therapy once a week. We also see an orthopedist because Madison baby's her left knee so much that it is unable to straighten by itself. But who wouldn't blame her? She is in pain! PT is to get her strength back in her left leg and build it up so she is dependent on that leg as much as her other one. Madison seems to enjoy PT because the clinic loves her and she gets to play lots of fun games. Her orthopedist is Dr. Hoekstra at Carrie Tingley Hospital. He is very good with her. We see him again this month and he will determine if she needs a cast or not to help with the straightening part. Madison's PT doesn't see any need for a cast, so that is very exciting news!

I cannot say enough about Madison. She is the bravest, strongest, happiest, most lovable little girl. She is so smart and I know that she will fight until she WINS.