"Caroline in her first ever Target Ad!""

Welcome to my Web Page. I was born on January 31st, 2002. In November of 2003 I woke up with my right knee swollen to the size of a baseball. After six + weeks of swelling and numerous doctors, our pediatrician, Dr. Smidt, thought I might have Juvenile Rheumatoid Arthritis (JRA). I first went to an infectious disease specialist, who felt it probably was JRA, but she sent us to a pediatric rheumatologist, Dr. Akin, who confirmed the diagnosis. Soon after my initial left knee, my right knee and my elbows became inflamed. My ankles, jaw, and neck followed shortly after. I have been classified as having Polyarticular JRA which in layman’s terms means “many joints”. I hurt almost all the time, but I try to be a normal kid like all of my friends. I have to take lots of breaks and I spend a lot of time at the doctors and in the hospital, but overall I am a pretty happy kid!

We started treatment with a mild NSAID (non-steroidal anti inflammatory drug) called naproxen (similar to Aleve) and the steroid Prednisone. After two weeks on the medicine my liver became so inflamed they thought I might need a liver transplant. I was immediately taken off Naproxen and put on Vioxx. The same thing happened to my liver again so they determined that I have a liver sensitivity and can’t take any NSAID’s ever. We bumped up my prednisone in the interim. At this point I was so swollen I couldn't walk anymore. Forced to move on, we tried two rounds of joint injections. That involved me being put under and Dr. Akin injecting my joints with artiospan, a steroid. The injections worked for a little while, but they didn’t last too long.

We then decided to try a new medicine called Enbrel. You have to take Methotrexate (a chemo drug) with it so I started the two together. They are both given by injections. I REALLY REALLY don’t like injections. Sunday's are shot days. I try to be brave, but sometimes I am brave and sometimes I'm not. Mommy says I am always brave even when I cry. I also have to take Zantac and Folic Acid to ward off the side effects of those. The Enbrel worked great for my joints, but I kept getting numerous infections. I’ve been taken off and put back on it three different times. The last time I was taken off it was because I got Hand, Foot, and Mouth disease, pneumonia, whooping cough, Influenza B, multiple urinary tract infections, and step all within an eight week period.

At that point in time, Dr. Akin thought something else must be going on with me. So, she sent us to an ENT doctor. Dr. Rimmell at the U of M saw me and said that I have Chronic Sinusitis. In August of 2005 (right after my baby brother Evan was born!), I went into the hospital and had my sinuses tapped and drained, my adenoids out, scoped my esophagus, new PE tubes in (my third set). (I have since had my 4th set of tubes placed, my adenoids removed AGAIN, sinuses tapped, and tonsils out) I got to have a PICC line in for daily antibiotics.

After my PICC line came out we thought we were on the road to recovery so we restarted Enbrel. However, I started getting more UTI’s. So, we (Dr. Akin, Dr. Rimmell, and Dr. Smidt) all decided to start me on a prophylaxis treatment of Amoxicillin and Nasonex. Again, that worked for awhile until my eyes started getting out of control (more on that later) and my joints started losing it.

So, we started IVIG treatments. My first treatment was February 27th 2006. The treatment went really well, but I had a terrible reaction. Vomiting and headaches – nothing fun. We decided to switch to Remicade because of the bad side effects from IVIG. My first treatment went great, but my second one didn't go so well. We did two more treatments only to discover that they really weren't doing anything. Plus, I was breaking out in hives during the infusion so we all decided it was time to stop the Remicade. However - we had to still try to keep the swelling at bay so I am back on 20mg/ daily of Prednisone. However, we knew we couldn't stay on that forever, so we decided to give Remicade another try. We did montly Remicade infusions for a year before I developed an allergy to it and had to stop. I am now taking Humira, a once weekly PAINFUL injection.

Now for my eyes…. I have a related JRA eye disease called Uveitis, which is basically inflammation of the uvea or iris. I essentially get “floaters” in my eyes and if left untreated or not controlled, I could go blind. I currently have a catarat in my right eye and the beginning stages of glaucoma in both eyes. I see my eye doctor, Dr. Bothun every three to four weeks. I get the steroid eye drop, pred forte, 6 times a day in each eye to control the inflammation. I also take cyclosporine orally to help control my eyes too. Dr. Bothun says I have a very stubborn case of Uveitis (of course!) as it has never been controlled. In the past two years we have had lots of ups and downs, but I am lucky to not have my vision compromised yet. Unfortunanely my eyes have been flaring for the past two months. We have not been able to get them calmed down so we have added Cellcept to my daily medicines. I am also starting steroid injections into my eyes every three months to try to prevent further damage.

Most recently Dr. Smidt sent me to see Dr. Hutchinson a pediatric urologist for my frequent UTI’s. Dr. Hutchinson said that I have Vesicoureteral reflux (VUR). He switched my anti-biotic from amoxicillin to sulfatrim and we are slated to go to the incontinence clinic for a follow up soon.. However we learned that I can't take any sulfa medicines with Methotrexate so I am now taking Ceftin. I continue to struggle with UTI's, but hopefully I will outgrow them soon! I have also become a little anemic so I take 1mg Folic Acid tablets daily. This is my first pill and I am so proud of myself for swallowing them!!

So that is my story in a nutshell…My mommy and daddy have created this page to allow all of you to follow my progress. Come back often and thanks so much for keeping me in your prayers!



Kids Get Arthritis Too Magnets and Bracelets

Journal

Wednesday, June 4, 2008 11:31 PM CDT

Hello everyone.... I just thought I would let you know that we have started a blog and I am trying to keep that updated on Caroline's progress...

Please check it out at www.theprankechronicles.blogspot.com

God Bless!

Read Journal History

Hospital Information:

Gillette Children's Specialty Healthcare
200 East University Ave
St. Paul, MN55101
651-291-2848

Links:

E-mail Author: aliaalan@aol.com

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