Our Daughter’s name is Hannah. As of this writing, she is 8 years old.
For the last 8 years, our daughter lived a normal life … she is currently in the 3rd grade, she has friends, she goes to church, plays, fights and wrestles with her younger sister and is a purple belt in Karate.
Over the last couple months, from time-to-time she would complain that her ankles were hurting. She wasn’t always the most athletic child, so we just brushed it off as over exhaustion or growing pains. Most of the complaints came during Karate, so we just assumed that she didn’t want to participate in that particular exercise.
But one day when she was getting dressed for bed, we noticed that she had a mild rash on the back of both legs. She spent the day playing outside with her sister. Allergies are prevalent on her mothers’ side of the family, so her mother and I just assumed that she must be having a mild allergic reaction to something outside.
The good news was that the rash was gone the next morning and we sent her to school.
It may have been a day or two later, we noticed that the rash had returned on the back of her legs. Then it was gone the next morning so we sent her back to school again.
This continued for several days, but noticed that by the time Hannah returned from school, she would come home with the rash AND a mild fever.
Sunday, September 29, 2013
Hannah develops a unexplained rash that began in the afternoon, we treat it with Benadryl with no help. On Tuesday, October 1st we take Hannah to her family doctor to see if they can help. At that time we tried a low dose of prednisone. We schedule a visit to an allergist.
Sunday, October 6, 2013
Hannah continues developing the rash and is cold all the time, that evening after church choir she comes home and her hands are scrunched up in pain and she is walking very stiff.
She returns to school but begins complaining of pain soon after lunch, we have been going and picking her up when that begins. She comes home takes some Tylenol and rests the rest of the day. The next morning everything is back to normal and she is her perky little self.
We return to the doctor on Tuesday, October 9th they draw blood and do a strep test to begin ruling out things. While they are trying to draw blood the nurses witness the onset of her rash and the mild fever at the time. They realize there is more going on. Strep was ruled out
Sunday, October 13, 2013
Allergist and family doctor see something in her blood work that makes them call Children’s Mercy Rheumatology department. They are able to get us in on Wednesday, October 16th to see Dr. Elizabeth Kessler, she orders blood work, and X-rays of all of Hannah’s joints. At the end of the visit we had a diagnosis, Hannah’s symptoms were textbook for Systemic Juvenile idiopathic Arthritis. They started her on prednisone again to see if we could control the symptoms. During this week we were also running very high fevers 101 – 103 when the rash and pain came on. Which if not treated in Systemic JIA patients can lead to possible liver damage. By Friday, October 18th we were still not able to get her fevers under control and Dr. Kessler thought it would be in our best interest to admit Hannah into Children’s Mercy Hospital. When we arrived they began giving her one of three high doses of prednisone before beginning any other treatment. On Monday, October 20th they gave Hannah her first infusion of maybe many