Ava is my daughter and living with Polyarticular Juvenile Rheumatoid Arthritis. I hope you enjoy our blog and find it helpful and supportive to other parents and children going through the same ordeal. Together we can make a difference and hopefully bring awareness for this childhood disease.
Ava is consider severe, Ava has it in her fingers, wrist, hands, elbows, hips, knees, ankles, feet, and toes. Ava ia also ANA + meaning she has it in her eyes as well!!
Thursday, October 30, 2014
Summer time is fun for children but for children with JRA or now called JIA it is a bitter sweet for them. The swimming and running playing with other children is fun for them. How ever in New England here in the United States it is a tricky one. This year was the year for a high tick count. I pulled a few off the dog. Every day I checked Ava thinking I was ahead of the game. We were doing good till August. We were in the garden and I noticed at the nap of her neck there was a perfect little circle the size of a pin head that had blood dripping out of it. I first thought to myself she must have gotten stung by a bee or another bug. I was wrong I was looking for the fat ticks that go on the dog. It was a deer tick, sure enough she started to look run down. Pale, tired and flaring we could not figure it out. Her joints were hot to touch and this time it was bad! I was getting nervous all over again, it was the nerves when you don't know what your child has. Her Rheumatologist at Boston Children's Hospital thought well she is over due for her knee injections. We did blood work to get her prepared and sure enough. The Lyme panel came back positive IGG and IGM. IGG means it is recent with in the last 30 days I kept thinking it was that little bug bite and I was correct. I felt horrible as though I let my daughter down. I was so upset as a parent at myself. I know I can't blame myself but I do, it is what we do as parents. Started antibiotics on 9/5/14 for 28 days threw this she was having low grade temps, headaches, the flare was getting worse and worse and very hot to touch. We were all getting concern but took her off the monib (NSAID) and went on prednisone (STEROID) to help with the swelling. Went back to Boston Children's Hospital and redrew her blood she is still positive IGG and IGM. We are now on our second round of antibiotics and we are close to the end of it she is not even better!. We started tapering down the prednisone and she was up all night now with the other knee swollen. Ava just can not catch a break! The medical team told us once finished if not better she will need a pic line in and have to do iv antibiotics for 28 days till she is better. Now the danger with the LYME in children or adults for that matter untreated it can cause heart block and neuro brain damage. Not only now do we have to watch the arthritis spiral out of control but not be aware of certain things. The doctor told us to watch her memory and if she says she is having a headache. JRA is not easy on this little 6 year old just not at all.