Ok, so I am starting our family Wellness page! I will attempt to keep everyone up to speed with everything that we are learning and what we are up to. With all the family needing to know and trying to keep up with the phones calls and who knows what. This will be the easiest way to continue.
What we know. Isabella has JIA(juvenile idiopathic arthritis). She is polyarticular(which means that she has arthritis in more then 5 joints). She also is HLA B27 Positive. This is a huge strike against her for this is rare for a girl, age 4, to have so much sympotoms. HLA B27 is a tissue type tey find in our blood. Many people have this tissue type but only about 10% of those ever get arthritis. Plus of those 10% it is usually males and in their teens. Isabella drew the lucky card!
Isabella has had a Bone Marrow Biopsy done in March at St. Judes. That ruled out all cancer and leukimia as of right now. She has had a MRI of her jaw in May which showes moderate to severe arthritis in her jaw. Very concerning. We are scheduled to see a Maxofaciall Doctor at the University in a couple weeks. We will then be starting injection of steroids in her jaws every few weeks in order to stop anymore bone loss and funtion.
We see a Pulmonlogist, Rheumatologist, Peditrican,and Opthalmologist now every 4-8 weeks. She gets lab work done every 6 weeks. We will be adding a Cardio doc and Neurologist in the next few weeks.
Right now she is on 8 meds daily with 2 injections of Methotrexate and Enbrel every Thursday. She is awesome with the shots! It doen't even phase her anymore. We don't make a big deal out of it. We do it and done! Off we go!
She still has pain. The meds right now are not at 100% We are to give it a few more weeks and then we will probably start infusions of Remicade.
What we are possibly facing. Complications of these toxic meds( i.e. organ failure, cancer, death) Complication from JIA (blindness, unable to walk, inflamation to her eyes, lungs, brain, and joints) The list goes on and on.
BLAH!!!!! I hate writing that!
We are keeping all this as lite as possible around the kids. Devon is wonderful at helping out and cheering her up when she is down. After the injections she is not feeling the best for a few days and he will watch movies with her and just hang out!
Ok, this is the just of it. I have kept the emotions out of this one inorder to fit it all in and get you all up to speed. I can't promise I can do the same from here on out!:)