I keep this blog in part to easily update family, friends, and other JA parents (and any other interested persons!) on how Anna is doing on her journey with Juvenile Arthritis. Since Anna was first diagnosed in 1999, the terminology has changed. I believe that now children are diagnosed with Juvenile Arthritis, or Juvenile Iodiopathic Arthritis, et. al. However, I created this blog a long time ago, when people referred the disease as Juvenile Rheumatoid Arthritis. Hence the "JRA."
Sunday, December 06, 2009
New Developments Since My Last Post
The past six weeks, besides being super busy, have also brought many new developments with Anna. She had an MRI on October 30th, to see if she may have arthritis in her jaw joints. The results came back, indicating past disease on the left and definite active disease on the right. We had a choice between waiting for a bit to see if the addition of Humira would take care of the active disease or scheduling an injection in the right jaw joint, where the active arthritis is present. We have doctor's appointments (both ophthalmologist and rheumatologist) scheduled on December 18th, so we decided to wait until then to make a decision about the injection. However, since that time, Anna started telling me about different things going on with her jaw. There is no pain for her, but her jaw has been doing some "weird" things according to Anna. Like, when she chews, it shifts to the side sometimes. So after a few e-mails back and forth between the rheumatologist and his staff, they worked to get a jaw injection scheduled sooner rather than later. I will call the radiologist's office tomorrow morning to confirm an appointment on Friday (December 11th) for an injection.
There's too much going on in life to really sit down and figure out how I feel about all of this. For right now, I feel "in my bones" that this is what needs to be done, and there are many times in life where you do what needs to be done regardless of your feelings about it all. I do, however, feel that in some small way, the jaw involvement is a confirmation of the "Humira step" being the right direction (I really did second guess that decision for at least a week!). The results of the MRI mean that the Methotrexate and Cyclosporine (and then Cellcept) were not enough to control the inflammation in Anna's body.
But now I need feedback from those who have experience with the jaw injections. Anna will be going on an all-day outing the day following the injection. I will not be there. (She's going to be with the church youth group and my friend--and youth leader--, Nancy.) For those of you who have "been there, done that" with your kids. What should I expect? Soft foods for 24-48 hours? I have absolutely NO experience with cortisone injections. I'm not afraid of them for Anna---just wondering what our expectations should be. I can ask tomorrow when I call to confirm the appointment, but I think the advice and feedback from veteran moms adds a valuable perspective. Thanks in advance for your insight!
(The pictures at the left are from Anna's "Turkey Trot" at the school in November. Her brother, Joel (an experienced long distance runner), came along to cheer on (yell at!--in a good way) all of the runners, and a friend took two pictures of Anna and Joel together.
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment