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."
Saturday, October 09, 2010
This plate is spinning along just fine! . . . .
After Anna's appointment with the pediatric rheumatologist yesterday, I was thinking that my life at this point in time seems like I'm one of those people up on a stage, keeping a row of plates spinning, trying to make sure that none fall and splinter into pieces. Since 1999, one of those proverbial plates has been Anna's arthritis and uveitis issues. Well, thank the Lord, "this plate is spinning along just fine." Since the spring, both knees have been injected (with steroids), and one side of the jaw has had an injection (for the second time). Anna had made two separate comments about her hips in the past week, so Dr. G. paid special attention in his examination of the hips, but he thinks that Anna's one comment was related to puberty and more of a tendon and hormone issue than a joint issue. That's a relief! We haven't had to deal with arthritis in the hips up to this point. As always, Dr. G. is thinking ahead and went over some other medication options (there aren't many options left for Anna) just in case the eyes don't settle down with the steroid drops and in the event that the joints flare again. But rheumatologists from all over the world will gather in November and discuss all of the medications "in the pipeline"---the ones that may offer hope which haven't yet been published in the medical journals yet. So more options may be available in the future.
We're staying with the status quo for medication: Humira (injection every ten days), Methotrexate (15 mg. once a week orally), Leucovorin (5 mg. 2x week), Claritin (on Humira shot days to prevent hives/itching at the injection site), Pred Forte eye drops (twice daily), and then the daily Calcium and multi-vitamin supplements.
So this is fine news for now (since I haven't noticed any major side effects with the current meds, I've become quite comfortable with where we are right now), and we don't need to go back until February. So I can now go back to keeping all of my other (many and various) "plates" spinning. (Just in case one or more of those "plates" fall and crash, though, I've had this one song playing in my head for several weeks---"You can come as you are, with all your broken pieces . . . . bring them all to Jesus; you can come as you are."--so working on "not worrying about anything but praying about everything"----there's a whole lot in our lives right now to be praying about!)
I will say, though---I attended a Beth Moore Bible Study right before picking up Anna from school and heading to Hershey. And Hershey was just my 2nd or third stop for the day before attending to my list of about five other things I needed to accomplish before evening. It was a GREAT morning for Bible Study, and I was thinking that one of the best ways to begin a very busy day (including an appointment with a specialist) is with a Beth Moore Bible Study (inspirational, thought provoking, deep, and encouraging) and great discussion with some authentic and wise women! Our next few appointments in Hershey (November for the eyes, February for the joints) are on Fridays---so maybe I can continue this trend (Bible Study, then appointments).
Friday, October 01, 2010
Another Eye Appointment for Anna . . . .
Life has been extremely busy, so we were so glad that it's been two months since we needed an eye appointment for Anna (last year around this time, I think we were going every two or three weeks). We've been going to this pediatric ophthalmologist for years, and since he had a major changeover in staff about two years ago, we've come to know and appreciate the people who work there. They got to know Anna well last year (since she's a "frequent flyer" there), and once when they realized that the ophthalmologist had called the pediatric rheumatologist and was waiting for a return call, they had gathered at the receptionist's window as we were leaving and whispered to us (with worried looks on their faces), "Is Anna okay?!" They didn't realize that this was just one of many of this type of call through the years, and it was really just a matter of coordinating systemic medication. I thought that was so sweet of them to care that much---made them feel like family members.
All that to say, I went in today (new office building---it's GREAT!) to find that I didn't recognize any staff there---but we were there just in early August! Only the doctor seemed to be the same! I did realize that one of the girls had just had a makeover, and I only saw the back of her, so didn't recognize her at first (new, lovely hair cut, and different type of clothes). Getting used to new staff when you've been going to a practice for years and years is not my favorite thing to do. They don't realize that we come so often that we know the "ropes" really well. We'll adjust. (The one new nurse seems very competent, but I really will miss the sweet and smiling receptionist!--I was told that she left for a job in her field of communications.)
So how are Anna's eyes? The right eye is almost "perfect." The left eye has a trace of inflammation. I said "Oh, good!" (That IS good for Anna!!!---that left eye has sometimes been up to a "2" out of "4." So I'm thinking "trace" is good.) Well, Dr. M. made a little face and said, "Well, . . ." And then he decided that Anna should have Pred Forte eye drops twice a day for the next six weeks. But I'm happy about that, too! I would much prefer Pred Forte drops to increasing Humira or Methotrexate! And he usually prefers to increase meds than to prescribe drops for Anna---so this is good!
Personally, I am happy with the outcome of this appointment. (I've gotten used to a 'trace' of inflammation.) We go back in mid-November. Anna sees the pediatric rheumatologist next Friday.
Life is just crazy-busy right now.
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