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.
2 comments:
My daughter was diagnosed with JRA the week before Thanksgiving. I recently started a blog for her to be able to update our friends and family with how she’s doing (without having to personally call and e-mail every one of them :) And hopefully get to know other JRA kids. I’ve slowly been reading the blogs that I have been able to find and I got the chance to read some of Anna’s today. The pictures of her running, playing bassoon make me so happy and hopeful. I’m glad to see she is doing so well. This is all so new and unknown for us, which I’m sure you can understand and I have no idea what the future holds. Bevin has been on Naproxen for over 3 weeks (an OTC anti-inflammatory for over 2 weeks prior to the Naproxen) and it hasn’t made a difference, we see the Rheumatologist for a follow in mid-Jan to see where we go from here. Her eye exam came back fine thou. She has Poly, currently both hips, both knees and her left ankle are affected…it looks like her fingers may also be affected now. She’s only 1 so she can’t really tell us one way or the other. It’s nice to be able to find all these other people out there.
As I mentioned, this is all so new so I don’t know too much except what I am finding online and what the Drs are telling us. I see you mention how Anna’s case is mild, but it seems like she’s on some pretty strong drugs. But I can clearly see from the pictures that she is able to be an active kid, which is great. Would you consider her case mild because it’s managed? Sorry for the personal questions, I know you don’t know me, I’m just trying to find out what I can and learn more about this.
Thanks,
Nicole
We recently started a blog for my daughter if you would like to read more about her story:
www.bevinsadventureswithjra.blogspot.com
Dear Nicole, I don't mind your questions one bit! By researching and reading blogs and asking questions, you are doing exactly as I did when Anna was first diagnosed. I can truly relate! I will try to answer some of your questions here. Also, if you're interested in being part of a group of JA parents and teens (similar to a message board), you can add me as a friend on Facebook (Tammy Barger Zeigler), and I can add you to a private, closed group we have there. (Similar to the message board I found when Anna was young--it was a lifeline to me, but the Internet has changed so much since then!)
I'm so glad you find Anna's story hopeful. That was my intent, because I was wanting a huge dose of hope when Anna was first diagnosed. I call Anna's disease mild because her inflammation has always been rather minimal but stubborn. While she had some range-of-motion issues at the age of 2 (a contracture in the knee which required a brace and some physical therapy), she has not often complained of pain (as many with JA do), even when active arthritis has been evident in her jaw and knees and big toe. Her biggest challenge has been the uveitis, and that disease has been the driving force in prescribing these biologic medications.
If you return for an appointment when the Naproxen has not been very effective, I'm assuming they will then prescribe a different medication. Some pediatric rheumatologists are very aggressive in treatment, and some are moderate. When Anna was first diagnosed, she was on Ibuprofren for quite a while (presription dose), and it was effective, but then when it stopped controlling the diseases (arthritis and uveitis), that's when we began trying other medications. You're not alone! Many of us have been on this journey and know that you'll sometimes need us to walk alongside you.
I look forward to reading your blog. (This week has been busy with the holidays, but I hope to catch up with some things beginning next week, so I'll take some time to read it then, if not before). Many hugs to you!
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