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."
Monday, December 15, 2008
The Fireflies Went Away, but then came back (just a few of them . . . )
(In the picture above, Anna is playing a "Toss the Christmas Card" game at a recent Christmas party, while her brother, Joel looks on)
It's been a long time since I updated! And well, you know, sometimes I'm never sure how many people read my blogs anyway, but it was so nice of Jacob's mom to ask how things are going. And since she asked . . . . sometime near Anna's birthday (in late September), we suspected that Anna might have pink eye (conjunctivitis). Believe it or not, this was my first experience as a mom with this condition---none of my kids had ever had it before. So I searched on the Internet to find symptoms, and I immediately found out that sometimes uveitis can be misdiagnosed as conjunctivitis. So I called Anna's pediatric ophthalmologist, and he was able to squeeze her into his schedule that morning. Even though I wasn't thrilled about conjunctivitis, I was actually very relieved that it wasn't a flare of the uveitis! (Her eyes were very, very pink, and I figured if it was uveitis, then it was a very big flare . . . because she had never had uveitis symptoms like this!).
So the doctor sent us home with sample drops (they were sufficient to combat the infection---we didn't even need to get the prescription filled).
The good news at that appointment was that Anna's eyes were totally clear of the inflammation. Her regular uveitis check was scheduled for about 10 days after this "Pink Eye Appointment." So we returned to the pediatric ophthalmologist for that appointment, only to find that a trace of white cells had returned to the left eye. Barely a trace, but a trace nonetheless. So we are keeping the same regimen of medication (the Cyclosporine, Methotrexate, Leucavorin, Pepcid Complete) for now. We go back in early January, and we'll see where we are at that point.
Her joints are fine. There was minimal concern about a part of her foot, but the pain she described was descriptive of a tendon issue rather than a joint issue. Anna had an appointment with the family doctor for a checkup last week, and the pain was no longer an issue for her, so it must have just been something minor that healed quickly. Anna continues to grow taller . . . she only needs to grow about an inch and a half to catch up to me! (But that's not saying much, since I'm pretty short!)
We continue to keep busy! Anna is greatly improving on the playing of her bassoon. She has a holiday concert tomorrow night at the elementary school. She sang with her dad at church yesterday (for the offertory) and received a great many compliments. :o)
Since I know some people are reading this blog, I'll do my best to keep it updated more frequently. I'm so glad that other Juvenile Arthritis parents find it helpful.
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4 comments:
Glad to hear she is doing so well! I do check often to see if you have updates. It is great when there isn't much to blog about anymore!It means no news is good news!I hope Anna continues to do well.
I origionally started my blog because of finding yours. When Jacob was diagnosed with uveitis this year I read through your entire blog. It is so helpful to read what others are going through.
Take care!
Joanne
Dear Joanne--Thank you! You know, sometimes I remember, but then I forget, that JA parents need to hear when things are going well, as well as when things are dicey and flaring. Hearing the stories of doing well offers hope, I think! :o) Are you on Facebook? Some other juvenile arthritis moms are there, although it's not as much of a group thing, but I have my blog forwarded to my notes on Facebook, too. If you're there, search for me . . . Tammy Zeigler in the Harrisburg, PA network, and just tell me in a message that you're Jacob's mom. :o) (if you want to, anyway!).
:o) ~ Tammy
Hi There! yes, I read your blog :) Erika here from the Pacific NW - my daughter Charlotte is 3 & when she was diagnosed with uveitis (1 year ago) as a result of her JRA, your blog was one of the 1st ones i found to understand this disease. You inspired me to share our journey. I have enjoyed seeing how much Anna is changing over the year, getting older, looking more beautiful each season! Yes, I like to share her joys "In the Clear" as well as get updated on her meds that are helping her stay that way!
We are currently on Methotrexate & monthly remicade treatments. not a fun road, but one that we have found necessary with her stubborn & aggressive uveitis. All is good in our camp right now!!! :)
TAke care & thank you for writing :) Best, Erika
Erika, thank you so much for your kind words!!! Joanne found me on Facebook---are you on Facebook, as well? I looked at your blog, and you've done a TERRIFIC job! I love it. I'm so sorry that Charlotte has to go the Remicade route. There was some discussion of that for Anna, but then we tried Cyclosporine first, and it worked. Charlotte's early history reminds me so much of Anna's early history (except that she didn't develop the uveitis until 18 months after the JA diagnosis). Thanks so much for posting a comment. It makes a difference knowing that people are checking and reading the blog, and knowing that it's really helping other parents. This will motivate me to keep at it, even when the news is really good!
:o)
Tammy
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