Tuesday, October 25, 2005

I'm creating this blog so that I can more easily update everyone on Anna's JRA Journey! I haven't been very good at updating my webpages since I took a part-time job three years ago, and since my older kids have more school work/projects to do on the computer!

The last I updated was in January 2004. (See the "Anna's JRA Journey" link from http://www.geocities.com/tlzeigler/AnnasJRA.html)

Since then a LOT has happened. Anna's stomach couldn't tolerate the Sulfasalazine. We found that out during an incredibly long and difficult week in the early winter of 2004. Lots of playing phone tag with doctors and stomach convulsions and Anna crying big, silent, crocodile tears after each meal. So we took her off Sulfasalazine.

My memory is a bit fuzzy at this point (that was 18 months ago!), but I think she was just on Vioxx for awhile. She was doing okay, but there were times her knees were getting stiff after sitting, and her eyes flared just a little. So if I remember correctly, we added Methotrexate (the pills). That helped. She was on a rather low dose, and still on Vioxx, and I think she was taking eye drops (Flurometholone) at the time, too. Then Vioxx was pulled off the market. I had just received a three-month supply, so we continued using it (because we've always liked Vioxx, and Anna never experienced adverse side effects).

Even after our very last dose of Vioxx, Anna continued to do well. So well, in fact, that her doctor decided to try lowering the Methotrexate (we never know how she'll do unless we try!). That was in the spring of 2005. Her doctor was hoping that maybe if she continued to do well, we could get her off medications before school began. That was not meant to be. Once we lowered her dose, her eyes flared. So we increased methotrexate (back to what she was taking initially---7.5 mg weekly). During that time, her pediatric ophthalmologist moved to Ohio (we STILL miss him!!!!!), and although it had nothing to do with the switch in pediatric ophthalmologists, Anna's eyes didn't respond at first to the stronger eye drops prescribed for the flare. So we increase the methotrexate again. Anna started vomiting at 2:00 a.m. each week after her bedtime dose of methotrexate.

So in July, we learned to give injections to Anna, and she now receives methotrexate by injection. (12.5 mg. weekly). She does okay with that, except that she's starting to experience anxiety each week during the hour before her shots, when we put Emla cream on to numb the area. I'm thinking through and praying about this, trying to figure out the best way to help her.

When I think back to the time when I first created Anna's JRA page (quite a few years ago), I think that it's been a rather long haul, although we've been very blessed that Anna has such a mild case of both the JRA and uveitis. It's just that when Anna was first diagnosed, I thought maybe within five years or so, she would grow out of it or something, and that we'd be able to go for at least some length of time without any medication. Not so.

Anna is now eight years old, and except for daily medication (folic acid & Pepcid Complete) and weekly medication (methotrexate) and daily eye drops (for the uveitis), she seems like a very normal child. She is a sweetheart---with a very gentle and compassionate disposition.


Anonymous said...

Hey Tracey - very nice job! And Anna is just gorgeous!!!


Trischa said...

Hi Tammy. This isn't so much a comment as it is a question, but I didn't see an email address for you so I figured I'd just try commenting. I have a friend whose three-year-old was recently diagnosed with JRA. Do you have any suggestions on offering support to her? She and I are not especially close friends, but our husbands have been friends since childhood so our families get together from time to time. Was there anything you found helpful when you were first learning to live with Anna's JRA? Was it better for you if people didn't bring it up and just let you talk if you wanted to? I want her to know that I care, but I don't want to seem like I'm prying or anything like that. Any advice you can give would be much appreciated! Thank you and thank you for sharing your story!

Tammy Z said...

Trischa, Questions are always welcome! I guess I'll have to add my e-mail link somewhere on this page! Sorry for the oversight. Your question is a very good one, and I have the perspective of ten years. At initial diagnosis, I remember going through a grieving process. It's difficult, because you don't want people to ignore this new element in your life, yet I as a parent struggled for many years with my expectations of other people. During that first year or two, I did need to talk about it, and what I really wanted was for people to listen without offering any advice. I searched and searched the internet for information, and I really didn't want or need advice from people who had never realized that children could be diagnosed with arthritis. Adult arthritis is different from Juvenile arthritis. So maybe as you talk to your friend, you can ask her some basic questions like how the medications are working or what the doctors are saying, and then let her talk. It's also always good to know that people are thinking about and praying for families who are reeling from a diagnosis of a chronic disease. Sometimes that's the most important thing to know. It might not hurt to mention all the support that is available on the Internet from other parents who are going through something similar--people who have been walking on the journey in which they now find themselves. (A bunch of us used to be on message boards, and now we basically touch base and sometimes ask questions via Facebook.) Does that help at all? (I apologize for the delay in posting your comment. I have to monitor comments to weed out spam comments, and we were having Internet connection problems the past few days).