Took this picture of Anna this morning, and thought it was a good one. She ran in a Fun Run today (the first time she's done so), and she did well, although she really needs to train and to stretch before she does much more running! This photograph was taken before the 5K (in which her brother participated) and the Fun Run. It was a BEAUTIFUL morning in Pennsylvania!

A HUGE step in the right direction . . . . GREAT NEWS! Another ophthalmologist appointment today, and it was one of the best appointments in a very long time. No inflammation at ALL!!!! Anna isn't always aware of everything that's being discussed at these appointments (the doctor takes notes while facing away from her but towards me, and even though I can hear him talk to his assistant, Anna can't), and when I told her afterwards that her eyes are totally clear, she was thrilled, and then asked, "So why do I need to keep taking all of this medicine?" :o) We can't go "cold turkey" on the meds . . . . they are what's keeping the inflammation at bay for right now. But at least we can start to make little changes. For the next six weeks, we'll go from two eye drops down to one per day. But we'll keep the Methotrexate and the Cyclosporine (and Leucovorin and Pepcid Complete) at the same levels. Maybe we can lower the Methotrexate or Cyclosporine in six weeks. We'll see. But in the meantime, we'll be happy and grateful for this reprieve! A great way to start the school year coming up. We'll just hope we can keep lowering med doses. As I always tell all of those who I e-mail with this information, thank you ALL so much for your prayers. I know that God could choose to heal people if He wanted, but I also know that He has a greater purpose for the journey He sometimes allows us to travel, even when it seems like a heart-wrenching and painful road. I'm just grateful for now that we're at a plateau were the view is NICE!

Anna had another eye appointment yesterday. The good news (I guess it's good) is that her eyes are the same as a month ago (that means that her right eye is clear, I believe, and the left eye still has some cells there, but much improved since the spring---February and March). We continue with the same treatment. I guess it's a good appointment since nothing is worse. I was just hoping for more improvement, so that we could start decreasing medications; my expectations were too high, I guess, so I'm just a bit disappointed. And then sometimes I think of the "what ifs"---Anna's eye pressures were hovering in the low 20's (they took three pressure readings from each eye), and I worry that if her pressures rise, then we'll need to take her off the Pred Forte drop to her left eye. And if we do that, will the inflammation get worse? She's already on a generous dose of Cyclosporine, so if we have to stop the Pred Forte drops and the inflammation worsens, will that mean that we need to think about Remicade or Humira again?

Nevertheless, I always tell my kids we can't live in the "what if's" in life. I need to NOT worry about tomorrow, because tomorrow has enough worries of it's own. Just live in today and be at peace that for now. Anna's eyes aren't any worse, and for the next six weeks, we stay with the course that we're on.

Anna had to get some water in a little bottle for science class, and the teacher requested that the kids try to get water that was not from the tap! So we went to a nearby creek to get some. We stayed and Anna splashed around for about 45 minutes, before we had to pick up Abby from work. She probably would have stayed until sundown if we had the time! Next time we'll make sure she has her swimsuit on!

Good News today!!! Anna's eyes continue to improve. The right eye is clear; the left eye has trace cells. We can eliminate the dilating drop at night to the left eye and the daily Pred Forte drop to the right eye. We can decrease the Pred Forte drops to the left eye from three per day to two! Any little change as far as decreasing medications or eliminating medications is VERY good!!!! I continue to pray, though, that a decrease in Cyclosporine is in the near future. I'm not a big fan of some of these potent meds.

(Anna's eye pressures are decent, also. Right eye is at 20---that should go down now that we are eliminating the Pred Forte drop. Left eye is at 17, which is a good number within the normal range).

A BEAUTIFUL Mother's Day on City Island in Harrisburg. Getting out in the sunshine and gentle breeze with water nearby really helps to lift the spirits and is a balm for the soul! We'll see the ophthalmologist tomorrow and find out how Anna's eyes are doing.

We enjoyed a beautiful and fun-filled day at my cousin's/uncle's farm on Saturday. Anna receives her Methotrexate shot on Saturday afternoons, and she was thrilled that a "professional nurse" (my cousin) was available to give her the shot instead of mom! My cousin has lots more practice. (I was relieved not to have to do it this week, too!)

Brother Joel getting ready for a relay at a track meet

Well, a reprieve of sorts. I was rather nervous sitting and waiting for the verdict on Anna's eyes this afternoon, and I didn't take any reading material today. Spent all the "waiting" time praying for peace and acceptance of "wherever we go from here.". (I know so many of you have been praying, and I know God answers prayer, but I also know that He allows us to travel some journeys for many purposes, so He doesn't always---in fact, rarely does He seem to save us from the tough times and sometimes the nightmares of life.)

And the verdict from the ophthalmologist was . . . ."Better." Not a "let's celebrate, WhooHoo! better", but more like a hesitant "better." We keep doing what we're doing (Methotrexate, Cyclosporine, Pred Forte drops, dilating drops, Leucovorin), and we get to stretch out the time between appointments to THREE weeks instead of one or two (now I am definitely celebrating THAT fact!).

Well, last appointment was Friday (April 6). Anna's eyes are slightly improved, but not nearly where the ophthalmologist wants them to be. He had a lengthy (for him) discussion with me, and he really feels that we're heading towards Humira or Remicade. Neither of those sounds very fun for me to explain to Anna (Humira injections really hurt, and Remicade means being at the hospital for a few hours every 6-8 weeks for an infusion.) I'm also nervous about the cost---what insurance will cover and what we will be expected to pay (for either one of the options). The Cyclosporine itself is very expensive, although once we paid our prescription deductible, it's down to $35.00, so that's not too bad (when you consider that the retail cost of 100 mg for 30 days is over $191!).

I'm at a point (especially last week) when I really didn't want to think about arthritis or anything associated with arthritis. In my several-times-daily talks with God, I keeping telling him, "I DON'T LIKE THIS PART OF THE JOURNEY!" He hasn't promised to take it away, but He keeps telling me that I'm not alone---that's He's still right by my side.

I know down deep inside that once Anna gets used to whatever might be next, she'll be courageous and accepting, even if she doesn't like it. That doesn't stop any of us from just being sad that we even have to think about some unfavorable options (besides the fact that she probably will still need the Methotrexate injections and some of the Cyclosporine also, to start out with, as per the explanation of the ophthalmologist.) Does anyone with a heart ever want to tell their child that they will have to regularly receive a painful shot or spend hours at the hospital every few weeks with an IV dripping in? I'm still going through the grieving process and will eventually get to the point of grudging acceptance and then I'll be able to put on my strong and courageous face for Anna's sake.

Arthritis and Uveitis don't take up our whole lives! Spent a day at the regional level of National History Day (Anna's brother, Joel, wrote a paper). Had some downtime while there!

It'll soon be a year since I last posted (life is BUSY!!!!), and Anna's eyes have changed . . . not for the better. A few months ago, Anna's left eye had significant inflammation. We tried increasing the Methotrexate. No change. Added Cylcosporine. In two weeks, the inflammation was even worse. Now we've increased the Cyclosporine and added Pred Forte drops (and a drop at night to dilate her left pupil). As of Friday past, there was some improvement (probably due to the eye drops). The eye drops can only be temporary, because the Pred Forte drops have a history of making Anna's eye pressures rise. This is a very bumpy part of the JA journey. A little scary. Friends and family have been so supportive and encouraging. What would we do without our support system? Thought I'd post a new picture or two. Anna's brother Joel saw the last picture, and he said, "Mom, that's a REALLY old picture. You need to post a new one."

Anna had an appointment with the pediatric ophthalmologist last week, and her eyes are improving! In fact, the right eye is totally clear. The left eye still has just a trace of inflammation, but less than six weeks ago. The increased methotrexate is doing its job, and Anna hasn't experienced many side effects so far (except from a little nausea and vomitting a few hours after the shot).

It will soon be a year (or maybe it's already been a year) since her eyes first began flaring after trying to taper off the methotrexate. Except for the shots each week and the nightly doses of folic acid and Pepcid Complete (and occasional heartburn), life seems pretty normal, although normal is VERY hectic and chaotic! The school year will soon be over, and with as many activities that the kids are already looking forward to, I think the summer will fly by!

It's been a while since I've posted any updates! But I'm not sure if anyone is reading, and life has been extremely busy! We had an appointment with the ophthalmologist about six weeks ago, and Anna's eyes were improving, so the doctor did not want to change one thing. So we were optimisitc and glad that we didn't have to add eye drops again or increase the methotrexate. Went back for an eye checkup yesterday, and the inflammation in the left eye is increasing again, so we are increasing Anna's Methotrexate dose starting this week. The inflammation isn't bad, but it needs to be addressed.

Anna had an appointment with the pediatric ophthalmologist today. Her eyes (the uveitis) have not improved in the past few months, despite the methotrexate and the Pred Forte drops. So beginning this weekend, we'll increase the amount of Methotrexate she receives.

The inflammation in the eyes has no outward symptoms, and Anna has no complaints. At least that's good! She continues to dance---she loves it, and after the Holiday Dance Program (and seeing the older girls dance), she said she wants to continue until she graduates from high school! I think we'll take one year at a time for now! I took a few pictures at the program. Maybe after Christmas I can get one posted here.

I took Anna for a blood test yesterday, and that reminded me of some conversations around our house. When Anna was very young, she would scream and cry during the blood draws. I think my older kids tagged along for maybe 2-3 of those events (when they were too young to stay at home by themselves). Even though they were out in the waiting area, they could hear her getting hysterical each time. As Anna has gotten older, she has calmed down significantly (we changed labs---found a place close to home that is a small operation, and the lab techs have worked well with Anna and have gotten to know her). Since Anna no longer cries and gets hysterical, she has often encouraged her older siblings to come along to see that she doesn't cry. In her words, she says, "I just scwinch!" (Meaning she shuts her eyes tight and makes a face when they stick the needle in.) Her older brother, Joel, every time she says that, shakes his head, rolls his eyes, and says, "Anna, that's not a word." WELL!!!! Joel was looking up a word in the dictionary the other day, and he found the word "scwinch!" It actually IS a word, and Anna was using it most appropriately! We all laughed! Anna still can't convince Abby and Joel to come along to watch her get her blood drawn, though!

Anna and I just returned from an eye appointment. It wasn't bad, but not great. Just mildly frustrating. Both eyes continue to have a trace of inflammation, but the left eye is worse of a trace than last time. So for the left eye, we have to increase the Pred Forte drops to twice a day. I feel like this uveitis stuff is such a intricate balancing act--worrying about pressures rising with the increase in drops (although Anna's pressures are at 17 and 18 right now---not bad by any means). Last time she was on drops twice a day, they went up into the mid 20's, and we don't like them to be there. I've never had much patience for intricate balancing acts. Guess this is building my character.

At least the drive to and from Hershey was GORGEOUS through the valley with the autumn colors and the deep colors on the distant mountains and the huge autumn cumulous clouds! Gotta appreciate the small things in life!

Tammy

Anna's JRA Guestbook

Let's use this thread for the guestbook for Anna's JRA Page! If you visited Anna's JRA Page and want to post a 'hello,' please do so! I look forward to hearing from you!

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.