Saturday, June 4, 2011

1 in 1,000

"It is estimated that one child in every 1,000 will develop a rheumatic disease. Nearly 300,000 American children suffer from juvenile idiopathic arthritis, which begins before patients reach the age of 16 and may involve chronic inflammation of one or many joints. JIA often persists into adulthood and can cause long-term co-existing conditions and disability."   --American College of Rheumatology

1 in 1000 kids. That's a lot of kid but unless you know someone with a child who has JA you probably never new that kids as young as 6 months old could get arthritis. Some children are born with it.

This past April marks 6 years since Jordan's official diagnosis. We were told that she would "grow out of it" and live a normal life in a year or 2. I believed her doctor. 6 months after we were told she had JA the eye inflammation started. I remember sitting there thinking her eye exam was taking a lot longer then it usually did. Dr. McH looked at me and said, "I'm sorry." I knew at that point that we were in a fight.

In October 2004 we had a little limp, December 2004 a softball sized knee on a tiny toddler, February 2005 surgery on her knee, April 2005 a JA diagnosis and in October 2005 uveitis in both eyes. Looking back I can see there was something wrong with J as a baby. She never slept well. Still doesn't if she's flaring. Jordan did just about everything sooner then a typical baby. Except crawling and walking. Jordan scooted on her back or rolled. When she did finally start walking she drug her right leg. She was a clumsy toddler. Now it all makes sense.

Now I know that most kids do not out grow juvenile arthritis. Some do go into medicated remission but as soon as those medications are lowered or stopped, the arthritis becomes active again. Some kids are put on medication after medication just to find something that helps them. There isn't one drug that works for everyone. Some kids don't tolerate one well or they might be allergic. Then there are kids like Jordan who have been on more meds then the number of years she's been alive. Her body does really well on something for a while then it starts to reject the med. It stops working. Her eyes are usually the first to flare. Then the right knee and from there it goes wild. This is where we are now.

Jordan came home on Monday night after spending the weekend with Rick's Mom with puffy knees. About a month ago at her routine eye check her eyes had some inflammation. At her last Remicade infusion her inflammation levels were high. As soon as I saw her knees I started her back on naproxen twice a day. I emailed Dr. G to let her know what was going on and she agreed Jordan was starting to flare and that we have 3 options of what we can do next. She feels that J isn't able to go 6 weeks between infusions so we will probably go back to Remicade every 4 weeks, option 1. 2, we can up her dose of methotrexate (MTX). If you know J at all you know that this really isn't an option considering the dose she's on makes her sick even with zofran before and after her shot. Option 3, we can stop the MTX completely and put her on another immune suppressing drug called CellCept. This one is not a chemotherapy med but it's used in organ transplant patients to stop them from rejecting an organ. It has several of the same side effects as MTX so I'm worried that she won't do well with this one either.

These are the types of decisions thousands and thousands of families like ours need to make daily. My daughter has a chronic disease that causes her pain. If we do nothing she goes blind and won't be able to run or play like the other kids. If we give her these drugs we risk her developing cancer. We've already had the cancer scare twice.
That's a little update on my 1 in 1,000.

1 comment:

Deetipton said...

I totally know your frustrations, though in different ways. Em has always done well with her meds. What Jordan does with them is one of my worst fears. I worry that she will run out of meds. Then what? I hope her flare is stomped out quickly. :( I am amazed by how brave she is, what a trooper.

We loved her latest video too, by the way. Emily watched intently :) She kept saying "Just like me, Mom." She's seen your other video's but each one seems to make a new impact. And I'm amazed at how quickly they do Remicade there! We are there from noon to between 4-5 P.M. They give her Solumedrol, a one-hour infusion, then they do the Remicade over 4 hours. Sometimes it finishes early, but we're NEVER out in under 4 hours.