Flare?

Last Friday, she fell when she stepped off the bus. She stepped off the bottom step with her left leg (the weaker of the two) and it did not support her. Her knee buckled and she fell. 

Ten minutes later, she was telling me about her day and went to take a step backward with her left leg and her knee gave out again. Down she went. I try not to make a big deal about it when it happens, but I can't help but think, "What the heck?!"

And, that's when I remembered. Jay and I have seen this happen before. Right before a flare.

So, I was quite mad at myself today for not listening to my "mommy gut" on Sunday when I agreed to let her do the bouncy house at our annual church event. I watched her jump and jump and jump some more while I kept thinking to myself, "This is a bad idea. This is a bad idea!" But, how do you say "no" to your child when she wants to have fun with her friends? How do you tell her, "They can, but you can't." It sure is hard. Especially when everyone around you is saying, "Let her be a kid! Let her have fun!" But, they don't see the aftermath of what a bouncy house can do...

The left is clearly bigger than the right, but the right is also a bit puffy. See those lovely red spots on top of her knees (especially the one above her left kneecap)? Well, what we've learned from almost four years of PT is redness on skin near a joint indicates where fluid sits. And boy, were both knees hot!

She has not woken up with joint pain in over a year now.

It's not fun when your child wakes up and starts her day with pain. It's not fun watching her try to straighten her legs and can't. It is not fun watching her limp to the bathroom or have her beg you to carry her. 

No one sees THAT, but me.

She did go to to school today. But, around 10:30 a.m. I received an email from her teacher saying she was complaining of knee pain. Her teacher told the gym teacher to allow Mia to self-limit in class so as to not aggravate her joints in any way. When she got off the bus today, she was in tears. So, off to bed she went and she slept for two hours.

In the meantime, I emailed her rheumatologist to give her the update. I am still waiting to hear back.

Most importantly, we pray for our sweet girl and put everything in His hands.

Having a GoodBelly Helps Strengthen Ones Immune System

From the very beginning of our journey, we have believed that diet has had a role to play in our fight against juvenile rheumatoid arthritis. We have witnessed it first-hand - when Mia was 22 months old and diagnosed with JRA, we put her on a gluten-free, dairy-free, egg-free diet and added cod liver oil in and within a month her sedementation rate (inflammation in her body) dropped drastically. Doctors and therapists were amazed at how quickly we were able to get her flare under control. 


But now, we have two kids fighting the same disease. JJ has only been on NSAIDs since April 2011 (Naproxen and now Meloxicam). But, Mia has been on NSAIDs (Naproxen, Ibuprofen and now Indomethacin) for 4 year now. I know there are worse, stronger arthritis meds out there, but still, that is a long time for a child to be on medicine...every day...twice a day...no breaks....no remissions (yet!). 


In the meantime, I am going back to the beginning. Turning over every rock. Comparing their vaccinations, from their first shot to their most recent. And, doing whatever I can for them NOW to protect their bodies from any long-term, potential damage caused by their daily medicines. 


So, when a friend suggested I try something new, something healthy for my kids - something that would help their immune systems and their tummies, too - I said, "Yes! Absolutely yes!" While NSAIDs keep joints happy, over time they destroy tummies and intestinal tracts. This isn't anything new. We knew this when we started our journey with Mia. It is in the long list of side effects on every NSAID my kids have taken. However, alleviating their pain and getting the flares under control far outweighs the side effects of their medicines. You do what you can immediately to make them better, fast. But, truthfully, what has always been in the back of my mind is, "What is this going to do to their bodies in the long run? Will there be side effects to deal with down the road?" 


I watched the video and I was sold. I knew I could not pass this up. I immediately went out and bought our family some GoodBelly juice!

The way I see it is, "What can it hurt? If anything is will help their immune systems AND help their tummies at the same time!" Double bonus.


My friend also shared this article with me that was in Science Daily entitled, "Study Finds More Gut Reaction to Arthritis Drugs; Stomach Acid-Suppressing Drugs Appear to Damage Small Intestine." Here is an excerpt from the article:


"Suppressing acid secretion is effective for protecting the stomach from damage caused by NSAIDs, but these drugs appear to be shifting the damage from the stomach to the small intestine, where the ulcers may be more dangerous and more difficult to treat," said Wallace. He is director of the Farncombe institute and professor of medicine of the Michael G. DeGroote School of Medicine at McMaster.


He added that the use of probiotics is being investigated as a potential cure for the small intestine damage.

So, bottoms up! Here's to probiotics and trying new things that can only help along the way.