A Tale of Two Kids: The Same, But Different

These are my babies. They are only 19 months apart. Sweetest, dearest and most joyful kids I know (along with their two-year-old brother!). This is their story. It is a story that has caused this mommy to shed many tears along the way. With two kids diagnosed with the same auto-immune disease, juvenile rheumatoid arthritis, this journey has not been an easy one for our family. We've fought hard. 

BUT, it is also one I write with great joy (and relief!) in my heart, thanking God for putting people in our path to help us, educate us and point us in the right direction at a time when we needed it the most. 

With that said, here is my latest update on my children, Mia and Jonathan. 

This is both of their stories...the same, but different.

As many of you know, Mia (ANA+) was diagnosed first. She showed her first signs of the disease at 15-months-old. By 22 months, we finally had a answer for all the swollen joints, the limping, the pain in our daughter's body - "arthrits." From that moment on, we started on the road of using NSAIDs to control the inflammation in her body. She went from Naproxen, then to Ibuprofen, and finally switched to Indocin (her current med). When she was two-years-old, she wore a brace to bed to keep her leg straight. Mia has been going to physical therapy, "off when joints are calm and "on" when she was in a flare, for five years. She's had numerous x-rays and ultrasounds done. She's also had seven joints flare out of control where she's needed to have them drained of fluid and injected with steroids. The last five years have not been the easiest for her, but she smiles through it! I've always said that God gave her a bubbly, joyful personality for a reason. :)

While JJ was given the same diagnosis as Mia, his story is different...just as each child is different.

JJ (ANA-) was diagnosed with JRA at age 3. He had all the same symptoms as his sister - morning stiffness, swollen joints, constant pain. JJ started out on Naproxen, but it was too strong on his stomach. So, two months after his diagnosis, his rheumatologist switched him to Meloxicam, which is supposed to be gentler on the stomach. I remember the appointment clearly because she also noticed something odd with JJ - he was not gaining weight and hadn't been for a long time. He had been "stuck" at 33 lbs for too long. Shortly after that appointment, things started to spiral downward...fast.

By the fall last year, JJ was having chronic gastrointestinal distress. He would get severe stomach pain while eating, or he would vomit immediately after eating. He was constantly asking for me to heat up the rice sock for his tummy and would excuse himself from the table so he could lay down on the couch. He would skip meals all the time, because he didn't feel good when he ate. He'd have severe diarrhea for days. JJ became pale, lethargic and sickly, missing a ton of school. And, in the midst of it all, he still had horrible joint pain.

The rheumatologist and gastrointestinal doctors worked with us to try to figure out what was wrong with our son. Blood work was done and test were ordered - colonoscopy, endoscopy, upper g.i. series - to check for Crohn's, Celiac and IBD. Finally, tests came back showing JJ was "borderline Celiac," but not enough to say it was "officially" Celiac's Disease. But, the gastrointestinal doctor told us he felt like that was where JJ was heading and wanted to have JJ retested in a few months. 

Fast forward to this past spring: JJ's joint pain became worse. He started complaining of hip pain. So, ultrasounds and x-rays were ordered and, sure enough, he had fluid on his hips, wrists, left elbow and both knees. And so, we started to do all the preparations to start him on methotrexate. 

But, this is where JJ's story changed.

Dr. Don Colbert,  a board-certified family practitioner since 1987 and also "New York Times" best-selling author who has written over 40 books, including "The Seven Pillars of Health," visited our church last May - as I mentioned before, at a time when we needed it the most. Dr. Colbert is an expert on health and nutrition and has appeared on Fox News, ABC World News, The BBC, Reader's Digest, Newsweek, and Prevention Magazine. He talked about his personal testimony of healing through healthy living, and shared about how most auto-immune diseases are caused by eating the wrong foods for your body. I felt like he was talking to me. 

So many things we already knew to do for the kids as far as healthy eating/reducing inflammation was concerned (avoid gluten and dairy, avoid nightshades), but weren't doing them. Because "eating healthy" isn't an easy road....especially for kids. Birthday parties are the hardest as they want to eat whatever their friends are eating. And, parents cave and give in. But, as Dr. Colbert shared, I realized there were so many other things I had not yet discovered concerning how specific foods affect our bodies positively or negatively. Things I had not tried yet with the kids. Things worth trying!

After getting helpful advice from Dr. Colbert, Jay and I decided to hold off on starting methotrexate for JJ until we had tried a few other things with his diet first. And, we did the same with Mia. I sat down with both of my kids and told them we were going to "eat healthy to make our bodies happy." It was as simple as that and my kids were on board. (I love my kids!)

Per Dr. Colbert's advice, this is what we did:

• Started them on Vitamin D3 - 2000iu for one week then decreasing to 1000iu (taken once a day)
• Started Probiotic 225 every day (I put it in their applesauce).
• 1 tsp of cod liver oil per day (we still use Carlson's Norwegian because it is easier for the kids to take)
• 2 oz. of pomegranate juice every day (has to be the "real deal," so we prefer PomWonderful) because pomegranates suppress inflammation and joint damage in rheumatoid arthritis
• The big one: we had food sensitivity tests done (through blood work) for both kids. 

We started with JJ because, at that time, he was sicker than Mia. With JJ, we discovered he had around 24 foods that were "harmful" to his body, some higher than others:

We started by eliminating those foods from his diet. Some of you are probably asking, "So, what CAN he eat??" I plan to save that for a future blog post. :) But, I will tell you this: his gastrointestinal distress stopped almost immediately. Even JJ could tell a difference just by what he was eating. It was amazing!  He started to get color back in his face again. He had more energy. He looked like himself again! He went from being "stuck" at 33lbs to recently weighing in at a wonderful 39lbs! He won't even touch anything that has gluten or dairy in it because he can tell a difference in his own body (he won't even let you put sunblock on him unless it is "gluten-free" - ha!)

And then, the joint pain stopped. No more morning stiffness. No more asking for the rice sock throughout the day and in the middle of the night (for joints or stomach). No more medicine for JJ. Around six weeks after we eliminated those "harmful foods," we checked in with his rheumatologist and he got his first report from the doctor saying, "There is no evidence of arthritis in JJ's body at this time." Since then, JJ has been back to see the rheumatologist one other time in August and received the same report. We are going on seven months of no joint pain and inflammation and no stomach pain in his body! Thank GOD!! 

I understand it the way Dr. Colbert explained it to us in church that Sunday - the disease is still there, but it is being controlled through diet. Inflammation decreased by "eating healthy to make their bodies happy." It works and it worked for our son. And, I am happy and proud to share it! Friends and family members tell us all the time what a difference they see in him from last fall to now. He is healthy. We are beyond thankful!!

So, what about our daughter?

Mid-July, Mia started to flare again - this time in her right ankle and big toe on her right foot. So, we had the same food test done for Mia. Like I said, every child is different. And, just as arthritis affects Mia's body differently than it did JJ's, so does food. 

Her food test results were the following:

While Mia has been on a gluten-free, dairy-free diet for the majority of her life, we have allowed her to eat eggs, chicken and turkey. In fact, she loves them. And would eat them more than anything. But, apparently, she was "off the charts" for the foods that she loved to eat. So, we eliminated them. (How I cook for her is totally different than how I cook for JJ....a post for another time!)

At this point, you may be wondering, "Why didn't Mia respond like her brother did to the diet change?" This is what I know...what makes the most sense to me through all of this (and I know I am not a doctor, but I am their mother!): this disease has been with Mia longer than it was with JJ, she has been eating foods that have not helped her body or her immune system to thrive and be well, and the disease hit her harder than it did her brother (as what we know to be true about JRA - it affects girls more frequently than it does boys). JJ never reached the point that his sister did where we needed joints to be drained and injected for them to go down. The same, but different.

And, the arthritis is starting to destroy her joints. Toes are curling inward, knees are filled with fluid and are "bulky-looking" and, despite her recent joint drains and injections, the pain and inflammation are still there.

So, we do what we know to do, what we've always done: rely on the help of medicine to control the inflammation throughout her body. 

With that said, we are starting methotrexate (10mg/0.4mls) with Mia. We met with her rheumatologist today and we all agree - it is time. She will be starting weekly injections that either Jay or I will be giving to her every Friday night. She will have blood work done every month to monitor her liver and kidney levels while on this new medication. She will remain on Indocin (12 mls per day) while on Methotrexate. She will continue to stay on the diet and "eat healthy to make her body happy." And, she will continue to dance! :)

To be honest, at this point we just want relief for her body. She's been in and out of the school nurse's office since school started, icing her joints. This will help her to not miss as much school as she has been missing and just calm things down for her. 

So, those are their stories...the same, but different. Same disease, but different outcomes (so far) related to changes in diet. We are believing that over time, and through the help of medicine and healthy eating, we will see the same results for Mia as we have for JJ. That is our prayer.

Thank you for taking time to read my super long post! I am thankful to be surrounded by "veterans" who have gone before us and have offered great tips and advice for a road we have not walked down with Mia until now. I am thankful for my group of paleo/healthy eaters/veganbakers whose recipes and tips help me in the kitchen - I don't know where I'd be without you! I am one very blessed daughter to have two wonderful parents who have listened, encourage, cried with us, hugged us and supported us from far away. I am also thankful for amazing in-laws who have helped us to "dig deeper" and get to the root of the problem, who have stood with us, believed in us, prayed for us and encouraged us when we needed it the most. Our family is surrounded by a great "team," near and far, and we constantly feel your love and prayers for our children and for us. God bless all of you!

"They do not suffer pain, they are strong and healthy." Psalm 73:4