Goodbye, Indomethacin!!

Mia got a good report today! Her joints look great. No inflammation. Dr. Miller was very pleased with how well she looks!

After performing a few dance moves and doing the splits for Dr. Miller, Mia told her how she went to Dance Camp a few weeks ago...for an entire week (8:50 a.m. - 3:00 p.m.). Dr. Miller looked at me completely shocked that Mia was able to go that long and not have any pain. Mia told her, "No, I felt great!"

After examining her joints, she said to me, "She definitely needs to continue dancing...because it's helping. Her joints look great and her posture is outstanding." Staying active and keeping her joints moving is definitely helping!

All this to say, Dr. Miller said we can stop Indocin (Indomethacin). Mia has been taking Indocin every day for the last two years (before that, she was on Naproxen and then Ibuprofen; she has been on NSAIDS since she was 22 months old). She said, "I don't think she needs it anymore." We are SO happy!! Mia is SO happy! There is nothing better than seeing your child so excited when they find out they get to stop taking a medicine they've taken for so long!

Mia will continue to stay on a gluten-, dairy-, soy-, and egg-free diet. She has been off gluten and dairy since she was diagnosed with arthritis. We eliminated eggs a year ago when we found out she has a food sensitivity and allergy to them. We will continue her daily, arthritis-fighting supplements: cod liver oil, Vitamin D3, and pomegranate juice because we believe this regime is helping to keep her joints "happy."

Dr. Miller did notice a "popping" in her jaw, possibly TMJ, but said she was not too concerned about it. She ordered an MRI to be done next month just to check it out. She said it could be 1) arthritis or 2) mechanical (she is growing and developing so things are shifting and changing) or 3) nothing. She said doesn't expect that it is anything, but wants us to inquire the next time we are at a pediatric dentist (we go next Tuesday). Also, she has not had an MRI since 2007....so she is due for one.

All-in-all, it was a great appointment! I love these kind of appointments - the ones where you feel like what you are doing matters. We are heading in the right direction and it is an awesome feeling!

Thank you, God, for directing our paths and perfecting that which concerns us! We are blessed!

Food Sensitivities and NOW Food Allergies

As many of you know, we had Food Sensitivity Testing done last May for JJ and last August for Mia. The results showed that both kids have around 21 things their bodies are "sensitive" to:

This past Tuesday, per their pediatrician's request, we took all three kids in for Food Allergy Testing. My husband I both agree - doing blood work was worlds easier than food allergy testing. Recently, JJ has been getting hives again on his legs, around his belly button and a few on his face and he has been complaining after eating certain food that his throat feels "tight" and like he can't swallow. Mia started developing "pitting" on her thumbnails and big toenails last summer when she started to flare again really bad. And, James has had a milk and soy protein allergy since birth. When you add in a diagnosis of "arthritis" (our two oldest), one begins to wonder. So, the pediatrician said to me, "They all need to be tested so you and your husband know what you are dealing with here." 

The pediatrician and rheumatoligist both agree the kids are better when they avoid the foods on their Food Sensititvity List (it's so nice to have doctors work WITH you and not AGAINST you!). However, their pedi felt there was more going on and was important for their doctors, school nurses and for us to be aware so we know how to treat them should an allergic reaction or arthritic flare occur.

And, there was more going on.

Both Mia and JJ's test results showed they have an egg allergy. Mia's test results also showed she has a salmon allergy. And, James has a "delayed hypersensitivity" to milk and soy protein (which can also be found in rice cereal) and should he consume any of these it will cause "allergic proctocolitis," a benign disorder manifesting with blood-streaked stools.

Should they consume any of the foods they are allergic to, they do not need an EpiPen as they are both just below the mark to qualify for needing one. However, it is good for everyone to be aware there is an allergy present and, should they have a reaction or flare, that may be the reason why.

JJ still had a few hives left on his legs and the doctor was able to examine them. She determined he has "chronic hives" (urticaria), which can last up to six weeks (which is why they have not been going away with a dose of Benadryl) and they are auto-immune related. Nice to finally know because I think I spent the first year of his life spreading a prescribed combination of Aquaphor and hydrocortisone all over his legs to get rid of them! Never once was it considered he may have a food allergy or autoimmune disorder.

So, what are the triggers for urticaria? They are infections (common cold, strep, mono, etc.), NSAIDs, food allergies, warmth, sun exposure, etc. She told me 50% of patients with urticaria also have angioedema, something for us to watch out for with JJ. The doctor told us what this means is, for example, three years down the road, JJ may wake up one morning with swollen lips, throat and ears. The most important thing she said was that JJ should avoid NSAIDs, especially if hives are present because it can make the hives worse and trigger angioedema. I find this so interesting since he was treated for his JRA with NSAIDs! Well, good to know now!

For Mia, her Food Sensitivity Test showed she was "off the charts" for eggs and salmon was on the high end on her list. Her Food Allergy Test confirmed there is a definite egg allergy present and salmon is an issue, too. Well, guess who's been having eggs since she was a wee tot up until last summer? Yep...Mia. The food allergist doctor we saw said both kids should definitely continue taking their daily cod liver oil for their joints, however we should check to make sure there isn't any salmon oil in it because of Mia's allergy to it. Good thing there isn't!

And, because Mia and JJ have an allergy to eggs, this is why we do NOT do the flu shot for either of them. Many people would disagree and that is fine. However, even though Mia and JJ might not break out in hives or their throats may not close from having an egg-based flu shot, we believe the flu shot could cause them to have an arthritis flare. I have two friends whose kids have arthritis and immediately they flared after getting a flu shot - one of them even developed uveitis in their eyes. To me, that's not a coincidence.

Two great videos with excellent information about eggs, inflammation and rheumatoid arthritis can be found here:

Chicken, Eggs and Inflammation by Dr. Michael Greger, M.D.


Inflammatory Remarks About Arachidonic Acid

For James, all he has ever known are foods without milk, casein, and soy. And, as long as we avoid those items his tummy is fine. But, he eats like his brother and sister eat....to make my job as "chef" a bit easier. And, why not? It's definitely a health diet!

So, what's the plan now? It's simple: we continue with our current plan of avoiding all foods on their Food Sensitivity List and now we factor in the foods they are allergic to.

Many of you have asked me, "So what DO you feed your kids??" I am going to get to that. I promise! I am working on a "project" to help my friends who have kids with food sensitivities/allergies and those dealing with it themselves. It was definitely challenging and overwhelming in the beginning, but  a lot easier than you think. There are so many resources available these days and stores that carry amazing, tasty, allergy- and joint-friendly foods (at affordable prices people!!!). It definitely makes my job as mom/researcher/arthritis-fighter/nutritionist worlds easier.

So, we "soldier on!" As, I've said before, and explained to our little ones, our family is committed to "eating healthy to make our bodies happy." We are definitely all the better (and safer) for it!

Forever Thankful

May is "National Arthritis Awareness Month." We have many friends with children who are fighting this disease. We are still fighting this disease. Every day. And, we fight alongside so many amazing families and their very brave children...many who have become some of our dearest friends.

But, that's not what this post is about.

Today, I am rejoicing! I am beaming! Because this month marks one year that our son, JJ, is arthritis-free! His rheumatologist is amazed...astonished, even. She has seen him several times in the last year and still can not believe how healthy he is now. While our daughter has been the one who has fought this disease longer, the doctor has told us from the very beginning that she always saw JJ as the "sicker of the two kids."

Not anymore!

We went from having a son with fluid on many joints (elbows, left wrist, both hips, both knees and both ankles), to a child who has no pain anywhere. We went from having a son who woke up with morning stiffness and could hardly walk down the hall to go to the bathroom, who was constantly asking us to heat up rice socks to place on his aching joints, who was lethargic, pale and sickly-looking, to a child who wakes up happy, runs, plays, and then goes to bed without begging for hot rice socks and sleeps soundly through the night. We went from giving him daily doses of NSAIDs (Ibuprofen and then Meloxicam) to not having to give him any daily meds at all!

We have also gone from a having a son with severe gastrointestinal issues to one who feels absolutely fine after he eats. When JJ did eat, he would get sick about 20 minutes into the meal. He would either throw-up or his stomach would start to cramp so bad that he would cry and ask to go lay down on the couch with a rice sock on his tummy. He had chronic diarrhea. He had low-grade temps all of the time. We were basically living at Tufts Floating Hospital for Children, "floating" back and forth between the 2nd floor to see the gastro doc and the 4th floor to see the rheumatologist. His rheumatologist was the one who noticed it had been nine months since he'd put on any weight. JJ missed a ton of preschool that year and had to undergo a colonoscopy, endoscopy, upper GI series all within a few weeks of each other. Procedures that no little boy should have to go through.

Not anymore!

JJ no longer has gastrointestinal issues. The chronic diarrhea is gone. No more weird, random fevers. He loves to eat and no longer gets sick when he eats.

Which is probably causing many of you to ask, "So, what does he eat then?"

One year ago this month, we changed his diet and that's when the arthritis and the gastrointestinal issues stopped. JJ is on a gluten-free, dairy-free, wheat-free, egg-free, soy-free diet. He has a list of foods he is sensitive to that we avoid:

He also takes 1tsp of cod liver oil every day, 2 oz. of pomegranate juice (Pom), and 1000iu of Vitamin D3. And, that is it. No other medicines.

Like I said, we are still fighting. Our oldest child, Mia (age 7), is still fighting juvenile arthritis. But, I am not going to talk about the challenges we've had or the tears we've shed because of this horrible disease. Today, I am a thankful, ecstatic, joyful mom! Today, I am thanking God for hearing the prayers of two desperate parents and for putting the right people in our lives at the exact time we needed them. Because one year ago this month our son's life changed for the better. And that, my friends, is something to be forever thankful about.

"I thank you from my heart, and I will never stop singing your praises, my Lord and my God." 
Psalm 30:12

MTX Day

Mia had to skip her shot last Friday night because she came down with a fever right after school and, as we've been informed by her rheum, "You can't give a shot when a fever is present." So, I paged her rheum and she said to give it to her Sunday or Monday if her fever was gone.

Well, Monday rolled around and she still had a fever - lower than when it began, but a fever was still present. So, I emailed her doc and she said to skip it for this week and resume on Friday (today).

After having a week off, she woke up this morning a little upset knowing what today is - Shot Day. I understand - I am not the one getting the shot, but I am the one giving it. And, it was really nice to have a week off. Despite the fever she had, really nice.

So, I am doing her shot today when she gets out of school because we have something to go to tonight which conflicts with when she would usually get her shot (7pm). And, here's my plan: 1) Convince her to just "get it out of the way" so she can enjoy the weekend. 2) Extra hugs today (we will both need them). 3) Provide chocolate cupcakes (gluten-free, dairy-free, egg-free, soy-free) afterwards because chocolate always helps!

Shot Day is never fun, but I am doing my best to take the "sting" out of things and make it happier for her. So, we are overcoming by changing our outlook - making this better, happier, and yummier during this not-so-fun day. I am proud of my baby...my brave girl!

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