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