TMJ Arthritis

For those who are new to our blog, this is our family's journey to health and wellness. You can read about how our journey started here. It's been a long road - filled with ups and downs. Lots of victories and lots of tears. But, through every challenge we have faced, not once during the last six years have we been defeated.

Six years ago tomorrow, I received a phone call from a rheumatologist in Boston informing me that my baby girl had an auto-immune disease - juvenile rheumatoid arthritis. I remember the call like it was yesterday - the time of day I got the call, where I was standing in my house when I answered the phone, the question of "How does she have an old person's disease?? She's not even two years old!!" flooded my mind. 

Since that phone call, Mia had been on NSAIDs after NSAID. Last November, we started weekly injections of methotrexate. She has had seven joints drained and then injected with cortisone whenever a flare happened that we couldn't get under control. Which brings me to what she is currently facing: TMJ arthritis. That's right - arthritis in her jaw. 

First of all, if you know my daughter. She is a HUGE meat eater. She makes her father proud because she eats like he does! So, arthritis can't stay in her jaw because she needs to be able to eat ribs, chow down on a steak the size of her head, and eat chicken until we tell her she should probably stop soon and go to bed. 

Secondly, she's a performer. And, performers like to talk (a lot). They like to sing, dance and play the recorder at the crack of dawn to serenade the entire house on a Saturday morning. So, arthritis can't stay in her jaw because she is a performer.

Thirdly, arthritis can't stay in her jaw because I am her mom and I say so! I will fight this to the very end. Every day is a fight and little by little we overcome. A friend of mine once said, "When it comes to your kids, you become a 'Mama Bear,' especially if they are in pain or sick. Moms dig deep. And then, they dig even deeper. Moms keep going because we are graced to do so! And, I am graced to do whatever it takes to ease her pain and overcome this disease. 

Because she is my girl and means the world to me.

About four months ago, I noticed she had been grinding her teeth when she sleeps. I listened as she slept - tons of popping and crackling coming from her mouth whenever she stirred. Fast forward to her appointment this past August with her rheumatologist. Her doctor told us her joints looked amazing and everything was "quiet" - no flares. She even told us to stop her daily NSAID (indomethacin). Then she placed her hands on either side of Mia's face and told her to open and close her mouth. She felt the "popping" on both sides and told me, "It has gotten worse." 

So, Mia had an MRI done on her jaw. The MRI showed the damage the arthritis has done to her jaw, especially to the right side. 

Fast forward to two weeks ago: Mia was sitting at the kitchen table, eating a sandwich while I was doing the dishes. Then I heard it - a LOUD "pop" - which was immediately followed by my girl in complete agony and tears from the pain in her jaw. It dislocated while she was having lunch. And, then it happened again a few minutes later. 

I contacted a friend who is a naturopath and she recommended an all-natural pain relief gel - Traumeel. What is Traumeel?: it is a versatile pain reliever, providing temporary relief of minor aches and pains associated with sports injuries, sprains, muscle aches and bruises, as well as arthritis pain and inflammation. For over 50 years physicians have been recommending Traumeel as a safe alternative to anti-inflammatory drugs. 

Well, it worked! We apply it right to the jaw whenever it starts to hurt and it alleviates the pain. Mia's school nurse, who is absolutely wonderful and a believer in homeopathic medicine, agreed to keep a tube of Traumeel gel in her office for Mia and apply it whenever she needed it. 

Today, we met with a new doctor at Tufts Dental School - Dr. Papageorge. She did a panoramic view of Mia's jaw and confirmed what we already knew - Mia has degenerative joint disease in her jaw. The right side is worse than the left. The arthritis is also preventing her jaw from growing. And, the painful "pop" that occurred while Mia was eating lunch was caused because she has an "internal derangement" of the disk. The doctor told us, if not taken care of, it would eventually pop out and not pop back in, resulting in excruciating pain.

So, what's next? Mia's new TMJ doctor wants to get in her in a soon as possible to have a steroid injection done on her jaw. This procedure, which she has had done to both of her knees (her left knee 2x), her right elbow, either side of her right ankle and her big toe, will now be done to either side of her jaw. So, we know what to expect - she will be asleep for the procedure and, after it is done, it will eventually bring relief from the pain in her joints. However, the doctor told us it will take her 2-3 days for recovery because the procedure will cause her face to swell on either side. 

Also, Mia will be meeting with another new doctor next week to discuss having a night-time retainer made to help her jaw relax and help manage her pain. I didn't have an appointment, but the doctor happened to be at the front desk and met with me. His assistant told me he was booked until December, but he went to his office and came back and told me he would get us in next Tuesday. He was extremely nice. I am very thankful for the doctors who've been put in our path to help our girl!

In the meantime, Dr. Papageorge wants us to continue using the Traumeel gel whenever Mia is in pain until we can get her in for the procedure in two weeks. She said Traumeel is great for temporary pain relief and agreed that starting her back up on NSAIDs was not necessary because the rest of her body is doing great. 

Our family has MUCH to be thankful for! We are surrounded by a wonderful, loving family who have stood by us since the beginning. We have thoughtful, encouraging friends who know how to "pick us up" during the toughest times. We have the BEST doctors, physical therapists, naturopaths available when we need them. 

And, we have a hope! We are not defeated. Yes, this is another challenge to face, but we face it together as a family with God on our side. Mia is an overcomer through and through. We are blessed.

"Let your hope make you glad. Be patient in time of trouble and never stop praying." 

- Romans 12:12

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!