I also shared with her that Mia has been taking arnica (6c; 5 pellets under tongue 3x a day) as recommended by our family's naturopath. She said, "Arnica is wonderful for joint pain and inflammation!" At night, I am using doTERRA's Deep Blue essential oil blend on her jaw. Mia loves how it feels and says it "numbs the pain" in her jaw, allowing her to sleep comfortably.Friday, October 18, 2013
Happy Joints!
I also shared with her that Mia has been taking arnica (6c; 5 pellets under tongue 3x a day) as recommended by our family's naturopath. She said, "Arnica is wonderful for joint pain and inflammation!" At night, I am using doTERRA's Deep Blue essential oil blend on her jaw. Mia loves how it feels and says it "numbs the pain" in her jaw, allowing her to sleep comfortably.Posted by Dana at 10:04 AM 0 comments! Leave yours here!
Labels: autoimmunedisease, dance, homeopathicmedicine, juvenile arthritis, naturopath, overcome, tmjarthritis
Tuesday, October 15, 2013
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.
Posted by Dana at 10:46 PM 3 comments! Leave yours here!
Labels: autoimmunedisease, autoimmunedisorder, homeopathicmedicine, juvenilearthritis, naturopath, tmjarthritis
Thursday, July 25, 2013
Goodbye, Indomethacin!!
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!
Posted by Dana at 12:25 PM 1 comments! Leave yours here!
Labels: #foodallergies, autoimmunedisease, clean eating, dairy-free, dance, diet, egg-free, foodsensitivies, gluten-free, juvenile arthritis, oneWord365, overcome, soy-free, thankful, uveitis
Thursday, May 23, 2013
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:
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.
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!
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!
Posted by Dana at 12:40 PM 1 comments! Leave yours here!
Labels: #foodallergies, allergicreaction, arthritis awareness, autoimmunedisease, autoimmunedisorder, clean eating, dairyfree, eggfree, foodsensitivies, gluten-free, glutenfree, juvenile arthritis, soyfree, uveitis, vegan
Friday, May 03, 2013
Make a Difference: Vote for Brayden!
Juvenile arthritis friends! We need your help!!
Brayden Christmas, age 6, was born with a rare genetic disorder called L-1 Syndrome and has endured 13 surgeries in his life. Brayden is the only child from New Hampshire in the National Mobility Awareness Month contest online. With your help, he could be chosen as the winner of a wheelchair-accessible van. His parents, some of our dearest friends and youth pastors at our church, said it would be a blessing for him as he goes to school and makes friends.
Please vote for Brayden Christmas to WIN! We need your vote! You can vote once every day until May 10th. If you answer the bonus question, your vote counts double for Brayden. Thank you for making a difference in the life of this wonderful boy and his family!
Click on the links below to vote for Brayden and show support!
VOTE HERE"LIKE" BRAYDEN'S RIDE PAGE ON FACEBOOK
BRAYDEN'S STORY
BRAYDEN IN THE NEWS
Posted by Dana at 12:56 PM 0 comments! Leave yours here!
Labels: localhero, mobilityawarenessmonth
Wednesday, May 01, 2013
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
Posted by Dana at 4:30 PM 0 comments! Leave yours here!
Labels: arthritis awareness, arthritis month, clean eating, dairy-free, diet, egg-free, gluten-free, juvenile arthritis, oneWord365, overcome, soy-free, thankful, uveitis, vegan
Thursday, April 18, 2013
Uveitis Check-up & Rheum Appt
At the beginning of the week, both Mia and JJ had uveitis check-ups at MERSI. JJ still goes every six months and Mia goes every three months. Both kids got great reports - eyes are CLEAR!!
Today, Mia had a rheumatologist check-up with Dr. Miller. She just had labs done a few weeks ago and those came back fine. We have weaned her down from 12mls of Indocin to 6mls (she just takes it in the morning now). Dr. Miller had hoped by this appointment we'd be able to completely eliminate the Indocin altogether and Mia would just be on the weekly injections of Methotrexate. However, during the physical exam, Dr. Miller noticed Mia's elbows have fluid on them and are swollen - the right more than the left. The right elbow is the one that she had drained when she was three years old. Her elbows don't bother her, but when Mia tries to touch her hands to her shoulders there is pain. Dr. Miller said they weren't bad enough to need to have them drained and injected - just something to keep an eye on.
With that said, Dr. Miller told us to stick with the current dose of Indocin and not change anything just yet. She was concerned if we took her off of it, she may have a really bad flare and wanted her to have a fun and enjoyable summer. Other than the elbows, the rest of her joints look great! No fluid on the knees, toes look good, ankles, fingers, hips, spine, jaw, neck, and wrists all fine!
So, after Mia showed Dr. Miller how she can do center and side splits and then performed her ballet routine, which Dr. Miller was thoroughly impressed with (and makes notes in Mia's file of what she is able to do), she told us she would see us in three months from now.
All in all, we are very happy and thank God for Mia's good report today and for clear eyes for our kids this week!
Prayer request - We will be heading back to Tufts in Boston tomorrow because our youngest child (2yo) will be having a tonsillectomy and adenoidectomy. We have gone through this procedure with our two oldest kids, so we are "old pros" at this point! He will be admitted afterwards (standard procedure for kids 3yo and under). Please keep him in your prayers as he is still fighting off a bad case of bronchitis (which the doctor believes was caused by the tonsils). We are believing all will go well tomorrow with the procedure and he will recover quickly without any complications. Thank you!
Posted by Dana at 1:35 PM 0 comments! Leave yours here!
Monday, March 18, 2013
She's Come A Long Way, Baby!
If you only knew.
I remember when she was so very little and my husband would have to have to restrain her with his strong, Italian arms so they could do blood work. And then, we were back there a month later doing it all over again. And, the month after that. And, it never got easier. And, it was stressful for everyone. Every time it was the same thing (you can ask my husband!): I remember sitting in the lab waiting room at Tufts as I heard my two-year-old daughter screaming because she knew what was coming... and we all hated every moment of it.
But, now!!
She's seven and those tearful, fearful days are gone. Granted, she does have a favorite room at Winchester Hospital's Lab Dept. that she prefers to have her labs done in every month - the Children's Room - but, who can blame her? If that is what calms her fears so we can get in and out and be done with monthly labs, then by all means! Let her be picky!
Tonight, when we got to the hospital, that room wasn't available because another child (around the age that Mia started with routine labs) was in there getting his labs done - letting out very familiar screams. Mia was directed by the nurse to a regular room - a very plain, sterile room - and I could tell within two seconds of being in that room this wasn't going to work for her. But, instead of getting upset, she got quiet and then kindly asked the nurse, "May I please wait for my room instead?" The nurse was very understanding and we went back out to the waiting room to wait for "Mia's room" to beome available.
And then, we were called back, once again, and Mia hopped up in "her chair" and did her labs without the nurses or Mommy having to hold her down.
She amazes me!
All this to say...it's the little things that matter on this journey. And, my daughter is overcoming every day - even with the little things!
Posted by Dana at 10:43 PM 1 comments! Leave yours here!
Labels: arthritis awareness, juvenile arthritis, labs, oneWord365, overcome
Friday, February 01, 2013
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!
Posted by Dana at 3:36 PM 1 comments! Leave yours here!
Labels: dairy-free, diet, egg-free, gluten-free, juvenile arthritis, oneWord365, overcome, paleo, soy-free, uveitis, vegan
Friday, January 18, 2013
Uveitis Check-up
Since Mia was diagnosed in 2007 with juvenile arthritis, she gets her eyes checked every three months for inflammation (uveitis). Mia is ANA+. And, even though her brother has gotten several great reports that he is "arthritis free" from his rheumatologist, we still have him go every six months to have his eyes checked, too. JJ is ANA-.
So, today they go to Cambridge to see Dr. Foster to get their eyes checked for uveitis. And, tonight is "shot night" for Mia when she gets home. Long day for my girl!
I would like to ask for prayer, not only for my kids, but for family friends who have a kid(s) currently dealing with uveitis in their eyes. It is a serious disease that, many times, goes hand-in-hand with uveitis. And, the treatment is not fun, for kids or parents. LOTS of steroid drops in the child's eyes to get the inflammation under control. And, shots, shots, shots.
I ask that you pray for these children. Pray for their parents - extra grace and peace for their families. Please pray for my friend Joanne and her son, Jacob. Today was a hard day for both of them as Jacob's uveitis is really bad right now. It's his worst uveitis flare ever. My heart goes out to them both.
Will keep you posted on Mia's and JJ's appointment....
Thank you to all who read this blog and to those who pray! This is an awful disease and, as a parent who with a child who has chronic pain almost every day of her little life, I can't tell you how much Mia and I just want this to be over.
Posted by Dana at 4:41 PM 0 comments! Leave yours here!
Thursday, January 10, 2013
Heading In The Right Direction!
These are my favorite kind of appointments! The kind when you see results. The kind where it is confirmed you made the right decision for your child. The kind where the doctor gives your child "two thumbs up!"
Dr. Miller was very happy with the progress Mia is making right now. She said all of her joints look great - quiet and calm! She did notice her hair is starting to thin, but reassured me it will grow back. BUT, while she had a rough start the first few weeks adjusting on methotrexate, she feels she is "starting to make the climb upward."
With that said, she thinks it is time to start weaning Mia off Indocin in the hopes we can get her down from two meds to only one - methotrexate. Mia has been on Indocin for over 2.5 years and since she was diagnosed at 22 months old, she has never not been on some type of NSAID.
This is a big deal. And, we are pretty happy!
While everyone is healthy in the house, she wants us to start skipping a dose of Indocin every third night for three weeks. If she does okay and doesn't complain of pain, then we can start to eliminate her night time dose altogether and just stick with the morning dose until we see her six weeks from now. Yes! Steps in the right direction!
Her blood work came back and she said everything looks great! However, there are still increased white blood cells in her urine. This is the second time she has told us this - the last urinalysis showed the same thing, but this time it is elevated even more. So, she wants us to repeat the urine test (for the third time) and get a culture done. Then she will call us with the results. She said, it could be the Indocin causing the increased white blood cells, but she is not sure.
After Dr. Miller did her routine physical exam with Mia, checking her range of motion and looking over her joints and taking measurements of the joints, she gave Mia "two thumbs up!" Mia was so excited that she decided to show Dr. Miller how she can do the splits now. It was pretty awesome!
Today, we are very thankful to God that we are heading in the right direction and seeing improvement in our daughter's body. Today, I am one happy Mom with one happy (and flexible!!) daughter!
“Your body will glow with health, your very bones will vibrate with life!”
Proverbs 3:8 (Msg.)
Posted by Dana at 4:16 PM 2 comments! Leave yours here!
Monday, January 07, 2013
No Resolutions. Just One Word!
Over the last year, I've read numerous "OneWord365" posts and tweets and thought, "Huh...that's pretty cool. Good for them!"
But, not for me. I don't have time. Too much going on with life.
So, one word. One word for me? What is my one focus for the next year? What would it possibly be?
For me, even during the hard times, laughing isn't too hard. In fact during my most tearful moments, I can usually manage to find something hilarious to laugh about.
Overcome.
1. To defeat (another) in competition or conflict; conquer.
2. To prevail over; surmount
3. To overpower, as with emotion; affect deeply.
Because, for me, "overcome" means overcoming some ugly stuff:
- fear
- anxiety
- stress
- self-doubt
- worry
- despair
- sacrificing my own needs/desires to please others
- insomnia
- health issues
- juvenile arthritis
- taking daily meds
- weekly injections
- side effects experience because of MTX injections (mouth sores and hair thinning/loss)
- physical and emotional pain
- fear
Posted by Dana at 5:06 PM 3 comments! Leave yours here!






