The diagnosis.

This is my first of many posts. Instead of emailing everyone (or intending to email everyone once I get a break from my very busy life), I have decided to create a blog to keep everyone updated on Mia's progress. The other purpose for this blog is to keep myself strengthened and encouraged.

So, let's start at the beginning. We’ve been noticing since Mia started walking this past June she has been limping on her left leg and it has been getting worse…to the point where she cries sometimes when she takes a step with her left leg. Back in October, her pediatrician recommended that we see a pediatric rheumatologist at New England Medical Center. So, we made an appointment and spent the entire day at NEMC where we met with a wonderful doctor - Dr. Lopez. Not only did he notice the swelling on her left knee and that she can not straighten her leg, but he also noticed that she has stiffness and swelling on her right ankle and her right elbow. He diagnosed her with Juvenile Rheumatoid Arthritis (JRA) - pauciarticular JRA to be more specific. JRA is an autoimmune disease, meaning that white blood cells lose the ability to tell the difference between the body's own healthy cells and harmful invaders like bacteria and viruses. The immune system, which is supposed to protect the body from these harmful invaders, instead releases chemicals that can damage healthy tissues and cause inflammation and pain. At that point our minds were spinning. How could this happen? Why did this happen? What now? What is the next step?

So, they did more x-rays, ultrasounds and lab work. The ultrasound showed there is fluid on all of the joints affected by the arthritis, but even more on her right ankle, her left knee, her right elbow and both of her wrists. Mia was quite the little trooper through it all (I just wish we had known we were going to be there all day…I would have brought more snacks!).

Some of you may recall we took Mia to NEMC back in March to have them look at her big toe on her right foot because it was swollen. They diagnosed her with macrodactyly, a disease that causes digits on your feet/hands to grow faster and larger than they should. However, they believe now that the cause of the swelling on her toe is a result of JRA. The doctor also wanted us to get her eyes checked immediately because JRA can cause a disease in the eyes called uveitis (an inflammation in the iris) which they say can lead to blindness. It is more common in girls than in boys. Mia had her eyes checked immediately, and PRAISE GOD, there isn't any inflammation (nor will there be!). She will need to have an eye exam every three months until she is 10 years old.

In addition to this, the doctor said she will need physical and occupational therapy three times a week and be on an anti-inflammatory meds twice a day. So, she started physical therapy immediately and she has been going for over a month now and she just started occupational therapy this week. She has PT twice a week and OT once a week. Her therapists are such wonderful and sweet people...Mia really enjoys spending time with them.

The day before Thanksgiving we took her back to NEMC for a follow-up appointment with the rheumatologist. Their main concern right now is her left knee and how it is hindering her from walking properly. So, next Wednesday we have to go back into Boston to have her fitted for a brace that she will have to wear while she sleeps at night. He said if they don't see some progress from the brace, the PT and OT, and from the meds that she will have to start steroid treatments in January. This is where my husband and I don't agree with the doctor. We think he should give the brace more than just a month to do its job (and Mia some time to get used to it). The steroid he wants to put her on is called methotrexate...and it has horrible side effects, such as hair loss, mouth sores, infertility, and it stunts your growth. So, we will discuss all of this with him the next time we meet and let him know where we stand with the steroid treatments.

Through it all, Mia has been such a trooper. After talking with a friend, whose daughter was diagnosed with the same horrific disease when she was 15 months old and is now JRA-free, we decided to try the same approach they took and we have eliminated gluten, dairy and eggs from Mia's diet. We did have her tested for food allergies and while the tests came back negative (which is a good thing!), it doesn't mean that those foods are beneficial to her joints or her immune system (JRA is a result of a weakened immune system which is attacking itself). So, after a month of being on a VERY healthy and restricted diet, we have seen GREAT improvement in Mia's joints. She has had one flare up which prohibited her from walking, which we believe was cause from eating something that wasn't apart of her diet plan, but so far she is doing great. Needless to say, I am a regular now at Trader Joe's and Whole Foods. :)

Please keep her in your prayers. We know that Mia is the healed of the Lord…from the top of her head to the soles of her feet! Despite the doctors’ reports, we know that our God is greater and that Mia’s joints function and move without any hindrance or pain!!