Heat

We have decided to weed Ava off her Prednisone which makes since. Ava has been on such a high dose for so long but all of sudden with the heat and humidity. Ava has not been able to walk long distances anymore and it is wearing out my little peanut. Ava has become extremely determine to push her little self. However it catches up to her and becomes to much. She starts to cry her knees hurt and slows down. My heart breaks for her, only if people knew. What this little angel is going threw. Ava has poly-articular but she always walks the fine line of systemic arthritis. We need to find a cure.

http://mansfield-ma.patch.com/articles/mansfield-child-fights-juvenile-arthritis-misdiagnosis

Donations

Team Ava is doing the Boston Arthritis walk to raise awarness for children and adults. We are going to walk 3 miles and want to raise $2,500. To help find a cure and to find better treatments for children like Ava. Please donate to our team and if you can join our team and spread the word!! "Kids get Arthritis too!!"
Please click on the link below to donate:
http://www.bostonarthritiswalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=424406&lis=1&kntae424406=1E895A50FFB340949A23B912C12627FA&supId=324027929&emaillogid=4386975931

New Medication

For the last two weeks or so Ava has been in a flare, we realized it got worse because we dropped her dosage in her steriod. We have now added an antinflammatory Meloxicam. It seems to be working but with the crazy humidity and then the sudden cold. Has made her worn out at times and feeling run down. We recently learned during the hot humid days that she is holding on to the heat.
  It was tough getting her out of bed in the last week or so and even off the couch. I hope soon the hot days are approaching with not to much humidity.

Ava's Story

 Over the past year and half, my daughter went from a happy, walking and playing little girl to a child who hated shoes, socks and suddenly couldn't move her knee and fingers. Over the summer of 2009 we thought Ava was a typical 1 1/2 year old who hated shoes and socks. But as the fall neared,  Ava consistently  had high temps often over 101, sometimes reaching over 103. My little girl was suddenly extremely tired and hated the cold weather.   I began to notice she wan not walking correctly, often dragging one leg behind the other.  We thought it was because she just wasn't used to wearing shoes and thought she would out grow this phase. We were also noticing that she was having trouble with her with her hands and fingers, she stopped bending them. She kept them pointing in a "C" shape with her thumb.   Ava consitently had  a runny nose, temp. and  sweats(even in the cold of New England). I was always calling her pediatrician. Always on antibiotics because her urine had white cells, and her lymph nodes behind her ears were swollen as well.
    Then suddenly in January of 2010, she stood up, screamed and tried to walk. Her knee gave out and popped out. She couldn't walk; we rushed her to an ER. They told us it was broken and put her in a splint. The next day we were seen by an Orthopedic doctor; telling us it was nothing. By this time, my little girl has been through so much. It continued this way till January of 2011. It happened again a year from the date, but worse. Her foot and knee were turned in and her knee had overgrown and looked like a grapefruit. Again, we saw the Orthopedic doctor. Once again more X-Rays. Again, telling us it was nothing. No longer taking these answers we went to the pediatrician. Ava's pediatrician referred us over to New England Medical Center. We did blood work, ultra sounds, X-Rays. It all came to light. Years of her having GI problems, temp, etc. and after doing her bone marrow test, she did not have cancer. 
      Ava had Polyarticular Juvenile  Rheumatoid Arthritis. We were seen by a specialist (Rheumatologist), Dr.Lopez. Now we were told what we would have to do. As her mother I was scared to know that my beautiful little girl was going to  have to go through so much. I would rather have Ava out of pain and be happy playing, running and jumping than a life with flares that seem to get worse and worse for her. Dr. Lopez informed us it will take time to figure out what works for her medication wise. We went through different kinds Naproxen, Indocin. Then we went to Prednisone, Fluoric Acid, and Methotrexate (injections chemotherapy); those 3 seem to calm her flares down. It did take time, but now it’s working.  We are weening her off the Prednisone, which is great news. 
     Ava is walking and jumping when it doesn't hurt. We had a very hard time finding Physical Therapy and Occupational Therapy for her age. I never gave up. I made many phone calls and finally found someone to help her. We enrolled her in gymnastics (which she loves) and it’s one of the best therapies, along with swimming at the local pool with her grandparents. Ava is getting back to being a happy little toddler, dressing up in fairy and princess clothes with her heels.