Juvenile Rheumatoid Arthritis

Nuket 2014 Canada

My daughter had a bad fall on her knee when she was skating in 2011. Her knee did not completely heal. It was swollen for almost a year without any other issue or much complaint from her. Still we decided to take her to Rheumatologist. Blood test and everything, diagnosis was JIA with ANA being 1:160. ANA was the only unusual blood work by then. Honestly, I did not pay much attention as she was not complaining and I did not even know what JIA is. And, I was very very busy with work.

Doctor recommended a cortisone shot on the knee and that is what we did. The knee healed 80% but not totally. Then doctor prescribed NSAID without any tummy or gut protection. She took NSAID for two months, had some tummy problems, we stopped for a while and continue. No improvement, opposite, her ankle started getting inflamed after two years on the same leg.

Her RA also noticed her jaw swinging to one side and said it is TMJ, her ESR rate was 22 by then, above normal. She was getting worse on NSAIDs. Her ANA was still 1:160 positive, RF negative. Her doctor described stronger NSAIDs, but said it does not usually help so we might be ending up with MTX, no tummy or gut protection prescribed. The second NSAIDs really messed her tummy, she was always in pain, very tired and could only lie down with an ice pack on her tummy. We got tummy protection only when I called the hospital about it. My daughter’s leg was hurting and she started having morning stiffness. She could not attend summer camps that she was enrolled.

I was scared to death and start reading everything I found like crazy. I called a friend, who was non practising MD, had PS and treated himself with only diet. He said do not give MDX it is not a treatment, just controls symptoms and making things worse over the time. So, I put her on gluten free- meat free – dairy free diet with heavy probiotic.

Then, thanks GOD I found roadback site and went to Dr.K in Texas as our doctor refused to prescribe abx and showed me a paper talking about abx to change my mind. Dr.K prescribed abx. Her ESR was down to 5 with just a month on a diet. ANA positive. We also found a very good doctor in Ottawa supporting AP. Still, went to see Dr.F in California as well. Dr.F found vit D deficiency, mycoplasma infection and virus infection. Added joint support, immune support, transfer factor and 5000iu vit D to our treatment.
On this treatment, my daughter went through two strong herxings over the fall. Her joints improved slowly but steadily. First the heat was gone from her joints and then in 6 months, almost all swollen joints were back to normal. Blood reports during that time showed increase in antibodies against those infections then decrease. Her vit D level went from 23 to 34 and 46, Dr.F wants it above 50 at least. Her last ANA came back negative.

I am grateful to all individuals from this forum that I reached to get support while I was struggling to make a decision. Going against our original Rheumatologist recommendation was the hardest thing I did in my life. Believe me my life was not a breeze before. I am happy to pay back the kindness I received and answer any questions you might have for me.

May you all be healthy and stay healthy.

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