She was perfect in every way. Our beautiful baby girl. Did all the right things at all the right times, and did them so very well. Never fussed, rarely cried, a joy in every way. From crawling to standing to walking to running….She was 18 months old, woke up with a swollen right knee…couldn’t, wouldn’t put any weight on it…..couldn’t, wouldn’t walk…..as they day went on she would be able to walk again..with a limp..and unsteady. How can an 18 month old tell us what’s wrong?
Remember the great Kurt Vonnegut? And so it goes. If you’re reading this you know the sad drill ..the doctors..the x-rays ..the blood work…more doctors..more x-rays..more blood work….We were hoping that it was an injury….the first doctor that said “juvenile rheumatoid arthritis” had to tell me twice…old people get arthritis..not my beautiful perfect baby girl….The second opinion doc thought she saw a fracture… aha! an Injury! Not arthritis! As the full leg cast went on her leg I watched them encase her knee in plaster and I felt this sense of dread…..For the next 6 weeks, as she wore the cast..you could see her personality change. She was in pain. The binkie came back. The blankie came back. Thankfully the cast came off….but she dragged the leg behind her like a broken wing..she could only crawl. The doctor said she would have to relearn how to walk….but that didn’t happen. She couldn’t stand up. Her muscles had atrophied. Then her toes swelled up….No injury, juvenile rheumatoid arthritis, JRA. (now called JIA) And so it goes.
If you’re reading this then you did all the same research that we did. Weren’t you AMAZED when you found the work of Dr Brown (bless his sweet soul) and that he was RIGHT!!!!! Over the next year we saw 13 doctors (rheumatologists, physiologists, orthopedists, pediatricians, chiropractors, acupunturists….) in 4 states! NO ONE would give us the antibiotic treatment!!! What really was most annoying to me was that ALL of the rheumatologists KNEW exactly of Dr. Brown’s work..and they ALL pooh-poohed it. They should be ashamed of themselves..(all the way to the bank..)…Meanwhile our little girl was getting worse and worse…more joints affected. She couldn’t stand on her own two feet for over a year. In addition to the doctors there were endless sessions of physical therapy, occupational therapy and evaluations upon evaluations to get early intervention services to help. Many of the docs we saw and the tests we took were out of pocket expenses..it was considerable. Saying no to methotrexate and Enbrel was one thing at the beginning of our journey..but .saying no, one year later after 13 docs , thousands of dollars and a child that would have to crawl around her almost 3 year old friends…well…that was another thing indeed. This board and the people here made me stay the course. You can search “Toddler with JRA ” and read my agonizing words when we were right in the middle…
The 14th doctor we saw, with my binder of records…finally, finally, finally..told us that it was indeed infectious in nature and started her on a course of antibiotics (Zithromax and amoxicillin) along with a small dose of prednisone (even Dr Brown said it can be used to reduce inflammation and allow the abx to work). Yes, she got worse before she got better. She was on the treatment for over a year…. 18 months to the day after my 18 month old got sick, my now 3 year old, perfect in every way, beautiful baby girl took her first steps in her classroom. Those steps meant as much to me as her first baby steps….
I skipped many of the details in this narrative..but..know..this treatment WORKS!!! It worked for us and we had a long road back.Our daughter is starting kindergarten next month, she still has a slight contracture in her knee and wrist..but no one notices them unless I tell them. Please..follow your intuition that led you here. If you have a child that is suffering and you need advice I am always happy to share our journey and let you know that your child can and will also get better through this treatment. (the moderators will guide you to me)….. They are amazing people and I thank them all for all they did for us. And say a prayer for the amazing Dr Brown. This is the right road.