JFloyd's Blog | Looking for JRA families

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Looking for JRA families

Posted by: DeAnne Hoffmann on December 12, 2008 at 2:27AM EST

I'm new here and have a 9-year-old son who was diagnosed with polyarticular JRA almost 3 years ago. He's been treated with Naproxen, MTX, folic acid, Humira, Leflunomide, and Prednisolone...and now his Pedicatric Rheumatologist is suggesting Remicade and Leflunomide as our next step since things are worsening and we've had issues with previous treatment methods along with the fact that my son developed a "needle-phobia" thanks to these injections. I'm having a rough time finding anything encouraging posted anywhere I search on the web about any of these drugs they use to treat this disease....and then it seems every time I tune into TV or pick up a newspaper or magazine all I see are warnings which scares the heck out of me because I don't want to treat my son with anything that's going to create other problems (which we've already experienced with Humira). Since I started working for a chiropractor about 2 years ago, I've been exposed to a whole other world I never experienced before so am considering taking my son to a Naturopathic Doctor in addition to his PR. I've seen amazing things happen with patients at our office who are committed to chiropractic care and it just makes sense to me that our bodies are meant to heal themselves if given the right tools and conditions. I have nothing against the PRs, but my gut just doesn't feel good about these drugs...or maybe we just need to find another PR. Has anyone explored the naturopathic route?? Does anyone know where I can find testimonials of these drugs with kids...all I seem to find is adult info. I have so much to say, but want to keep this short....it would definitely be nice to have a support group or people to talk to, that's for sure.

~DeAnne

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(3) Comments

Posted by: crispycream on December 14, 2008 12:40PM EST

Hi. I have been diagnosed with JRA when I was 18 yrs old. I have been on Humira, Enbrel, Kineret, and so many meds. Now I'm on Rituxan.
I understand how hard it is to see your child suffer from this illness. My parents thought it was their fault for my suffering. But it is nobody's fault, other than we were meant to have this illness to become stronger people.
Please don't give up on this illness. There are so many meds that your child can try. Your child's future is very bright with so many researches on this illness. For me, I have received my BS in Early ED. and was a teacher and a Social Worker. Good luck!!!

Posted by: Isabel on December 15, 2008 9:52AM EST

Hi DeAnne!

I was diagnosed with RA at 13, which qualifies it as JRA, it just doesn't go away after you become an adult.

For such a young boy that seems like an awful lot of meds. I was bombarded with meds when I was first diagnosed and my body collapsed and I had convulsions.

I've never heard of a "Naturopathic Doctor," but if it is a natural, less-abrasive method that can offer your son relief and quality of life, then by all means try it.

As far as the support and outlet, you're in the right place. Best of luck to you and please keep us posted on his progress.

Posted by: Darlene on December 16, 2008 7:51PM EST

Hi, I am new here too. I dont have any information to share, my daughter is 20 months old and recently diagnosed with Polyarticular JRA, but I am definitely interested in making friends and finding information and support. Keep in touch!!