Juvenile Rheumatoid Arthritis Support Group

Hi my name is Chris and my daughter Lindsey was just diagnosed with JRA. They are still doing tests to figure out what type she has and to make sure she doesn't have other things such as leukemia.

She is the baby of 6 children. When we decided to have children, we just hope that they are healthy. Now we have to figure out ways to manage their illnesses while managing ourselves. We have to be supportive of each other and help others get through their pain of having a sick child.

I will be here alot to try to make this group grow into something wonderful for all of us. I want to help educate people as much about this as possible while learning myself. If you have any questions, please PM me anytime! Thank you. Your friend, Chris

HI Chris

I saw that your daughter was just diagnosed. Our daughter was on IB for about a month and they transitioned her to methatrexate right away. I don't know where you live or what type of doc you currently have. We have found a great pediatric Rheumatologist in our area. Although I am told that they are difficult to find. However, You may want to try the Shriners. Yes the men with the funny hats. The organizations can lead you to a wonderful group of doctors in your area.

I'm just mentioning this because I don't know where you are with your daughter's care.

Hi, She had seen her pediatrician and then an orthopedic doctor. Then she was sent to a pediatric rheumatologist. She is wonderful! We live in Minnesota and she goes to Gillettes Childrens hospital.

We've only seen her once. She goes back tomorrow. She has to have more blood tests because last time they weren't able to get it. They poked through her arm! I got upset and wouldn't let them try again! Not until they got someone that knew what they were doing!

Thank you for the support!

Chris I forgot to tell you. We use a program through ECI for physical therapy. It's Early Childhood Intervention. Everyone qualifies for the service and your child will be evaluated for level of service. The therapists have given us great advice to keep her joints flexible and such. They also help develop your childs motor skills to improve the chances that they will retain these skills as they get older and reduce the effects of arthritis on the joint. You can also do this privately with a pediatric physical therapist but this service is usually free for just about everyone. They should have this program in Minnesota too.

Hi, How are you and your family?

Lindsey's doctors appointment didn't go so well. Her arthritis is worse. More swelling and more joints affected. They want to give her injections next week. They would put her to sleep, drain the fluid out of her joints, then put medication in them. Has your daughter ever had that done? I'm worried about them putting her to sleep. She is so little!!!

How does the methadextrate work for your daughter? They are going to put Lindsey on it after her surgery on tuesday.

Thank you for the information. I will look into this and see if we can get her into one of the programs. How do you deal with all of this emotionally? I'm just a basket case some of the time.

I hope that you are doing well!! Talk to you soon, Chris

-Hello. My daughter was diagnoses on 12/3/08. They believe 5 joints are affected. she is 2 years old. Would you please call me on my cell phone as soon as possible. I feel like I am going crazy.

Jennifer Jones 609-432-5654