Is it alternative medicine--or neglect?

An intriguing article in the New York Times about a Connecticut mother who refused surgery for her daughter and has been charged with child neglect. The child, age 14, has severe JRA and doctors say that without surgery, she will never walk again.

What do you think? Did the state of Connecticut overstep its authority, or did it act in the child’s best interest?

Finding a doctor can be difficult

Rheumatologists usually deal with adults. Because they are still growing, treating children can be more complicated. Finding a pediatric rheumatologist for your child can make a big difference.

This article in USA Today talks about the hardships endured by people who live far from the nearest specialist. Share your personal stories, or post helpful links for finding a specialist near you.

Political activism: Kids can make a difference

Eric Terry, fourth grader, basketball lover, and JRA patient went with his parents to Capitol Hill to talk about the need for more JRA research.

Read his story in the Washington Post, and post your own links about people who raise public awareness.

Inspiring athlete with JRA

Lauren Lingle, 17, plays varsity water polo at Fountain Valley High School in California. She also has Juvenile Rheumatoid Arthritis. The Arthritis Foundation has asked her to be their spokesperson for JRA.

Read her inspiring story in the Los Angeles Times and post your own links and stories about athletes who persevere despite the obstacles of JRA.

A century of joy for disabled children

Inspiring article in the New York Times about a group of people in South Hampton, NY who run a camp for disabled children, including those with JRA.

We’d like to hear your stories about people who help kids with JRA enjoy life to the fullest. Post comments, links to similar articles or just your personal stories here.

FDA approves adult RA drugs for children

Celebrex, Enbrel, and the cancer drug Mexotrexate are all standard treatments for adults with rheumatoid arthritis. They have also been approved for use on children in the last two years. What have your experiences been? Note: Comments here are NOT a substitute for a physician’s advice. Consult your child’s doctor before giving him or her ANY medication.

The cost of JRA

According to an article in the Montreal Gazette (2/1/07), Canadian families who have children with JRA incur an average of $1,241 in salary losses for having to take their children to see medical specialists. They also end up paying at least $2000 a year in medication deductibles.
In the United states, a 2006 study found that children with JRA who rely on Medicare fared much worse than those with private insurance. They had higher rates of disability and a lower health related quality of life. Read the full article.

Even families with private insurance in the U.S. are often “under-insured,” that is, their insurance plans have strict limits on physical therapy and higher co-pays for visits to specialists.

What have your experiences been? Comment on them and let us know if you’ve found organizations that can help. Share ways you’ve found to cut down on medical expenses without compromising care.