Don’t hesitate to negotiate with the doctor for something your child really wants to do. Seventeen-year-old Lisa Dombeck and her mom, Lucy, from Springfield, Mass. talked with Dr. Rothman so that Lisa, who has polyarticular rheumatoid arthritis, could take a dance class. They found a dance studio willing to work with Lisa, Dr. Rothman explained Lisa’s restrictions to the dance instructors and Lisa got to dance. Likewise, Cynthia negotiated with her mother and Dr. White to play soccer, a concern since sun exposure can cause Cynthia’s lupus to flare. She followed the doctor’s advice about sun protection, was careful to watch for signs of a flare and had a great season.

Children Should be Seen and Heard

At a recent juvenile arthritis conference, Robbins talked with the mom of a 2-and-a-half-year-old with arthritis. The boy had questions about his arthritis and the mom thought her son was too young to ask his doctor those questions.

“I told her I don’t think you can ever start young enough,” says Robbins. “The sooner you start helping your child to voice their opinions and concerns, the easier it will be when they get older.”

And while parents provide essential information about their child’s health, a dialogue between child and physician, geared to the child’s age, is also vital. “I have found that even very young children, 5, 6, and 7, can tell me what’s bothering them. And, it’s really important for them to start talking directly to me because even their parents are sometimes surprised by what they say,” says Dr. Rothman.

In-between Appointments

E-mail is being used increasingly between physicians and patients but its use varies by doctor, and it’s certainly not a given. E-mail communication is not secure and some health care systems don’t let physicians answer clinical questions via e-mail. But it can be a quick way to get simple, straightforward questions answered or to send lab results as the Kanes do. Kids love technology and patients have even sent Dr. White one-minute videos of their questions over videophone. If you’d like to use e-mail, ask your doctor if it’s an option.

There may also be some questions that come up between visits that you need to know how to get answers to immediately. 

Room for Improvement

What can you do if communication isn't so good between you, your child and your child’s doctor? First, figure out if you're asking the right questions to get the answers you want. Be confident enough to ask for further explanation if you don’t understand or agree with something. Lisa Dombeck advises kids to “ask questions because no matter how small you think the question is, it will make a difference.”

With pediatric rheumatologists in short supply, it may not be that easy to switch doctors.

Before taking that path, you may want to meet with your doctor to address the problems in a non-confrontational way. Discuss what’s not working and bring suggestions for improving the situation as you might in any negotiation.

“I see this as a team and a team is all about negotiation,” says Dr. White. And when the team goal is the healthiest and fullest life possible for the young person, that’s certainly worthy of negotiation.