The transformation of your child from a young and vulnerable kid with arthritis to independent adult begins the day your child is diagnosed. Part of that journey for your child is learning to become a wise health-care consumer in charge of her own medical care and choices. Though the transition takes work and time, experts and families who have been there say, fear not – you can do it.
Each child goes through the process at his or her own pace, says Kathleen M. O’Neil, MD, associate professor of pediatrics in the division of rheumatology at the University of Oklahoma School of Medicine in Oklahoma City. A number of factors, including your child’s disease severity, personality and level of development, will influence that pace. But there are milestones parents can expect and behaviors they can encourage to promote their child’s independence, says Dr. O’Neil.
Here’s a look at what you and your child should be doing – at each stage – to make the transition from child to adult medical care.
Preschool to Elementary School
Children who grow into confident young adults often remember being encouraged to take a role in their arthritis treatment early on.
“I remember one time the doctor asked me to leave the room so he could discuss treatment with my parents,” says Michelle Solomon, 36, who was diagnosed with juvenile rheumatoid arthritis (JRA) – now called juvenile idiopathic arthritis – shortly before her fourth birthday. “My mother said ‘no,’ I did not have to leave the room because I was the one with arthritis, so I should have a say in the treatment.”
From the time 19-year-old Rebecca Halsey was diagnosed with systemic-onset JRA at age 8, she knew to take her nonsteroidal anti-inflammatory drug with meals to minimize stomach upset, says her mother, Teri Halsey of Wichita Falls, Texas.
“In the morning she would finish breakfast and come tell us, ‘It’s time for my medicine.’ At night, after dinner, it would be, ‘OK, I have finished my dinner – it’s time for my medicine.’”
Though your inclination may be to protect your child or to do everything for her, children should be involved, as much as is appropriate, in treatment decisions and responsibility for the day-to-day taking of medications, says Dr. O’Neil.
Preteen to Young Teen
By the time a child reaches the double-digits, he should be able to learn the names of his medications, the number of milligrams in each dose and the number of doses each day, says Dr. O’Neil.
“When I think [kids] should be able to do that, I ask them what medications they are taking when they come into the clinic. If they don’t know, I kind of rib them a little. I say, ‘Wait a minute, who’s sick here? Does your mom have arthritis? No, you do. How come you don’t know what you’re taking?’ ”
Empowering children with an understanding of arthritis and its management is particularly important in the adolescent years, says Dr. O’Neil. She explains that kids at this age may have trouble accepting that that others can determine for them that they must take medicine.
Once a child knows the names and dosages of medications, he can begin to be responsible for taking them. At first, this may involve reminding the child that it is time for medication or taking it in your presence. Later it may mean you lay out a week’s supply of medicine each Sunday night and then check the following Sunday to be sure all of the medicine has been taken.
“If you try to shove it down their throat, it’s not going to work,” says Dr. O’Neil. “However, if you tell them that you trust them to do their own care with a little help from mom and dad, I think that’s real important as soon as the child is able to do that.”
At this stage, too, your child may want the privacy of seeing or speaking to the doctor alone. “Some are embarrassed and have a specific question and want the parent out of the room – usually somewhere in the 13 to 15 range,” says Dr. O’Neil.
Usually by the time a child is 15, Dr. O’Neil asks the child if it’s OK to have the parent in the room during the exam. Often, she talks with the teen alone and then calls the parent back in after the exam. “It takes a little longer, but I think it is better in the long run,” she says.
Older Teen to Young Adult
By the time an adolescent reaches her mid-teens, she should not only be taking her own medications, she should also be able to start making her own calls to the doctor.
“I think it is important if the kid has a flare to call the doctor while mom or dad stands by, but then it’s appropriate to hand to the phone to a parent so the plan can be made,” says Dr. O’Neil.
When a child turns 18, she is an adult in the legal system and can sign herself in and out of the doctor’s office. If she is driving, she may be making her own appointments and driving herself to them. Or she may want you to be with her, and that’s fine. In fact, doctors often advise having another adult along when speaking with the doctor, especially if you will be receiving instructions about a new diagnosis, surgery or a change in treatment plan.
Even though her daughter Leslie is 25 now and is living on her own, Ann Huffman of Wichita Falls, Texas, still goes to her doctor’s appointments with her daughter. The two compare notes about the doctor’s instructions and then do something enjoyable together afterwards.
The tradition started when Leslie was diagnosed with JRA at age 11. “We would always stop at McDonald’s after the doctor,” says Huffman. “No matter what time of day it was, it was something we did together. We continue to have doctor days and try to do something special but we’ve upgraded from McDonald’s.”
One of the biggest changes your teen will face is moving from a pediatric rheumatologist to an internist/adult rheumatologist. It’s a transition that can be challenging in itself but as with other transitions, it is a necessary one. (See Making Move to Adult Rheumatologist)
An Awesome Accomplishment
Overall, keeping a positive attitude is an important strategy when making these changes and transitions.
“To do it as a positive rather than a punishment is really important,” says Dr. O’Neil. “Make it something the child is proud of, ‘Yeah, I have arthritis, but I take really good care of my arthritis. I do stuff most kids couldn’t do.’”