When you no longer manage your child’s health
At 2, my son Shawn was diagnosed with asthma, and thus began our endless trips to the pediatrician whenever he had an attack.
Every cold or change in the weather precipitated a visit to the pediatrician to add or change the medications that would help him breathe easier.
Many nights I would have to wake him every four hours for breathing treatments. I spent years juggling medications, worrying if he would have to be hospitalized, and making sure he had whatever he needed to keep his asthma under control.
So it came as quite a shock when I called the pediatrician’s office one day to ask about a change in my son’s medications and I was told they could no longer talk with me.
Shawn had turned 18, which meant he was no longer a minor. And by law, I was no longer in charge of his health.
Parents who have children with chronic diseases are used to being the primary advocate for their health and wellbeing. When that ends, the transition can be challenging, even life changing, for parent and child alike.
In my own case, I knew that our pediatrician and staff were well acquainted with Shawn’s needs and treatment plans.
During his teen years, I still accompanied him to his annual exams, but I always left the room before the physical part of the exam to let him speak privately with his pediatrician.
Looking back, I wished I had talked more with Shawn and his pediatrician about how to prepare him—and me—for a transition to an adult primary care physician.
First, there’s the paperwork and as most parents do, I always handled everything. So when it came time to see his new doctor, Shawn asked me to go with him to help him complete all the new patient forms.
Secondly, changes in health care reform mean that children can remain on their parents’ insurance coverage until age 26. But parents still cannot directly advocate or ask questions of the primary physician.
Because of Shawn’s chronic asthma, he wanted me to be able to continue to assist him with decisions about his health challenges. He signed paperwork granting me permission to speak with his primary care doctor or the office staff, as well as the campus health staff when he went to college.
He also completed paperwork to make me his health care proxy, something I hadn’t really considered until I needed to do it for myself.
There were small transitions, too. Shawn was used to seeing his pediatrician for frequent follow-ups on his asthma. Now, he only goes to his current doctor when he feels sick.
“The nicest thing about going to a pediatrician was he took the time to talk with me, did his best to make the situation a positive one and reassured me that I was going to get better,” Shawn said.
Shawn’s pediatrician would explain why he was sick, how he would feel while he was sick and how long it would take to get better.
“When I go to [my adult doctor], he tells me what I need to do to get better and to call in a couple of days if I’m not,” he said.
Today, Shawn is out of college, working full time and doing well, keeping his asthma under control with his current medications. He knows his medications and has learned to be an advocate for himself.
At times, I still worry. But Shawn knows how to take charge of his medical care, especially when he is ill, and how to take the necessary steps to prevent his asthma from getting out of control.