Almost half a million American kids live with epilepsy and another 10 to 20 million have a chronic illness. As these younger patients grow up, many will need to start treatment with adult specialists, putting them at risk of falling through the cracks. Ivanhoe has more on transitioning care and learning to live in an adult world.
Clara Hartman was in high school when she was diagnosed with epilepsy.
“I didn’t have my first grand mal seizure until I was 16ish, around there.” Clara says.
High school is tough enough for a teen and sometimes even tougher for kids with chronic illness.
Clara says, “I definitely drew back, kind of isolated myself.”
Doctor Emily Nurre leads a specialized program helping teens with epilepsy manage their condition.
“It’s a time for high, you know, no-shows, missing visits just because it’s all new to them. That can leave them open to gaps in care and gaps in getting their medications.” Explains Doctor Nurre.
Doctor Nurre suggests parents start moving their children toward a transition in care years before the change is actually necessary.
Doctor Nurre says, “Nationally it’s recommended to start around 12 for any kind of chronic illness.”
Encourage the child to interact with doctors independently. Encourage age-appropriate talks about concerns that are specific to teens and young adults, like driving … and family planning.
“They’ve been on a medicine that may have some birth defects if used in pregnancy. Then we bring that up and we talk about would you want to consider switching?” says Doctor Nurre.
For Clara, transitioning to a new doctor brought an additional challenge. Anxiety made it tough to initiate conversation.
“So, I had to get over that in order to communicate with my doctors.” Explains Clara.
Now, eight years later, Clara is almost completely seizure free, living on her own, and is studying to be a clinical psychologist to help other kids with chronic illnesses.
The University of Cincinnati developed the epilepsy transition clinic in 2019. Doctor Nurre says many of the steps they take to help teens adjust to their adult doctor can be applied to teens with other chronic conditions. Parents looking for additional tips to help their child transition their care can find more information on the child neurology foundation website.
Source: ky3.com, Jackie Garrity, Cyndy McGrath