Lauren Davies had a desperate thought while stuck in traffic as she frantically drove upstate to reach her 19-year-old.
“If I drive on the shoulder and a cop stops me, will he believe me when I tell him I think my daughter’s dying in a hospital?”
The sophomore had fallen so ill from an out-of-control sinus infection that she was in a feverish stupor, unable to open her mouth, her face so swollen that a membrane was pressing on her brain after two rounds of antibiotics that didn’t work.
Davies, from Garden City, had another thought about scooping up her young adult: “In my mind, I just wanted her home. That’s where she was going to be.”
What could go wrong did go wrong for Leah Davies in 2011. Having turned 18, a legal adult when it comes to care providers sharing health information with parents, mom and dad were forced to the sidelines as doctors at home tried to convince the hospital in Syracuse to be more aggressive.
Heading off to school is stressful for young people on a variety of fronts. Among the biggest challenges is managing their own health far from home. And it can be a trial for parents, too, in this, the era of the helicopter parent when it comes to raising children.
Leah, now 22, took a semester off after her health ordeal.
Lisa Salberg in northern New Jersey is no helicopter parent, yet her 18-year-old ended up leaving school after the first semester of her freshman year at a Connecticut university.
The nurse practitioners at the campus health center took to shooing Becca off to the emergency room last year for the slightest sniffle because of a defibrillator implanted in her chest for a genetic condition that can lead to sudden cardiac arrest. She’s had the device since she was 10.
Both mothers said they had prepared their girls to speak up, handle health cards and fill out medical forms.
“She knew how to advocate for herself, but nobody was listening to her,” said Salberg, who founded the nonprofit Hypertrophic Cardiomyopathy Association, named for the disease both she and her daughter have.
“One nurse practitioner looked her in the eye and said, ‘I don’t know what to do with you. Your heart scares me.’ They kept telling her to go (to) the ER for nothing. Talk about instilling a lack of confidence. That’s exactly what happened,” Salberg said.
Becca, 19, is now happy living at home and attending school nearby.
Amanda Mroczek, 22, was diagnosed with cancer at 13. She finished treatment for Hodgkin’s lymphoma in 2006 but relapsed at 16, finishing treatment again in 2009. She went off to a Michigan university on two maintenance drugs and her scans have been clear since.
“I became a bit of a hypochondriac within the first couple of years in college, fearing another relapse,” she said. “It became really difficult to sometimes make sure I took my meds on time. You get distracted. You forget and the next day you realize, ‘Oh, shoot, I didn’t take them,’ ” said Mroczek, who still lives in Ann Arbor, where she went to undergraduate school, as she awaits word on her medical school applications.
Women’s health nurse practitioner Barbara Dehn in Los Altos has a busy practice with lots of teen girls. She has seen it all in 25 years and will soon send her 18-year-old son to college.
Med schedules are a recurring issue after campus drop-off, she said.
“A lot of kids I see have ADHD, anxiety disorders, OCD. Sometimes, with the stress of living away from home, they stop their meds, have more depression, more anxiety,” Dehn said.
Some tips from Dehn:
• Even if parents are providing full financial support they have no rights to academic or health information unless their child is gravely ill. Ask for a health care proxy, a health care durable power of attorney and/or an advance health care directive form if you want to be part of the process. Your over-18 child must agree.
“Oftentimes you don’t need carte blanche,” Dehn said. “In other words, you don’t want to know about sexually transmitted infections, but you do want to know things in the event of a car accident or a broken bone.”
• Visit the campus health center with your teen. Bring back a brochure and tape it to the back of the main door for easy access to telephone numbers, hours of service and emergency procedures. Go to the nearest off-campus pharmacy and urgent care facility so he knows how to fill prescriptions and where to go just in case.
• Check insurance policies to make sure such things as ambulance rides are covered.
• Keep doctors back home in the loop. Encourage your teen to give them a call with any questions.