Parents of children who have a chronic disease eventually come to a crossroads. While the young adult is home, parents can oversee medications and doctor visits. They can keep an eye on what a child eats, how much sleep they get and whether they’re taking risks with their health.
But the day arrives when that child heads for college or otherwise slips beyond parental range. Moms and dads hand off the job of disease management to a young person, newly on their own.
“It is just a hard line, even with a regular kid,” says Monica, whose daughter Amanda was diagnosed with common variable immune deficiency (CVID) in her senior year of high school. “But a kid with a chronic illness, to let them make their own mistakes? Letting go takes on such a greater risk of fatality.”
CVID is one of 450+ primary immune deficiency diseases, which makes a person more vulnerable to serious infections.
From the student’s perspective, college is a time to let young people step up and take responsibility for their health.
“For parents of those with severe health issues, it is easy to get very involved in their care,” says Jessica, 23, a recent college graduate who was diagnosed at 13 with CVID. If the student needs help with infusions or gets sick, the student will likely welcome mom and dad’s guidance. Otherwise, “It is important to give the kid independence.”
Here are five tips for freshman year designed to keep the student well, and parents relatively calm. For starters: Once your teen selects a college or university, get to work.
“(My daughter) Amanda was accepted to her school in May and college classes started at the end of August. It took that long to set everything up,” Monica said.
1) Turn to the Immune Deficiency Foundation for support with the college transition. Monica, Amanda and Jessica relied on advice from the Immune Deficiency Foundation (IDF) and a therapist who specializes in primary immunodeficiencies. That support helped them understand what to expect, emotionally and physically. Amanda’s immunologist was a key player and all decisions on her care went through him. Her school was far from home, so her immunologist helped find nearby physicians. Monica even found a pharmacy that delivered in Amanda’s hometown, and in her college town.
Diagnosed at 13, Jessica and her family already had a handle on coping with CVID, its symptoms and how to treat it. Amanda had less time to adjust before college. She was diagnosed at 17 after being admitted to an ICU, on the verge of sepsis.
“She wasn’t keeping her saliva down,” Monica said. Once the hospital ran an immune panel and diagnosed the CVID, she was discharged a few days later.
Data show that students with a new diagnosis – who are less adjusted to managing it – have more difficulty getting involved with school activities, have more physical symptoms and more relationship issues with their peers.
2) Do the paperwork before leaving for college. The Health Insurance Portability and Accountability Act (HIPAA) was intended to protect personal information about health and those individual rights snap into place when someone is 18. Being someone’s parent doesn’t grant automatic access to their medical info, but an adult child can allow parents access if they sign a release form.
Under the Americans with Disabilities Act, (ADA), any school that receives federal funding is required to accommodate a person with disabilities. These accommodations are listed in what’s called a 504 document. These accommodations can include having a nurse come to the dorm or apartment – Monica’s daughter received her infusions weekly from a nurse – or receiving extra time for tests. But not all schools treat chronically ill students the same way. Jessica said her school was responsive to her needs, Amanda’s school stalled on requests, Monica says.
Document medical history, including medications, doctor’s names and hospitalizations. Organize medical documentation, including prescriptions and other records, in case you need them later. for future reference. Also create, and keep updated, a document listing medications, other health care conditions and physicians. The IDF recommends naming a medical power of attorney. This person can make medical decisions for the student if and when necessary.
3) Agree to a few musts, like wearing a medical alert bracelet and storing emergency info on the phone. Amanda’s mother and her immunologist insisted she wear a medical alert bracelet, which will alert emergency responders to her condition. Other items that Amanda carried: masks, a medical insurance card and hand sanitizer. Jessica kept all her information in the emergency section on her phone.
4)Anticipate emotional questions, like whether to tell roommates and others about the illness. Jessica went to school during the pandemic, but she didn't tell other students, even her roommates, about her CVID. She wasn’t close enough with them, she said.
“I learned how to manage it on my own and how to balance that with life. I still don’t tell people right out about it,” Jessica said.
Amanda also didn’t want to tell people either her condition – she fought Monica on the medical alert bracelet. She just wanted to fit in.
“But as she gained trust and got closer to everybody, she started to tell people,” Monica said.
Jodi Taub, a licensed therapist in New York City who has worked with IDF groups of young people making this transition, advises them to “have a predetermined statement, so that they are not caught off guard” if someone asks about their health.
5) Expect an adjustment period while the student assumes responsibility for matters large and small. For instance, young adults don’t always manage their self-care, such as healthy eating and adequate sleep. Jessica says she learned in high school how important sleep was to her routine. Amanda, on the other hand, fainted in class because she was pushing herself too hard. She would forget to eat, her mother says.
On the big questions, a chronic condition means adjusting to the limitations of illness and how it will impact career and life aspirations. Both young women were stage performers in high school – Jessica, competitive dance, Amanda, musical theater – and they wanted to turn their talent into careers. But having a health condition can some dreams more difficult to realize or put them out of reach.
Fortunately, patients can find help and support as they move through the experience of being a young adult. Consult the Immune Deficiency Foundation Guide for Young Adults and watch the IDF’s events page for special weekend meet-ups for teen and young adults.
