Start This Many Years Before College (Around Age 10-12 Years Old)
- Increase the child’s knowledge of the disease, the treatments and the complications if the disease is not controlled.
- Web-based tools are a good resource for this.
- Teach your child how to prepare for a doctor’s visit.
- A few weeks before the visit start writing down questions for the provider. 1 or 2 nights before the appointment choose the most important questions and write (or type) them for review at the appointment.
- Learn the names and doses of each medication.
- Learn the purpose of each medication?
- Is there a difference between a daily ‘controller’ medication and a ‘rescue’ medication?
- How does the medication impact the disease?
- Learn the most common complications of each medication.
- Educate your child about a written treatment plan?
- i.e. Food Allergy Action Plan, Asthma Action Plan, Diabetes management plan, etc.
- Make a binder of information with a section for clinic notes, lab work, breathing tests and imaging scans. As it is age-appropriate let them take responsibility for this binder.
Two Years Before College:
- While researching schools find out about the Student Health Center and the office for disability services.
- When taking a tour of the school walk into the Health Center and get a feel for the environment. Do the staff seem friendly or anxious and rushed? Is the environment welcoming?
- Many health centers are staffed by experts in adolescent health. This training is valuable in helping adolescents transition into the college experience and the ‘classic’ challenges of mental health, reproductive health, drugs/alcohol and social issues. However, managing chronic diseases like asthma, diabetes, arthritis, or cystic fibrosis should be managed in conjunction with a board-certified specialist.
- Find out about clubs or support groups for other kids with chronic illness.
- This may be within the university or in the broader community.
- Begin the process of collecting health information from current providers.
- Review the binder of information with sections for clinic notes, lab work, breathing and other tests and imaging scans.
- It is very valuable to providers if individuals can bring the most recent health information to an appointment so it can be copied into the medical record. This is generally more reliable than the traditional route of filling out a transfer of medical information waiver.
- Review your health insurance to be sure your child is covered if leaving the state/region to go to college.
- Plan to change/upgrade the health insurance if there are problems with coverage.
- Be sure vaccines are up to date.
- I’m a fan of vaccines. Get them all. Its a no-brainer.
When You Choose A School:
There seems to be a tendency for students to continue to use their ‘home’ doctor when they leave for college. This can work in some cases, but it can also be a liability. As a doctor I have met many students for the first time due to an asthma attack or after a severe reaction to a food allergen. I have also been contacted by parents of some of my patients after the child has moved away and started college. It’s valuable to have a relationship with local providers and to keep the home doctor.
- Make an appointment at the Student Health Center.
- If needed visit the office of disability services.
- Find out who the health center uses for specialty care. They may be connected to an academic medical center or private specialty practices.
- Is it convenient to get there? Any barriers to making and keeping an appointment should be minimized.
- Ask if the electronic medical records can share information. This can make sharing information like results and clinic notes much easier.
- Make an appointment with a specialist and discuss the current disease management plan.
- Work through the process of writing down questions. If I get sick who do I contact? Where do I go if I get sick ‘after hours?’
3-6 Months Before Orientation:
- Make an appointment with your home provider to be sure that medications and refills are ready to go.
- Make appointments with medical providers at the college or town you will be moving to.
- Take all mailing addresses and contact information to each appointment.
- Be clear that all notes and information should be shared among the primary care and specialists involved in your child’s care.
- Address the importance of creating a ‘Health Team’ at the school.
- The ‘Health Team’ should be anyone who needs to know about the disease and possibly the use of medications.
- Discuss who needs to know about the disease, i.e., resident advisor, roommate, professors, or others.
- Discuss how to bring this up with them. Be sure that they would be willing to use a ‘rescue’ medicine if needed (like injectable epinephrine for a severe food allergy reaction).
- Consider the legal aspects of your child’s HIPAA (Health Insurance Portability and Accountability Act) rights.
- Do you need a HIPAA waiver for information?
- Do you want to get ALL of the information from your adolescent’s doctor’s appointments? Does he/she want you to have access to this?
- Do you need a Durable Medical Power of Attorney?
- Seek the support group schedule in the college or town.
- Groups like the Juvenile Diabetes Research Foundation or Epilepsy foundation can be great resources. Try to time a visit to attend a meeting together.
Once You Start School:
- Practice excellent hygiene:
- Living in a communal or dorm-style situation is a great opportunity for social development but it can also be a Petri dish of viral and bacterial exposures.
- Recognize early signs of infection:
- Understand how this can complicate the disease.
- Pace yourself:
- The physical and emotional stress of the college experience is tough with or without a chronic disease to manage. Consider taking a lighter load of classes in the first semester while you adjust to the college lifestyle.
- Don’t change your treatment:
- You may be feeling great and consider trying to stop or change some of your treatments. The desire to reduce or eliminate medications is normal. The desire to be independent of external measures like medicines to achieve health is normal. But, experimenting at the onset of college is the wrong time. Don’t do it. Wait. Talk with ALL of your providers about your personal health goals. Include the health care providers in the decision process and get educated about what lifestyle changes, fitness or nutrition goals could help achieve this goal. If it is safe and you’ve built a good relationship with your providers then trying alternative treatments is reasonable. Most chronic disease can be monitored during changes in therapy. Agree to commit to regular evaluations like lab or breathing tests to monitor if changes are safe and effective. If they are not safe and effective then you have to be open-minded about going back on the therapies that have worked.
This article was recently edited. Originally published August 15, 2017.
The legal aspects regarding your adolescent’s private health information can not be ignored. At the bare minimum you should discuss this before the first visit to the Student Health Center. Enabling communication between the healthThere should be a HIPAA waiver of information so that chart notes, labs and other information could be shared.