Students with vasculitis

SOME GUIDELINES FOR PARENTS OF STUDENTS WITH VASCULITIS

2 April 2009

If the student is on daily chemo pills, the effects of this will probably still be 2-4 weeks from the start of treatment before the side effects become fully evident.

Side effects can vary greatly: fatigue, hyperactivity, nausea, hunger, sleeplessness, irritability, etc.

Prepare a list of questions before each appointment.
If possible, have two adults at the doctor’s appointments and write down answers.
Remind your student: “How do you eat an elephant?... One bite at a time.”

The child should be encouraged to take each day as it comes and don't worry about tomorrow.

Immunosuppressed persons should avoid crowded indoor places and take care to sanitize their hands before touching food or face.

The HIPPA law guarantees insurance coverage if moving from one group policy to another group policy without a significant gap.
It basically allows you to use the time you were on the first insurance policy to avoid triggering a pre-existing condition clause on the second policy.

Ask physician’s offices and labs for their medical release form to get copies of all medical records and lab test results and imaging reports.
Learn enough to look them over and understand the basics of what they mean.
In the U.S.A. by law, they have to provide you copies of the records upon request, although you probably will have to fill out a form.

Work with the school ahead of time to help the student have a situation that works for the student.
Mention HIPPA in your discussions. That law requires that students be educated to their full ability regardless of disabilities.
Have the child’s teachers explain to their classes about the situation and let the students know that the affected student may be wearing a mask to prevent getting infection from classmates and is the child is not infectious.
Teachers can be asked to sterilize the desks and classroom with appropriate sanitizers.
Have your child carry and use hand sanitizers especially before handling food or touching their face.
A 504 plan is an accommodation plan for students that can’t progress adequately in the standard school environment.

If you need this for your student, you can initiate the procedures with a formal request. You don’t have to wait for the school district to start the process.
The 504 plan requires a formal meeting with the parents and/or child, doctors, and school district to determine what can be maintained from the normal school day and what accommodations must be made in attendance, allowing rest as needed, arrange special make-up testing schedules.

If a student needs tutoring at home, the 504 plan will be required because the district would need it in order to be reimbursed for the home tutor.

College students should work with their Office of Academic Services to arrange schedules and any special considerations regarding attendance, school work, and exams.
Some college students may have to drop to a lower class load, or even skip a term/semester.
Your student will have to grant permission for you to see their medical information once they are legally adult.