CNS Vasculitis: Lifestyle Changes for School-Aged Children

CNS vasculitis and its treatment can affect your child's home and school life. For example:

  • Your child may have trouble swallowing pills.
  • He may forget to take his medicine at the right time.
  • He may need to miss school because of appointments.
  • He may feel sick when he is at school.

Your child will need help with the effects of treatment. This page discusses the changes in your child's life and suggests ways to cope. These suggestions come from children, teens, and parents who have experienced CNS vasculitis.

Your child may have trouble taking his medicine

Some children find pills hard to swallow

If your child has trouble swallowing his pills, ask to speak to the Child Life department of the hospital. A Child Life specialist can help children learn to swallow pills.

Some children forget to take their medicine

Here are some tips to help your child remember to take his medicine:

  • Set a watch with built-in alarms for yourself or your child.
  • Ask your child's teacher or school principal to help schedule time so your child can take his medicine in the middle of the school day.
  • Connect taking medicine with events that are part of your child's daily routine, like breakfast, brushing teeth, or bedtime.
  • Work out a reward system, like a chart with stickers that add up to different prizes.

Your child may have trouble with school

Your child may miss school

Children with CNS vasculitis often miss a lot of school because of hospital visits. Keep your child's school informed about your child's condition. This will help the school keep your child up to date on school work and in touch with his classmates.

Your child may feel sick at school

When your child is being treated for CNS vasculitis, even though he feels very sick, he may look healthy. This can make it harder for other children and teachers to remember that he is sick. Here are some tips to help:

  • Your child needs to tell people at school how he is feeling and if he needs help. This is called self-advocating.
  • You or your child could also find someone at school who can help support your child. This person could be an older student or a teacher.

Key points

  • Your child will need to take medicine for CNS vasculitis. He may find pills hard to swallow or he may forget to take his medicine.
  • Your child may have to miss school to go to the hospital. He may feel sick when he is at school.
  • If you or your child need help, speak to a member of the treatment team or to your child's teacher.

Susanne Benseler, MD

Holly Convery, RNEC, BScN