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Back to School: Kids and chronic illness

August 20, 2014

Going to school can be an exciting time for children and parents alike. But a parent’s joy can sometimes turn to worry, especially if their child needs special medications for a chronic illness.

Beth Russell-Smith, MSW, LICSW, a pediatric clinical social worker at Baystate Children’s Hospital, said there are some things a parent can do to ensure their child’s illness is under control while at school.

Establish a relationship between you, your child, and the school

"When a child with a chronic illness goes to school, they need to have someone they can trust other than their parents. I always tell children that the school nurse is going to be their new best friend," Russell-Smith said.

Some chronic illnesses such as asthma and diabetes will require the school nurse to take a more active role in your child’s health.

"Make an appointment with the school nurse and bring your child along to begin to establish this relationship with someone else they can trust. You will feel more relaxed while your child is at school knowing the nurse is familiar with your child’s illness and care needs, which could include understanding the use of inhalers or checking blood sugar levels," she added.

It’s also important that the nurse speak with your child’s pediatrician and secure orders and any special instructions for medications or treatments that may be required during the school day. The nurse should have what your child might need, such as equipment, medications, or snacks.

A secret is never safe

Don’t keep the new diagnosis a secret. Share it with others in the family, including grandparents, a special aunt, or others your child is close to. Share it with friends, too.

"You want others who your child trusts to be familiar with the treatment plan, so that they can work with the school nurse in your absence or support your child during a sleepover, for example. Sharing this information opens up your child’s world and expands your support network," Russell-Smith said.

Playing sports

Most children with a chronic disease still lead a normal life, such as playing sports.

"With your pediatrician’s okay, tell your child he or she can continue to play sports as long as he or she takes their medicine and follows any rules established by the doctor," Russell-Smith said. "You will need to inform the coach of your child’s diagnosis, symptoms to watch for, and how to respond."

For example, playing sports affects insulin absorption in diabetics or can trigger an asthma attack. So, it’s important that kids have their medicines and equipment with them, as well as a note from their doctor giving them permission to have them and take them as needed.

Always have an emergency action plan

Doctors should provide you with an action plan for your child that can be shared with the school nurse and other family members.

For example, an Asthma Action Plan describes the child’s daily treatment, such as what medicines must be taken and when. The plan also describes how to control asthma long term and how to deal with worsening symptoms, including when to call the doctor or go to the emergency room.

Know your child’s rights

Children with a chronic illness are eligible for protections under federal law.

Section 504 of the Rehabilitation Act of 1973 and Title II of the Americans with Disabilities Act prohibit discrimination on the basis of disability and allows for special accommodations for children with chronic illnesses. For a child with diabetes, that might mean additional access to the bathroom, water, the nurse, insulin, and snacks. The law also gives your child the right to immediate access to school work while out sick, and also provides for tutoring. The goal is to support both good health and academic success.

"This protection becomes increasingly important as your child gets older and their academic expectations are greater," said Russell-Smith.