For parents sending their kids back to school, a whole sea of questions must be answered about COVID-19 and the Delta variant. Moms and dads are deciphering federal, state and local school health guidelines and figuring out which masks to buy.
For parents whose kids also manage rare and serious conditions, COVID-19 adds a complicating layer. The best first step is to consult your child’s pediatrician, said Alison Tribble, M.D., a pediatric infectious disease specialist at Michigan Medicine C.S. Mott Children’s Hospital. They will know your student’s situation best and can make recommendations, she said in an article for Michigan Health.
"The definition of safe is going to be different for every family and every situation,” Tribble said. “It’s really about assessing the risks and benefits of the given situation and making a decision that’s the right fit for each family."
If your child already has a health condition, the usual health and medical concerns haven’t gone away and now must be navigated amid the continuing pandemic. A new school year means it’s time to explain your child’s condition and needs to teachers, administrators and school nurses.
Want to get prepared? Try these tips from Cheryl French who has the rare disease hereditary angioedema (HAE) and is raising children who also have the rare condition. HAE causes unpredictable, and potentially life-threatening, swelling episodes.
- Ask your child’s doctor for a diagnosis letter. This can be sent to the school so that your child’s condition is verified and on the record in writing. The doctor can detail your child’s needs, including medication requirements.
- Get medical alert bracelets so your child has this ID at all times. These bracelets can communicate a lot of info, including diagnosis, doctor’s name and health care plan.
- Include your child as an important member of the care team. He or she can be given an age-appropriate amount of responsibility and can learn to self-advocate. For instance, even a younger child can share the basics about their condition and should know the procedure for telling a teacher or nurse that they don’t feel well.
“Arm yourself with all of the information you can and all of the helpful tools that you can, because you will be the first line of defense for your child’s care,” French said.
Patient organizations are a good place to start. Here are some school guides offered by advocacy groups.
Study Life from the U.S. Hereditary Angioedema Association
Hemophilia Fact Sheet for Teachers
It can be tough for parents to hand over a child’s care and safety to teachers and other school officials. Shonda Joshua has been through that many times over, raising her son Michael, who has hemophilia and is now an adult. Joshua has led educational sessions for other parents and stresses the importance of excellent, professional communication. Get her advice on how to do it.