Back to school with sickle cell: what to share with the school nurse

Start with the school nurse

The school nurse is often the first person who will see your child on a hard day. The National Heart, Lung and Blood Institute advises parents whose child attends day care, preschool or school to talk with the teacher about the disease, because teachers need to know what to watch for and how to accommodate your child. The nurse belongs in that same conversation.

Keep it practical. The goal is that the adults around your child know who to call, what to look for, and what your child is allowed to do to stay comfortable.

What to share

Write down the names and phone numbers of your child's care team. Describe what a pain crisis can look like for your child, in your own words. The association's site notes that pain crises can happen at any time and can be triggered by extreme dehydration, heat, cold or other environmental factors, so water and temperature are worth raising early.

Ask how your child can keep water close during the day, what happens at recess on very hot or very cold days, and how sports and gym class will work. NHLBI also lists sudden changes in temperature as a common trigger, which is one reason swimming deserves its own question. Your child's care team can tell you which of these matter most for your child.

Ask about a 504 plan

A 504 plan is a written plan of the supports a student needs at school. The association offers resources on 504 plans, along with guides for school nurses and for school sports. Asking for them early gives you something concrete to bring to the first meeting.

Older students and college

As students get older, they can take on more of the conversation themselves. The association offers tips for college-bound students, and it awards scholarships for students living with sickle cell disease. If your student is planning ahead, it is worth asking about both.

The same habits still apply away from home. A student who knows their own care team contacts, their triggers and their plan for a hard day is in a better position to ask for what they need.

You do not have to do it alone

School plans work best when they are built with the people who know your child. Go over your list with your child's care team before the first day, and share only what you are comfortable sharing.

The association can help with school resources, connect you with other families through its weekly online support group, and point you to medical referral help if you need a specialist. Office hours are Monday to Friday, 10 am to 4:30 pm CT.

If your family is going through a hard stretch, the association also offers one-on-one counseling for individuals and families. And if money is tight around the school year, its emergency financial assistance helps with utilities, prescriptions and food, with medical documentation of sickle cell disease required.