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Posted on 14. August 2014

Back to School with PI

By Jessica Johnson

It’s normal for parents to feel back-to-school jitters around this time of year. While our children may believe that summer is here to stay, we know better. School is just around the corner. And for many parents, that brings about a whole new set of questions and concerns: Is my son’s backpack big enough to hold his winter boots and his lunchbox? What’s so special about a No. 2 pencil, anyway?

But for parents of children with primary immunodeficiency (PI), the words “back to school” stir up fears that go way beyond the mundane: What if my child gets sick and no one contacts me? Will anyone believe me when I try to explain how serious his condition is?

While there’s no way to guarantee your child will remain perfectly healthy throughout the school year, there are a few things you can do to help ease the transition for your PI child.

Get to know the school’s nurse right away. You may need to set up an appointment to meet with the nurse the first week of school. While every child is required to fill out a medical history form before starting school, a child with PI has issues not covered in detail on most forms. Explain to your child’s school nurse what special precautions need to be taken in order to keep your child healthy. For example, wounds incurred on the playground need to be cleaned right away to prevent infection; a Band-Aid is not enough.

Ask to be notified when an outbreak occurs in the school (including influenza, strep, chicken pox, measles, meningitis or hepatitis). When the number of absences is on the rise, I keep my kids home for several days at a time and have their work sent home. So far, this has not presented a problem with their teachers or the principal.

Explain your child’s condition to his or her teacher. The school nurse isn’t around your child all day long. The teacher also needs to be notified of any special issues concerning your child. For example: Does your child’s condition cause him to make frequent but necessary bathroom visits? Make sure the teacher is aware that this is a need, and not just a bad habit. Does your child have a chronic cough? My son does. I make sure to tell each new teacher about his chronic lung disease right away, so I don’t get a phone call from the school nurse saying: “Your son sounds like he’s catching a cold.” My younger son has frequent eye infections for which he receives antibiotic drops. The teacher is aware of this; otherwise, he’d probably be sent home at least once every two weeks for pink eye.

Schedule infusions and check-ups around the school calendar. If your child receives intravenous immune globulin infusions in a clinic, he or she may have to miss school at least once a month. Make sure to check the school calendar and your teacher’s newsletter before scheduling these appointments to avoid missing something important to your child, such as a field trip or a special classroom activity. My oldest son had a yearly immunology check-up on the same day that his class went to a play at our local theater. I don’t think he ever forgave me for that one.

Those receiving subcutaneous administration of immune globulin may also have to choose a new infusion day. Choose a time that doesn’t interfere with school, but also allows your child to relax and be a kid.

Most of all, try to relax. Things will happen. Children do get sick — even children without PI. Being prepared is half the battle. Having an army of supporters surrounding your child is the best thing you can do to give him or her a healthy start to their educational journey.

For more information, the Immune Deficiency Foundation has a helpful “IDF School Guide.” Click here to download.


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