It’s common knowledge that medical information is private. But when is it practical and smart to tell other people about a child’s serious, chronic health problem? And what if your child doesn’t want anyone to know?
These questions can be extra complex with a health condition like primary immune deficiency (PI). PIs affect daily life and patients may get sick more often. But with treatment, the illness may not be so obvious to the casual observer. Many children and adults can live life with few limitations, participating in school, sports, and work like their peers.
There are more than 300 primary immune deficiencies and they range in severity, so deciding who needs to know is always a personal choice, based on the needs of the individual child.
To address these questions, we talked with Traci Davies and her 21-year-old son, Ben. Traci is a special education case manager in Maryland and Ben has a primary immune deficiency, which was diagnosed when he was 8. We also consulted Immune Deficiency Foundation (IDF) resources. Link here.
Key questions to answer are:
1. Is my child’s PI affecting his or her education, such as frequent absences or needing other accommodations in class?
2. Will my child be safer and healthier if people know about my child’s PI?
3. What are my child’s feelings on this subject?
Is my child’s PI affecting his/her education?
Absences will be a factor in deciding whether to tell the school, Traci Davies said. Her son, Ben, missed 40 days of school when he was first diagnosed and just starting treatment.
“I had to really communicate with the school and teach them to understand his illness. Communication and education are essential,” she said. “Often, teachers, nurses and health techs, and other school personnel are not familiar with PI and do not understand what it is to be a PI patient.”
She provided an IDF book to the school staff. Davies also recommends that parents find out what their school’s policy is on absentee notes. In her son’s school, after too many absences, the school required a doctor’s note.
Once Ben’s health improved, he missed fewer days, but he still was having trouble. It wasn’t until a PI-related hearing problem was found that his school performance improved. Davies said getting support from the school was important.
“This worked for us and I stayed in frequent contact with teachers, administration and the school nurse,” she said.
By high school, Ben was missing much less school. He was older and she did not need to be so involved. She did email his high school teachers, administrator and the school nurse even though Ben would have preferred that she tell no one. He talked about his condition with only a few close family members, she said.
“Ben did not want to tell anyone about his illness. Even his closest friends were not aware, including those who knew him when he was in elementary school,” she said.
Will my child be safer and healthier if people know?
Davies says she especially wanted the school nurse to know about Ben’s PI in case he got hurt, or if there was an outbreak of something like chickenpox.
The Immune Deficiency Foundation agrees and says the school should quickly tell parents about cases of flu, hepatitis, medically-resistant staph infections (MRSA) and other illnesses that spread person-to-person. Schools should take extra care to send a student who has PI to the nurse when he or she isn’t feeling well, the IDF says. And cuts or other wounds need first aid treatment by the nurse.
The IDF also recommends informing the school when the child needs daily medication. Schools typically have a policy that regulates bringing medicine into school and taking medicine during the day.
When it came to sports, Traci Davies also told Ben’s coaches, though family members normally attended his games and could keep an eye on things. She told parents of Ben’s friends, when Ben would spend time at their homes or sleep over. Kids fall down and get hurt and with Ben, extra care needed to be taken if that happened.
But his PI didn’t keep him from participating in sports and being out in the world, Traci Davies said. Ben played sports through his teen years and has always worked (and played) on the family farm, where he helps raise Texas Longhorns. In high school, he was involved in the Future Farmers of America and 4H.
“So many people have a misconception about not being able to be in the barn and around animals,” Traci Davies said.
Ben’s doctor gave him the green light to spend time on the farm because he was healthy and in treatment, his mother said. Of course, good hygiene, especially hand washing, is essential for people who have primary immune deficiencies. Now as an adult, he remains involved with the local 4H as an active volunteer and supporter.
What are my child’s feelings on this subject?
The IDF recommends sensitivity toward children who have PIs so they do not feel defined by their illness or exposed to unwanted attention because of it. It’s vital to allow the student to decide who to tell and when to tell them, the IDF School Guide says.
But it’s rarely that simple, as Traci Davies found. She informed school officials because she thought it was best for her son’s health, safety and education. At the same time, she did respect fully Ben’s desire not to tell friends about his PI.
“I preferred to keep it quiet,” Ben Davies said. “I didn’t even tell my closest friends until I got hurt in 10th grade and had to tell them. After that, I only told my closest friends.”
Things have changed since then.
“Now, I am more open and share it with people,” said Ben, who’s a student at the University of Maryland and runs his own landscaping business.
Parents should be prepared for ups and downs because kids and families aren’t just dealing with the PI, Traci Davies said. They’re dealing with the PI plus the usual stresses and strains of kids growing up and becoming individuals. Some kids and teens just don’t want to share their feelings with a lot of people. Ben was one of them.
“Kids go through so many changes from elementary to middle then high school, as well as transitioning into adulthood,” she said. “It is important to let them express, or not express, how they feel. As a parent, it is important to listen and provide your child with support as well as resources so that they are able to seek out their own support.”
Ben said meeting other people who had a PI helped him more than anything else. His doctor encouraged him to interact with the primary immune deficiency community. Ben found it was good meeting kids his age, he said, but it was even more important to meet adults who were working jobs and living their lives despite PI.
“It showed me that anything is possible.”