When Illness Forces You to Stand for Your Child

Guest Columnist: Ellen Schneider

Our daughter, Abigail, was diagnosed with Type 1 diabetes when she was in the second grade.

My husband and I immediately sat down with the assistant principal and the school nurse to discuss Abby’s medical condition and what care she would need while in school. For the two years that Abby attended this school, we never had a problem. I would visit Abby’s class every September and explain to her classmates what Type 1 diabetes was, how it would affect Abby, symptoms to look for, and how to treat them. I asked them to take turns being her buddy and escorting her to the nurse whenever she needed to test her blood sugar level. I worked with Abby’s teachers and the homeroom parents to ensure that Abby would have suitable snacks to eat during school events and the ever popular birthday parties.

I obtained information from the Juvenile Diabetes Research Foundation’s website on advocating for your child in school and printed out their recommended wording for a 504 Plan, which we modified and discussed with school personnel. The 504 (Health) Plan allows you to make special requests and we modify the plan and discuss any changes with the school administrators and nurse each June. Second graders ate lunch at 10:30 am and had a snack in the classroom at 1 pm. Having lunch so early would negatively affect Abby’s blood sugars, so we included a request that Abby eat snack at 10:30 am and eat her lunch when her classmates were eating snack. Since exercise lowers her blood sugar, Abby’s 504 Plan states that she have gym scheduled before lunch.

Any time Abby feels “weird” due to blood sugars being too high or too low, she leaves her classroom and visits the school nurse. It was very important to us that this also be written into the 504 Plan. While not critical in second grade, this point becomes more important as Abby gets older. It means that if Abby needs to visit the school nurse while the class is taking an exam, whether a subject test or a standardized test, she is allowed extra time to complete the exam. By planning ahead, we hope to prevent any problems when Abby takes the SAT exams.

Abby now attends middle school and the nurse is not comfortable treating Abby’s diabetes. While there are other children in the school with Type 1 diabetes, Abby requires more insulin and more frequently than the other students. This nurse hasn’t always treated Abby and her diabetes appropriately. She has told Abby that her food choices weren’t suitable, that Abby should take more control of her diabetes and finger-test herself (because the nurse didn’t want to do it), and that Abby should use an insulin pump, like some of the other students.

It is the nurse’s responsibility to administer insulin when necessary—not make recommendations as to Abby’s care. We let Abby dictate her own level of involvement. Abby began finger-testing and drawing up insulin when she was comfortable with the procedures. Abby will use an insulin pump when, and if, she decides to use one.

The most serious problem, however, involves the administering of insulin when Abby’s blood sugar levels go over 350. The 504 Plan states this and the nurse has a written protocol, signed by Abby’s endocrinologist, detailing the amount of insulin to administer depending on Abby’s blood sugar level. The protocol requires no thought. If Abby’s blood sugar is X, nurse gives Y amount of insulin, regardless of the time of day. It’s simple. Unfortunately, one day the nurse didn’t give Abby insulin because it was 10:30 am, and “too early in the day” to give insulin. Nor did the nurse call me to ask about it. What made this even more frightening was Abby’s blood sugar level was the highest it had ever been, yet I didn’t even get a phone call.

The next day I stormed into the nurse’s office demanding to know why insulin wasn’t given. Totally unsatisfied with the nurse’s response, I insisted on meeting with the principal to discuss the situation. He promised to question the nurse and get back to me, which he didn’t. Two weeks later, I sent a letter to the nurse’s supervisor alerting her to the nurse’s extremely negligent behavior. The supervisor called and we discussed possible solutions. I’m pleased to report the nurse has since acted in a more appropriate manner. If you don’t fight for your child, who will?