As it's Back to School season, we thought it would be valuable to hear some wisdom from a school nurse, on the front lines of helping take care of kids and teens with diabetes during school days. It's a tough job.
So today we welcome fellow T1D Cassie Moffitt, who is a school nurse in Texas. You may remember her name as one of our 2016 Patient Voices Scholarship winners, who attended our annual DiabetesMine Innovation Summit last year. We're grateful for her work, and also her contributions here at the 'Mine today, sharing some very specific D-advice from the school nurse POV.
On Back to School with Diabetes, by Cassie Moffitt
It’s the most wonderful time of year! Christmas? Um, no. Back to school. For you parents out there, now is the time when you get to take advantage of Back to School sales, the wine aisle at Target that faces the school supply aisle (at least at mine), and tax-free weekend (in Texas, anyway).
Oh, and that time when you get to drop your little darlings off to your trusted teachers and school nurses -- like me -- for a daily eight-hour dose of instruction for the next 180 days.
If you’re the parent of a child with type 1 diabetes, it may also be the most stressful time of year. You know what I’m talking about—sitting on edge to find out who your child’s teacher might be, praying to whatever deity you subscribe to that they will be understanding and tolerant of your child’s needs and a trusted ally. You may also be sitting on the edge of your seat praying that the school nurse you worked with last year will return, understanding and tolerant of your child’s needs or a trusted ally. If they were none of those, you’re probably praying they retired. And if they’re transitioning—from elementary to middle school, middle school to high school, or beyond—well, just know you have an ally over here. I get it.
I personally was diagnosed with type 1 diabetes back in 1983, when I was 17 months old. Yes, you read that right. That means I’ve been through this. I’ve watched Betty’s (my mother) anxiety become my own, as she went through the usual routine of making sure I had plenty of non-expired supplies, snacks, and emergency supplies over a 13-year course. There were the meetings, the doctor’s notes, the “here-are-all-the-phone-numbers-please-please-PLEASE-call-if-you-need-anything” please. I get it. And I see you.
Back in 2012, my hand was forced and I “had” to become a school nurse. Prior to that time, I found school nursing insulting--even though it had been my very favorite rotation in nursing school, and it was a school nurse who taught me how to test my own blood sugar. Regardless, I had previously worked in a pediatric endocrinology clinic and the calls from the school nurses could be excruciating. “How do you not know that ketones are not an automatic reason to send someone home?” was just one of the questions that would make my blood boil. In some ways, it felt like a personal attack, for reasons you can probably imagine.
However, the view is different on this side of the fence.
Here is what I can 100% guarantee: for the most part, we school nurses want to do the right thing. Your kids are with us for most of their waking hours—away from you. We don’t take that lightly. We want to keep them as safe as possible with as little interruption as possible. I can’t speak for everyone, but I would think it’s generally agreed that a predictor of success is the ability to maintain both of those attributes.
As school nurses, we’re in an interesting position. We’re in the school setting, often bound by school rules. However, we’re also bound by the laws set forth by various Boards of Nursing (the rules vary from state to state). While I’m not a legal expert, I can tell you what’s required of me and what I’m prohibited to do by law. I hope this will help clarify that we’re not making requests because we want to be difficult or we’re bored—believe me, we are anything but bored. We ask for things because we want to do the right thing, provide continuity of care, but operate within our licenses so we can continue to do the things necessary to promote success for you and your child.
That being said, one of the most important things you can do is bring a current set of doctor’s orders to campus. Without a set of doctor’s orders to provide specific ratios, correction factors, directions for testing times, numbers to act upon, provisions for activities, emergency management, and care-level of the student, we’re basically driving a truck off of a cliff while wearing a blindfold. That sounds silly, right? As nurses, we have to have specific direction on how to act, and with which doses to treat. Those same requirements govern us in hospitals, clinics, or any area where we might practice.
There are also very strict rules on taking verbal orders; we can only take orders from a physician. I know this isn’t going to be a very popular statement, but that means we cannot take orders from parents or students. I know it seems harmless, since this is what you do at home. Unfortunately, the Board of Nursing may not see it that way. They see that as acting outside of our legal scope of practice, and some even consider it prescribing medication—a huge no-no.
In Texas, we can’t act on orders that are greater than one year old. Again, I know that’s a huge inconvenience, but kids change and grow a lot in a year. What might have worked a year ago may not work now—but I’m not allowed to determine that. And what might have worked a year ago can create a lot of havoc now—but again, I can’t modify those doses. If the issue is getting an appointment with your endocrinologist, or finding one, let us help. We want to.
Supplies, Supplies, Supplies!
Another huge help is if you bring all your supplies beforehand. There’s nothing (okay, almost nothing) worse than a kiddo who’s ready to go to lunch, and you find out that lo and behold, you have no testing strips—or worse, NO INSULIN. Remember how I said there’s nothing worse than a kiddo ready to go to lunch and doesn’t have all the necessary supplies to test and treat? One thing that’s worse is a kiddo who’s hungry and has to wait for insulin, or test strips, or any number of things in order to be ready to eat and treat.
Worse yet, is when a kiddo is low and needs a treatment. Unfortunately, not all schools have snacks to spare. That’s why we beg you to bring plenty of fast-acting carb snacks. I can’t tell you how often I get peanut butter and crackers or chocolate for lows. They’re tasty, for sure, and they’re helpful if you need a long-acting snack to tide over until a meal. However, we also need something in order to bring that blood sugar up quickly. Because most schools follow the “Rule of 15” protocol for treatment of lows (15 grams of fast-acting carb, test in 15 minutes, retreat if blood sugar is below the number set forth by your care provider), if you require something different, please, please, PLEASE have that placed in the school orders.
While we’re talking about things we absolutely have to have, I am begging you, for the love of all that’s good and holy, to please bring an unexpired Glucagon kit. The likelihood of using it is rare, but as the saying goes, “It’s better to have it and not need it, than need it and not have it.” While Glucagon use will result in an automatic EMS call, it’s imperative to give it at the time in order to prevent further danger.
I know there is a lot to remember, so what I consider doing is making a checklist of all your supplies. You might even mark the calendar with dates things may expire so you can be ready to “reload." For example, if you think the insulin will be expired on X date after opening, put a giant mark on the calendar so you can go ahead and have that insulin ready to go in order to keep everything in-date and blood glucose optimal. Here’s what I would include:
- Test strips
- Insulin (pen or vial, whichever you use)
- Syringes/pen needles
- Ketone strips
- Lancing device/lancets
- Glucagon kit
If your child is on a pump, it’s usually a good idea to leave spare site change supplies and batteries in case of pump failure. Be advised of your school’s policies for site changes. For example, nurses and health assistants in our district are not allowed to do pump site changes. It’s considered an advanced, invasive procedure, and with pump warranties easily nullified, our nurses are not allowed. I’m not even supposed to do it. Just check with your school or district nurse to draft an alternate plan. In my district, either the parent or student does the pump site change. If neither are available, then school orders generally reflect a plan to go back to syringes until the student leaves campus.
I would highly recommend a meeting with your nurse prior to the beginning of the school year to outline all of these so you can both be prepared and aware of the plan of care. If you’re having issues obtaining supplies—because it would be too easy if this were actually easy—please don’t hesitate to ask your school nurse about resources. You can also find good local resources through your local JDRF chapter, or various Facebook groups. For example, there’s a Pay It Forward movement involving several cities. I know of groups in Austin and Houston, and I assume there are many, many more. Don’t feel like you don’t have options. And remember, we’re all in the trenches together—as a school nurse and T1 myself (who grew up without a lot of options), I want nothing more than to help. I think you’ll find that most of us agree.
Meet Me in St. Louis
…Or at the mall, or for coffee, or whatever. My point is, we school nurses want to meet you and your child. We want to do the right thing by you both, to make you more successful. I’m often asked by nurses in our district to come to meetings with parents and students who have diabetes. This isn’t because they don’t know anything about diabetes (they absolutely do, because I teach the class!), but it’s because they want to know you. They want to know the right questions to ask and what makes your child tick. They want to know how to recognize a low, and if there’s a skill they can work with a student on to help them grow and learn.
We know about diabetes, but we want to know YOU. And if we get to be a catalyst in your child’s success, that’s even better.
I'm grateful for the fact that I was in third grade, I went to the school nurse one day to test my blood sugar. I told the nurse, “I don’t know how to do this.” Her response? “Well today, you do.” That nurse turned my life around in less than five minutes.
One, Two, Three... 504!
This can be a hot-button issue. Some argue against 504 plans for fear of a student being “marked” as disabled, and therefore, subject to discrimination. My experience has been that without a 504, students meet more roadblocks. For example, Texas has the dreaded STAAR test—a standardized test that is the absolute bane of our existence for multiple dates throughout the spring. The rules of administration are so stringent that restroom breaks have to be recorded—just as an example. I tell parents to make sure everything is accounted for: time for testing and treating without a time penalty, an opportunity to retake the test without penalty if blood sugar isn’t within the prescribed target, provisions for a cell phone if your child uses a Dexcom Share system or Nightscout, access to water, food, and restroom breaks without penalty. Those are just a few. There are some great examples of 504s on the American Diabetes Association website. You may also reach out to another T1 parent who has blazed the trail before you, a school nurse in another district, or get ideas from your school or district 504 coordinator.
Every public school should have a 504 coordinator. It may be a counselor or assistant principal, but find out who that person is and request a meeting in writing. I would also encourage you to make sure the school nurse is invited to that meeting, as well as your child’s teacher. Then you can all work together to draft reasonable accommodations so that your child is successful at school.
If you’re finding that you’re not feeling supported, please, please, please go up the chain of command—from the district nurse or 504 coordinator, to the school administrator, to the superintendent, to the Office of Civil Rights if necessary. (Keep in mind that rules in private and parochial schools differ).
The most important piece of advice I can offer in this area is to plan ahead, plan ahead, and did I mention: PLAN AHEAD?? Even if your child isn’t in a testing year, go ahead and get the 504 initiated so that all you have to do is amend it going forward.
If your child will be taking PSAT, SAT, ACT, or any other standardized college admissions test, I would highly recommend starting the accommodations process as early as possible. I’ve had students and families who have started this process a year or more in advance because the accommodations can be very detailed and rigid. Work with your school counselor, school nurse, and healthcare provider to draft a detailed testing plan and accommodations. Several drafts may have to be submitted to the College Board or other testing agency, so I cannot implore you enough to get this process initiated as quickly as possible.
The beginning of the school year can already be stressful with all the planning and prep that goes into starting a school year. Adding management of a chronic condition on top of that is enough to send one… well, over the top. There’s always so much more I can say about this, but I really feel these suggestions are a great start. Those of you who have been doing this a while probably have some great suggestions that I haven’t even thought of. As your school nurse, I welcome those suggestions. The way I navigated this may be completely different from the way you or someone else has done it, and that's fine: we’re all in this together. But one thing I want you to understand more than anything else is that you can be successful. And we school nurses want to help you get there!
Thanks for sharing this, Cassie. You sound like just the kind of school nurse that we need more of, and good luck with the start of the new school year!