For parents of children with type 1 diabetes, the back-to-school
season is anything but calm. The months leading up to the first day
revolve around doctor’s appointments, prescription refills, packing
supplies and training school staff. If this is your first year preparing
for school, here’s what you need to know and plan for your child’s
back-to-school endocrinology appointment.
When should your child see their endocrinologist for school orders?
Try to schedule your child’s appointment before school starts. If you plan to do a 504 or IEP plan, contact your school district to get the process started early. Most of the time, schools require a doctor’s orders so they can include the proper accommodations.
What’s a 504 plan?
A 504 is a formal plan that ensures your child’s disability is supported through equal access to school, through college. 504 plans are not designed to set goals and track progress, like the IEP plan. Schedule a meeting with your school to go over their accommodations as well as anything you want added to the plan.
Here are examples of common accommodations made in 504 plans for students with diabetes:
- Ability to eat or drink anytime, anywhere
- Extended lunch or snack time
- Ability to go to the bathroom whenever they need to
- Ability to carry their diabetic supplies including food and devices (this may depend on the student’s age)
- Extra absences for medical appointments and sick days
- Ability to delay or reschedule tests when blood sugar levels are not in range
Make sure your child’s 504 plan outlines what to do in emergency situations — like a fire drill or shelter in place. It should list who will monitor your child’s diabetes and administer care if the nurse is unavailable — and don’t forget, any teacher or classroom aide involved in your child’s care should receive the necessary training required to do so.
What’s an IEP Plan?
If your child has a learning disability as well as diabetes, they may qualify for an IEP plan. Our daughter Emma has an IEP because she has both diabetes and autism.
An IEP plan gives accommodations to your child like the 504 plan, but it also includes a formal eligibility evaluation. If your child meets the criteria, an IEP plan will be drafted that covers their strengths and weaknesses. It outlines the accommodations they’re offered and sets goals and objectives to help monitor the progress your child makes. The IEP plan will be reevaluated, and goals updated as they progress.
What to prepare for your doctor’s appointment
Before your doctor’s appointment, it helps to do a little prep work. I’ve divided this section into three categories: supplies, doctor’s orders and accommodations.
Make a list of all the supplies you’d like kept in the nurse’s office as well as those that should be on hand in the classroom for emergency situations. Here is Emma’s list of supplies:
- Test strips
- Alcohol swabs
- Pen needles
- Ketone meter
- Ketone test strips
- Hypo snacks
- Insulin pump
- CGM sensors
- Gvoke HypoPen® (more on this below!)
Ask your doctor to increase the number of supplies in each prescription so you have enough to store at school and at home. Keep a list of your supplies and their expiration dates as well so you’ll know when to replace or restock.
When you go to the appointment, bring a list that includes anything you want added to the doctor’s orders, on top of what’s already on there — insulin dosages, how a high or low blood sugar level should be treated, when to test for ketones, and when to sit out of a physical activity like gym or recess.
Since you know your child best, they may need additional information listed in their orders. Here are Emma’s special instructions:
- Emma’s classroom is far from the nurse’s office, so we added that her lows should be treated by her aide with three gummies before going to the nurse’s office.
- We asked for her to be given water along with her insulin correction for high blood sugar.
- We added instructions about when I should be notified of a treatment or problem. The nurse texts me with every treatment and calls me if Emma takes off her insulin pump or CGM.
- In the event of a pump replacement, which we handle at home, we noted that Emma should be treated with an insulin pen if her sugar is high while she waits for me to pick her up.
Another important thing to mention in the doctor’s orders is when to administer glucagon. Glucagon is a life-saving medication that can be given in the event of very low blood sugar. For example, we indicate to administer glucagon if:
- Correcting with food or drink isn’t working
- Emma is unable to swallow safely
- Emma feels like passing out
- Emma passes out or seizes
Even if you don’t have your child’s 504 plan yet, discuss it with your doctor. Ask what accommodations they would like the school to give your child. Your doctor likely sees many children with diabetes — so they’ve worked through issues with 504 and IEP plans and can help guide you as to what’s most important for your child’s safety.
Should I ask about any new medications or treatments?
Each year, I’m eager to learn about new medications that might help my daughter manage her diabetes. Like many of you, my biggest worry is a dangerous low. This year, we’re making sure that her nurse’s office and classroom has Emma’s favorite hypoglycemic snacks and a glucagon autoinjector.
After speaking with our doctor about the various glucagon options, we ended up choosing Gvoke HypoPen® (glucagon injection). It’s premixed and ready-to-use, and anyone can administer it in just two steps. The prescription comes in a premeasured dose for children over the age of 2, and there are no visible needles, so it’s less scary. You can find instructions on how to use it on the package as well as online resources for easy training and important safety information.
It can get expensive to stock up on diabetic supplies, so check for financial assistance and coupons. We found a Gvoke® copay card!
For any new prescription, make sure to do your research! Look for medications that are easy to use, since someone else will be helping your child with their diabetes care during the day.
More ways to ease your anxiety
Find diabetic supplies that put your mind at ease. Emma’s continuous glucose monitor lets both me and the nurse watch her blood sugar when she’s at school via a phone app. We can see when her levels are dropping or rising, and I can communicate with the nurse before there’s a problem. This helps me feel like I have a sense of control and a way to help her — even when she’s away from me.
The other medication that helps ease my anxiety is
As your child’s primary advocate — and as the person who spends the most time monitoring and treating their diabetes — make sure you review and agree with the doctor’s orders as well as the 504 and IEP plan the school writes. You can also ask for a 504 or IEP advocate if you don’t feel comfortable communicating with the school district or if the process is confusing. These experts will guide you through every step and ensure your voice is heard.
I think back to Emma’s diagnosis almost every day. As a person with diabetes, it was my worst nightmare. But when I look at her today, I see a happy, energetic little girl who can do anything she sets her mind to. I know she will be the most wonderful preschooler. For all the parents about to take this step alongside us, I wish you the best, and I know your little diabetic superheroes will be amazing!
Gvoke is a prescription medicine used to treat very low blood sugar (severe hypoglycemia) in adults and kids with diabetes ages 2 year and above. It is not known if Gvoke is safe and effective in children under 2 years of age.
Do not use Gvoke if you have a tumor in the gland on top of your kidneys (adrenal gland), called a pheochromocytoma; you have a tumor in your pancreas, called either insulinoma or glucagonoma; you are allergic to glucagon or any other inactive ingredient in Gvoke.
Gvoke may cause serious side effects, including high blood pressure: Gvoke can cause high blood pressure in certain people with tumors in their adrenal glands. Low blood sugar: Gvoke can cause low blood sugar in certain people with tumors in their pancreas. Serious skin rash: Gvoke can cause a serious skin rash in certain people with a tumor in their pancreas called glucagonoma. Serious allergic reaction: Call your doctor or get medical help right away if you have a serious allergic reaction including rash, difficulty breathing, low blood pressure.