Never miss a dose: Smart strategies for managing HAE medications

Last updated May 20, 2024, by Danita LaShelle Jones

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When our oldest daughter (whom we lovingly call Ladybug) was officially diagnosed with hereditary angioedema (HAE) in 2021, we were overwhelmed with scheduling medications and doctor appointments. Although we were thankful to finally have answers to questions regarding her symptoms, the added responsibility of juggling medications was immediately arduous and burdensome. Moreover, remembering what to carry with us when traveling felt suffocating.

Home-administered intravenous (IV) emergency meds required timers, refrigerators, and storage space. Moreover, maintenance medications couldn’t be missed and had to be ordered for on-time delivery. Combined with managing the activities of three other school-age children, relying on my own memory failed almost immediately.

“Wasn’t I supposed to take my medicine yesterday?” Ladybug asked one week.

I completely panicked. In my rush to give her dose as soon as possible, I forgot to grab medical tape, gauze, and an additional saline syringe. Still new to the at-home administration, I was making an already stressful situation much worse.

I knew we needed a better system. But it took a little while for me to discover the solution to our problem was right inside our house.

About a week before Christmas 2021, our then-6-year-old son saw a yellow ring light on our Alexa. When he asked for the notification, it informed him of the pending delivery of his favorite toy. Although the surprise was ruined, my husband and I realized that audible notifications or notifications everyone could see were a step in the right direction.

Slowly, we started to find other small but key ways to make managing our daughter’s HAE medication easier.

Create grab-and-go administering kits

Before even setting up reminders, the best thing to do is make two kits, one for maintenance medications and the other for emergencies. This way, you’ll always have what you need whether administering at home, traveling for the day, or grabbing in an emergency.

Label and store the kits in a place you can easily access and remember, even if you are in a panic. Ensure they are always stocked with gauze, bandages, necessary needles, alcohol wipes, and in some cases, saline syringes. Because some medications must be refrigerated, purchasing a small, portable cooler can come in handy for longer trips away from home.

Share calendar reminders

Although creating medication reminders on your phone can work, it is even better to share that calendar with a caregiver, fellow caregiver, or trusted person. Having a partner in reminders is a great way to ease the anxiety. It also means you have backup support for remembering. There have been many busy weeks when I’ve received a medicine day reminder from my husband.

Write it where everyone can see it

In addition to an electronic reminder, a whiteboard calendar in a central location is a great visual. Using erasable markers, you can color code scheduled maintenance meds, mark off when emergency meds were given, and even write down pharmacy numbers for reordering. The colors are also an excellent way to remind smaller ones who cannot read medication names. They may not be able to pronounce their maintenance medication, but they can understand a giant blue dot means that’s the day they take their meds.

Download HAE apps

There are many medication reminder phone apps. Some even allow users to add notes, such as when there are issues with a dosage. If, like Ladybug, your child has the app on their phone, they can set reminders in a way that works for them.

Program the universal home device

If your home has a device such as Alexa, set up HAE-related alerts, such as for when to take medications and reminders about doctor appointments. Program the device to show an alert color or pop up on the screen when it’s time. More advanced devices even have programmable alarm sounds.

Reach out to the medication liaison

Many pharmaceutical companies partner with nonprofit organizations specializing in patient services, which may include being able to request medication-related reminder phone calls or texts. Our liaison will say, “Do you need more ____?” And if I realize that we do, I just answer yes.

Get your little patient involved

Sometimes, as an adult caregiver, it’s easy to become the boss of medication management. Instead, encourage age-appropriate involvement with your child. Whether they help you make the calendar for the month, you share the calendar with them on their device, or they listen in while you order new medications, it allows them to become involved in the process. And it makes it more them centered and less caregiver centered.

Now that Ladybug is 14, she has begun participating in medication management up to her comfort level. Whether she grabs her kit, takes her medication out for prep, or simply reminds me that “today’s the day,” I’m happy she’s figuring out how to keep up with the schedule. But what I want her to learn most of all is that it’s better when you’re not trying to do everything yourself.

One of my favorite quotes sums it up best: “A burden shared is a burden halved.”

Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.