The Disease Management section helps caregivers collect and organize key medical information, including contact information for all medical providers, a full medical history, current medications and dosages, allergies, medical equipment, and more.
It also includes a Seizure Action Plan and guidelines on what to avoid (triggers), so caregivers can respond quickly and appropriately in emergencies.
We highly recommend that everyone have a Seizure Action Plan.
It’s important to keep your child’s medical care team contact information up to date. Print a copy for your C.A.R.E. Binder and also put a copy somewhere easily accessible to others.
Our loved ones with rare epilepsy may have a variety of different types of equipment and devices to support their care and wellbeing. Please use the fillable PDF chart to list any adaptive equipment, devices and durable medical equipment (i.e., walker, wheelchair, car seat/harness, C-pap machine, orthotics, iPad communication device, glasses, etc.).
TIP: Sometimes durable medical equipment also requires disposable medical supplies for use. See the Supply Refills section below.
TIP: Include copies of all insurance cards, print and store in your C.A.R.E. Binder. Make sure you update this information each year when your policies renew.
Use the fillable PDF to document your loved one’s medications.
Below are some helpful tips to keep in mind as you manage your loved one’s medications.
- Does this medication require a prior authorization (PA)?
- Make a note of the following important information for your prescription, such as pharmacy name/contact info.
- Have a point of contact at your provider’s office in case anything goes awry with filling your prescription.
- Determine what the estimated turnaround time is for prescription requests – especially if it’s different for submissions via a secure web portal vs. requests by phone.
- Contact prescriber immediately if a drug is on back order or the pharmacy is unable to fill.
Download Medication Information
For all individuals who experience seizures, it is important to provide your child’s school and others who care for your loved one with a Seizure Action Plan (SAP). An SAP helps organize all the individual’s seizure information to guide on what to do in an emergency. In addition, those within your inner circle (friend, family, school staff) can complete training on seizure safety for an extra layer of confidence to help ensure your loved one receives high quality seizure support in the event it is needed. Included in this C.A.R.E. Binder is the Individualized Seizure Action Plan (I-SAP); however there are additional seizure action plan forms and templates on the Seizure Action Plan Coalition and Epilepsy Foundation websites noted above.
- Download the Seizure Action Plan Template you need below.
- A simple ASAP for emergencies and a longer, more detailed ISAP for ambulance rides or hospitalizations can be helpful.
- Work with your medical provider to determine when a seizure rescue medication should be used and which medication you will use.
- Share your Seizure Action Plan with anyone who might be with your loved one when they experience a seizure.
- Be sure to print a second copy to keep in your C.A.R.E. Binder so all your loved one’s information can be accessed in one place.
Download an Acute Seizure Action Plan (ASAP)
Use the fillable PDF summary page to document your loved one’s necessary supplies. This includes things like diapers, medical supplies and even durable medical equipment and accessories. Sometimes durable medical equipment also requires disposable medical supplies for use.
TIP: Set a reminder on your phone to go off at least two weeks before supplies run out to remind you to start the order process. Adjust the reminders as needed depending on processing time for each of the needed supplies. Also, pay attention to weekends and holidays and try to avoid needing a resupply around those times, if possible.
In addition to seizures, our loved ones with rare epilepsy may have several comorbidities, including GI issues or allergies to certain substances such as seasonal allergies or medication allergies. They may also have sensitivities to things like fabric, food, light or patterns. Sometimes our loved ones may have a reaction for an unknown reason to sounds or other things in our environment. These sensitivities can sometimes trigger seizures, challenging behaviors, or other reactions. It’s important to document all your child’s allergies and triggers to alert others. This fillable PDF can be helpful to those who may assist with the care of your loved one, but this can also be useful in everyday situations.
TIP: After completing the information, print an extra copy. Put one in your C.A.R.E. Binder and keep one out in plain sight for quick and easy access. Also, make sure you share this list with anyone who provides care for your loved one with rare epilepsy.
CLICK HERE TO DOWNLOAD THE FULL C.A.R.E. BINDER
This Guide can help you get organized, but should not be considered as a substitution for legal, financial, or medical advice.
VIPrareCARE.com and the C.A.R.E. Binder were proudly developed in collaboration with the Dravet Syndrome Foundation, Lennox-Gastaut Syndrome (LGS) Foundation, TSC Alliance and other organizations who support families like yours and was made possible through UCB funding and partnership.
Updated 09/11/25 (AM)