Managing daily life with Dravet

Here are some simple ways you can stay on track without any additional stress:

• Online portals: Look into online portals that your loved one’s doctor has available. They can make it easy to make appointments, request medication refills, and schedule deliveries.
• Medication prep: Set a day to prepare medication for each week and organize it in your medicine cabinet, so you don’t have to think about it as much daily.
• Medication schedule: Put your loved one’s medication schedule and doses on the fridge so you have it right in front of you every day as you give your loved one medication. You can also keep this list in your notes on your phone so you can access it on the go.
• Daily alarms: Set reminders for medication and appointments using your phone, an alarm clock, or a smart home device.
• Meal prep: Prepare your loved one's meals or formula in advance when you can. If grocery shopping is an added challenge, consider ordering groceries to your house or subscribing to a meal-kit service that comes with preportioned ingredients and step-by-step recipes.

Here are some safety devices that caregivers in the Shine Forward community use in their daily life:

• Bed sensors and monitors alert you if a seizure starts overnight by detecting abnormal movements
• Cubby beds are zipped in so your loved one cannot lift or become wrapped in their sheets in the event of a seizure
• Cameras in their bedroom and other important rooms can help you keep an eye on your loved one if you need to use the bathroom or go into another area of the house
• Helmets can help your loved one avoid injuries in the case of a fall
• Cooling vests keep your loved one cool when it is hot outside if high temperatures are a seizure trigger
• SMO (supramalleolar orthoses) braces can help your loved one gain ankle support and walk with more balance
• Gates or door latches can ensure that your loved one stays in an area of the house that is safe for them
• Chairs with arms can hold your child in their seat, even in the event of a seizure
• Dental tools can keep a loved one’s mouth open while you brush their teeth
• Feeding tubes may help if your loved one struggles with eating

Their dogs:

• Are trained to stay next to their companion during seizures
• Have been taught to get help, if it's available
• Can sometimes predict and react to seizures before they even happen

Here is an overview of the process to get a service dog:

• Step 1: Select a service dog organization. Try reaching out to other caregivers online to ask for recommendations and advice about which organizations they used.
• Step 2: Find funding. The training that service dogs require for Dravet syndrome can be very expensive. Luckily there are foundations that can help you fundraise, or even pay for it in full.
• Step 3: Meet your new family member. Once your family gets set up with a service dog, you will start training with them. One caregiver said this training was about 2-3 times a week for several months, to create a strong bond between their loved one and their furry friend.