Managing daily life with Dravet
When you care for a child with Dravet syndrome, your day-to-day life likely looks different than other peoples’. It can require flexibility and extra planning. Here are some tips and tools that may make your life with Dravet syndrome a little easier.
Words of advice
We asked caregivers what their best advice is for navigating daily life with Dravet syndrome. Here’s what they had to say:
Take it one day at a time
I naturally try to think ahead, but I realized that I really couldn't plan anything too far in advance. I handle it by just focusing on one day at a time.
—Danitza, mom of Giovanni, age 4
Stick to a basic schedule when you can
We have the same bedtime every night, and Mia knows, so she doesn't fight it. She's just like, “Okay, it’s 7:30, let's go.”
—Erin, mom of Mia, age 16
Have a “take it easy” day
If Rosie's had a rough night the night before, [the next day] we’re all in pajamas, and I try to keep her rested and comfortable. We have a huge king-sized bed and she gets to hang out there with two tablets and whatever stuffed animals she wants to give her a peaceful, quiet space to recover.
—Melanie, mom of Rosie, age 3
Tips to support living day to day with Dravet
These suggestions come from other parents and caregivers who know what it’s like to have a child with Dravet syndrome.
Organization tips
Adding simple organization tools to your daily routine can make things like managing medication a bit easier.
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.
If I want to go see a movie with a friend, I am confident that her dad will have all of her meds. Organizing it in advance each week gives us one less thing to worry about on a daily basis.
—Melanie, mom of Rosie, age 3
Safety equipment and home modifications
Safety equipment can help your loved one gain independence and give you the peace of mind that they are safe to do so.
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
We have really tried to create an environment that is for her and is safe for her.
—Melanie, mom of Rosie, age 3
Service dogs
Canine Assistants is one of several organizations that trains and matches service dogs, including seizure-response dogs, with families.
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.
I heard Gracie pawing at Giovanni’s door, so I opened it and she ran in and laid down next to his bed. She normally follows commands if I tell her to come, but she didn't want to move. Giovanni started seizing in his bed right then, and she was not budging. She wanted to stay at his side.
—Danitza, mom of Giovanni, age 4
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