Trust Your Gut
You know your child best. So if something seems out of the ordinary, it probably is. Dravet syndrome is rare and affects everyone differently. So it’s important to keep your doctor in the loop about your child’s everyday experiences.
Elissa, 8, with her family
Tips for Parents and Caregivers
As a parent of a child living with Dravet syndrome, it’s important to remember you aren’t going through this alone. There are other families out there who know what it’s like. And often, great advice comes from those who have been where you are and know what you’re going through.
Tips for Parents and Caregivers
As a parent of a child living with Dravet syndrome, it’s important to remember you aren’t going through this alone. There are other families out there who know what it’s like. And often, great advice comes from those who have been where you are and know what you’re going through.
Elissa, 8, with her family
Advice From Parents and Caregivers on Managing Life With Dravet Syndrome
These inspiring tips come from other parents and caregivers—people who understand what it’s like to have a child with Dravet syndrome.
Live Life in the Moment
When your child has a misstep or setback, it can be emotional and hard to accept. Sometimes seizures can cause a child to forget something they might have already learned. In this situation, it can help to stay positive. But that’s easier said than done. Reach out to other parents and caregivers on Facebook. There are several groups that offer support on difficult topics and situations.
Visit the Dravet Syndrome Foundation Facebook page to connect with other parents and caregivers.
You’re Strong. You Don’t Need To Be Perfect
Don’t be so hard on yourself. It’s okay if you forget an appointment, or if you’re not there when your child has a seizure. What matters are all the times you are there. Give yourself credit for all the things you do right. If things are getting to be too much to handle, ask a family member or friend for help.
Stay Connected With Other Families
When you have a child with Dravet syndrome, it can feel like nobody understands what your family is going through. Knowing other families who are having similar experiences can help put an end to the feelings of isolation, teach you things you may not have known, and inspire you to continue moving forward.
Get connected to other families through the Dravet Syndrome Foundation.
Always Be Prepared
Expect the unexpected. When you go out with your child who has Dravet syndrome, consider carrying an emergency kit. Your kit will be unique to your child. It may include:
- Medicines
- A change of clothes
- Your child’s medical bracelet or another form of identification
- A list of important phone numbers, including the doctor and pharmacy
- Snacks and water
Record Your Day to Day
If you have a smartphone, it can be helpful to keep it handy. If you’re able to, record seizures or other important information to share with your child’s doctor during their next appointment. Note anything out of the ordinary that your child experiences. You can also keep a notebook with these details to share with your doctor. This may help your child’s doctor adjust their treatment plan specifically to meet your child’s needs.
Take Care of Yourself
It’s okay if the laundry is piled up. It’s not a big deal if there are dishes in the sink. It’s all right if you cannot cook dinner. Find something easy and make time to take care of yourself so you can recharge your body and mind. You can order pizza or buy a bag of chicken nuggets to stick in the freezer for those days that are just hard. Don’t ignore your own health and needs.
Support for Adults With Dravet Syndrome
Support and resources are important at any age. Connect with other parents and caregivers of adults with Dravet syndrome and get additional support through the Dravet Syndrome Foundation.
Your Friends and Family Mean Well When They Say…
You’ve heard it all. “Your child looks normal.” “I’m sure they’ll outgrow it.”
What your friends and family say may not always be helpful. But try to remember that they are coming from a place of support. They want to help but may not know what to say. When the situation presents itself, consider trying to:
Take the opportunity to pause and educate your friends and family
Your friends want to understand what you’re going through. You can share something you’ve recently learned about Dravet syndrome. Or you can tell a personal story. Sharing will help them better understand and possibly help in the future.
Tell family and friends how they can support you
Your friends want to help, and everyone can use a helping hand. Even the small things can make a huge difference. It’s helpful for everyone when you can be specific about what kind of help you need and when you need it. Maybe they can help cook dinner or drive your other children to where they need to be. It helps our mental well-being to know we have people around us that care enough to help.
Figure out if it’s a healthy relationship
Sometimes we may have a friend who’s doing more harm than good. They might not understand how hard Dravet syndrome is on your family. If you have a friend that’s adding more stress and anxiety in your life, it may not make sense to continue putting energy into that friendship. It’s important to surround yourself with a group of supportive and positive friends.
Share your advice for managing day-to-day
life with Dravet syndrome, so you can help
other families do the same
Get support and inspiration from
other parents and caregivers from
Shine Forward With Dravet
Share your advice for managing day-to-day
life with Dravet syndrome, so you can help
other families do the same
Get support and inspiration from
other parents and caregivers from
Shine Forward With Dravet