Building your loved one’s care team
Because each person with Dravet syndrome is so different from the next, your loved one’s care team will be personalized to their needs. There are many specialists and doctors who can become a part of your unique team, and it doesn’t stop there. Your care team also includes anyone who cares for your child and knows your seizure action plan.
Qualities to look for in a care team member
Our Shine Forward caregivers named neurologists, epileptologists, pediatricians, speech pathologists, therapists, and social workers as key members of their families’ teams. Here are a few of the qualities that they admire in healthcare professionals and specialists.
According to Shine Forward caregivers, the best care team members...
Respond quickly
If Giovanni's having an emergency at 7:00 am on a Sunday morning, [his neurologist] will get on the phone with that emergency team.
—Danitza, mom of Giovanni, age 4
Listen
If the medical provider has the time to sit and listen to what we've experienced, then I know that they're a good provider.
—Danitza, mom of Giovanni, age 4
Do their research
Mia’s neurologist is great. He's very into research and every visit he's always telling me what he sees coming down the pipeline and if there's anything that looks like something that would be [helpful] for Mia.
—Erin, mom of Mia, age 16
Audition to be on your team
Don't take your child to the first appointment. Make it an interview with the doctor to see if they are a good fit for your child.
—Melanie, mom of Rosie, age 3
Build a genuine relationship with you and your family
When I come in for a visit with Mia, he asks how Mia is doing, but then he also asks, ‘How's your family? How's your husband? How's Hannah?’ You can tell, he cares about our family.
—Erin, mom of Mia, age 16
Links to helpful resources to find doctors:
If you are looking for expert healthcare providers near you, these resources may help.
Locate an experienced neurologist See if you live near a comprehensive care centerTraining others to join your team: Share your seizure action plan
Beyond your care team of doctors and specialists, there are many others in your child’s everyday life. Sometimes, building your team can mean making sure that your child’s teachers, school staff, and extended family all know what to do if your loved one has a seizure.
The best way that other people can support me or my family is getting to know what we do in an emergency. If they're able to start a timer, grab the emergency medication, or entertain my other son so that he doesn't have to watch what's happening, that's a big help.
—Danitza, mom of Giovanni, age 4
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