Coping With Dravet Syndrome

Living with Dravet syndrome involves many considerations that can affect day-to-day life. There are emotional, physical, and social issues that can arise due to this condition. A multidisciplinary medical team can help with providing direction, treatment, and referrals to appropriate services.

The condition also affects families, who will need support too. Coping strategies may change over the years as a person’s needs and situation change. 

Emotional

Cognitive and behavioral issues are part of Dravet syndrome. Emotional challenges can arise due to these problems and can also exacerbate them. Managing behavioral, emotional, and cognitive problems often goes hand in hand. 

Strategies for managing emotions in Dravet syndrome can include:

• Enjoying extracurricular activities: Examples include drawing, playing games, listening to favorite music, and more. A person with Dravet syndrome can become frustrated and discouraged if any aspect becomes goal-driven. A focus on enjoyment can help with emotional challenges for some people. 
• Maintaining a regular schedule: Unexpected events can be upsetting or overwhelming. Consider creating a predictable and manageable schedule to minimize stress.
• Getting enough rest: Sleep deprivation can cause irritability for anyone, but it can be especially difficult for someone who has a developmental issue like Dravet syndrome. It is important to maintain a quiet and calm environment for resting, as well as a regular sleep schedule.
• Talking with a therapist: A person living with Dravet syndrome can have a hard time expressing and understanding their own emotions. Talking with a therapist can help a person share their concerns and learn how to respond to and reduce anxiety and other emotions. 
• Family counseling: Families can become overwhelmed when taking care of a person who has Dravet syndrome. The situation can be difficult for parents, as well as siblings. Group counseling, in addition to individual counseling, can help everyone communicate and feel heard. 

It is important that you acknowledge that the emotional aspects of this condition can affect all family members and seek professional help in dealing with the stress, anxiety, uncertainty, and/or depression that you could be facing.

Physical

Dravet syndrome can cause a range of physical mobility limitations. These characteristically include diminished muscle tone and a hunched-over gait (walking). Depending on the specific level and type of impairment, support for preventing injuries and physical complications should be tailored to a child’s specific needs.

A child might benefit from:

• A pillbox or an electronic pillbox with reminders to take medications when needed
• Assistive mobility devices, such as a walker to improve mobility and help prevent falls
• A supportive brace to prevent complications that can develop, including spine malformations or other bone changes due to weakness
• A warming or cooling blanket to prevent fevers or other temperature changes that can trigger a seizure 
• Adjusting computer or other electronic device settings to prevent lights from potentially triggering a seizure 

You and your family, professional caregivers, and healthcare providers involved in the child’s care may also consider other personalized ways to maintain comfort and prevent complications of Dravet syndrome.

Social

The range in the degree of cognitive and intellectual impairment with Dravet syndrome can interfere with a person’s ability to interact with others.

You can help a child by gauging their interest in socializing. They might want to make friends, interact with others at school, camp, or work, or they might want to people-watch. Determining the right dose and type of socialization that the child in your care needs, and trying to facilitate that process, can help improve their quality of life.

Social isolation is a problem for a person living with Dravet syndrome and their family. Parents may be able to get a break and feel less isolated if they can get caregiving help for the child in their care. This may come from asking trusted friends or family members, or from professional caregivers.

Support Groups

For a person who is living with Dravet syndrome, meeting with others who have similar disabilities and who are in the same age group can be beneficial.

You could ask a healthcare provider for a recommendation for a support group for people who have developmental and epileptic encephalopathies. Or, you can try to look for a group specifically dedicated to Dravet syndrome.

Additionally, groups for parents or siblings can offer peer support, comfort, and practical advice. Local groups or an online group could be sought out for these purposes.

If you are a guardian, be intentional about ensuring the safety of your child while they are in communication with others, whether it is in person or online.

Practical

With Dravet syndrome, your child will likely need accommodations to participate in recreation, school, and work. The seizures and physical and cognitive limitations of the condition often make regular activities impossible or dangerous.

Ask a child’s healthcare provider, or a pediatrician, to refer you to a case manager who works with other children with similar disabilities. Be sure to apply for the services that the child in your care qualifies for, and ask your case manager for help if you need it. 

Accommodations can include:

• Camps or recreational activities that are safe for people who have disabilities 
• School programs for children who have disabilities 
• Employment programs that are tailored for adolescents and adults who have disabilities
• Transportation assistance 

These services can improve your child’s quality of life, and they can maximize their ability to achieve and enjoy what they can to the best of their abilities. 

Full-Time Nursing Home Care 

If the growing child in your care with Dravet syndrome needs help beyond your ability, you might need more help than you could get in your own home.

Challenges that you might not be able to manage at home include:

• Eating and drinking
• Bathing
• Using the toilet
• Mobility
• Uncontrollable seizures
• Behavioral issues

Families can have difficulty deciding whether it is better to take care of their loved one at home or in a facility with full-time professional care. You can get professional assistance with defining your family’s needs to understand better what types of services you should seek.

Sometimes an adult living facility is the best choice for families who need professional care. Consider visiting nearby group homes so you can see what they have to offer as you make your decision. 

A Word From Verywell 

Coping with Dravet syndrome requires planning and having a support structure of medical professionals, community, and family. You can reach out for guidance to help navigate the issues that arise when living with Dravet syndrome.

It’s important that you seek help, and not just when you feel overwhelmed. Even when things seem under control, assistance will be beneficial.