Your child’s teenage years are full of emotional highs and lows as their bodies change and they seek independence. With Dravet syndrome, daily life may be even more challenging for your teen and your family, but there are resources to help your child navigate their teen years and transition into adulthood.
The good news is that as children get older, the number and length of seizures usually decreases. Although your child will continue to have seizures throughout their life, prolonged seizures and seizures that require hospitalization are less common. Each child’s development is affected differently by Dravet, and even though children with Dravet may experience learning delays, they are still able to learn new things and gain new skills.17,21,45
Most teens with Dravet syndrome have some degree of intellectual disability, behavioral issues, sleep difficulties, and/or motor impairments.17,45 That’s why finding an appropriate, supportive learning environment is very important.
Your teen will likely still need an individualized education program (IEP) in the upper grades. The IEP plan may change to set new academic and cognitive goals for your teen. Depending on their needs, your teen may still require a behavioral therapist, along with an occupational, physical, and/or speech therapist.45
As your teen transitions to high school, make sure that school personnel know about your teen’s diagnosis and basic seizure first aid. Exposures to triggers can change in a new environment, so revise your seizure action plan and give it to the appropriate school personnel, along with any rescue medication prescribed by your child’s doctor.41,43
Living with a rare disease can feel isolating, and some teens with epilepsy may recognize that they’re different from their peers. This can lead to feelings of anxiety or depression. There are steps you can take to help them.
As your teen enters adulthood, they will need a new medical team. It is important to establish a transition plan with your pediatric neurologist or epileptologist and any other pediatric providers with whom your teen has a strong relationship. A smooth transition may help reduce anxiety and build trust with the new care team.
The characteristics of Dravet syndrome will likely change as your child grows up. The burden of seizures may decrease, but cognitive, behavioral, and social issues may continue. Motor impairments can worsen, continuing to affect posture, gait, and mobility.17,21,45
As adults, some people with Dravet syndrome can live independently, but most will continue to live with family or in a supported living environment. With this in mind, you may want to explore options for:46
The Dravet Syndrome Foundation offers further resources and support for caregivers of adults with Dravet syndrome. Learn more at the Dravet Syndrome Foundation website.