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Kendall, age 18, actual patient on DIACOMIT

Teens and Adults

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.

Positive Change in Seizures

The good news is that as children get older, the number and length of seizures may decrease. 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

Kendall and Jill’s Dravet Journey

Follow Kendall’s long-term seizure management journey with DIACOMIT as told by her mother and caregiver, Jill.

img banner Kendall, age 18, actual patient on DIACOMIT

After DIACOMIT, Kendall went from having two or three seizures a week to maybe four over eight or nine years.

Jill, mother and caregiver

Results may vary 

Secondary School Support

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

Mental Health and Dravet Syndrome

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.

Find a Mental Health Provider
  • Adolescence is full of changes and transitions that can interrupt routines and cause stress.
  • Ask your current doctors for referrals to mental health professionals who have experience with teens with disabilities.
Explore Extracurricular Activities
  • New and engaging activities such as art, music, and some types of physical activity can help your teen improve their cognitive skills and self-esteem.
  • Talk to your doctor about safe activities for your teen.
Discover Peer Groups
  • Local support groups and camps for teens with seizure disorders can give your teen a space to interact with peers who understand what they’re going through.
  • Caregivers deserve support too. The Dravet Syndrome Foundation offers a Family Network to help you connect with other families affected by Dravet.

Transitioning Into Adulthood

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

  • Conservatorship
  • Job training and employment programs for adults with disabilities
  • Full-time or part-time paid caregivers
  • Long-term care facilities or residential communities for adults with disabilities

The Dravet Syndrome Foundation offers further resources and support for caregivers of adults with Dravet syndrome. Learn more at the Dravet Syndrome Foundation website.

img banner Not an actual patient
Dravet Syndrome and DIACOMIT Resources

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Accessing DIACOMIT

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