Transitioning to adult care: A roadmap for Dravet syndrome parents
The years leading up to your child’s 18th birthday can bring new challenges, important decisions, and questions about the future. If your child is living with Dravet syndrome, planning ahead can help make the Dravet syndrome adult transition feel more manageable.
While the move from pediatric to adult care comes with new responsibilities, you don’t have to navigate it all at once. Taking steps early can help you feel more prepared and confident as your child enters adulthood.
Finding an adult neurologist with Dravet expertise
One of the most important parts of preparing for adulthood is establishing care with an adult neurologist who understands Dravet.
Because Dravet is a complex, lifelong epilepsy, not all adult neurologists will have experience managing the condition. Starting your search early gives you more time to find a provider who is a good fit for your child’s needs and your family’s goals.
Ideally, begin this process two to three years before your child turns 18. Your child’s pediatric neurologist is often the best place to start. Ask for referrals to adult epilepsy specialists or comprehensive epilepsy centers with experience treating rare genetic epilepsies. Academic medical centers and programs certified by the National Association of Epilepsy Centers may also be good options.
As you meet with potential providers for adult Dravet care, consider asking:
- Has this neurologist treated adults with Dravet?
- How does this specialist approach seizure management as the condition changes with age?
- Who should you contact during an emergency?
- Are there adult-focused clinical trial opportunities available?
- What does long-term care planning typically look like for this neurologist’s patients?
The Dravet Syndrome Foundation offers resources and a provider directory that may help you identify experienced clinicians. If possible, ask whether a transition appointment can be arranged so your child’s pediatric and adult neurologists can discuss care together.
Understanding legal guardianship
When children turn 18, they are legally considered adults. Even if they continue to rely on you for daily support, you may no longer automatically have the authority to make medical or financial decisions on their behalf.
Because these legal arrangements can take time, it is often helpful to begin exploring your options when your child is 16 or 17. Speaking with an attorney can help you understand which approach best fits your family’s situation.
Guardianship for Dravet syndrome is a court-approved arrangement that allows you to continue making decisions for your adult child. Full guardianship covers both healthcare and financial matters, while limited guardianship can be tailored to specific areas where support is needed.
Another option is a power of attorney (POA), which may be appropriate if your child is able to participate in decision-making. A healthcare POA allows your child to designate someone to make medical decisions if needed, while a financial POA covers legal and financial matters. For some families, this approach offers support while preserving more independence and self-determination.
Managing the switch from pediatric to adult hospitals
Transitioning from pediatric to adult neurology involves more than changing doctors. Adult healthcare systems often operate differently, and the shift can feel overwhelming for both you and your child.
Ask your current care team whether a transition coordinator is available to help guide you through the process. These professionals can often assist with referrals, records transfers, and appointment planning.
It can also be helpful to create a medical summary that includes details such as:
- seizure history
- current and previous medications
- known seizure triggers
- emergency care instructions
- genetic testing results
Having this information readily available can make the transition smoother and help new providers quickly understand your child’s needs.
The Dravet Foundation’s C.A.R.E. Binder may be a useful tool for organizing these records.
Planning for long-term residential or home care
Thinking about long-term care can feel emotional, but planning ahead gives you more options and more time to make informed decisions.
Whether your goal is to support your child at home or explore residential services in the future, early preparation can help reduce stress and ensure that appropriate supports are in place when they are needed.
Many families choose home care with in-home support services. Depending on where you live, Medicaid waiver programs may help cover personal care aides, day programs, therapies, and respite services for caregivers.
Because waitlists for these programs can be several years long, applying as early as possible may help your family access services when the time comes.
Residential options may include group homes, supported living arrangements, or specialized facilities for people with epilepsy and intellectual disabilities. As you evaluate programs, ask detailed questions about seizure management and emergency preparedness, including:
- How are seizures monitored overnight?
- Are staff trained to administer rescue medications?
- What emergency protocols are in place?
- How quickly can emergency medical services respond if needed?
While the transition to adulthood may bring new challenges, planning ahead can help you feel better prepared for what lies ahead. With the right support and resources in place, you can focus on helping your child continue to thrive upon entering this next stage of life.
Dravet Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
