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PubMed This is a summary of 28 peer-reviewed journal articles Updated
Neurology · Developmental and Epileptic Encephalopathy

Building Your Team and Staying Safe

At a Glance

Managing a Developmental and Epileptic Encephalopathy (DEE) requires a coordinated multidisciplinary team led by a pediatric epileptologist. Maximizing seizure control and utilizing nighttime monitoring are critical evidence-based strategies to reduce the risk of SUDEP in high-risk genetic DEEs.

Managing a Developmental and Epileptic Encephalopathy (DEE) requires more than just a single doctor; it requires a coordinated “medical home” that addresses every aspect of your child’s health and your family’s well-being [1][2]. Because DEEs involve multiple body systems, the goal is to build a multidisciplinary team that works together rather than in silos [3][4].

Your Multidisciplinary Care Roster

A comprehensive team for a child with DEE often includes:

  • Pediatric Epileptologist: A neurologist who specializes specifically in difficult-to-treat epilepsy and is familiar with genetic precision medicine [5][6].
  • Medical Geneticist: To help interpret complex genetic reports and stay informed about emerging gene-based clinical trials [7].
  • Complex Care Pediatrician: Often acts as the “quarterback,” helping to coordinate care between specialists and manage general health [1].
  • Gastroenterologist (GI): Essential for managing common DEE issues like severe constipation, reflux, or G-tube feeding [8].
  • Physical, Occupational, and Speech Therapists (PT/OT/ST): To support developmental progress, manage movement disorders (like ataxia), and assist with communication and feeding safety [9][4].
  • Social Worker or Care Coordinator: To help your family navigate insurance, school services, and the significant psychosocial impact of caregiving [2][10].

Understanding and Managing SUDEP Risk

Sudden Unexpected Death in Epilepsy (SUDEP) is a difficult but necessary topic for families of children with severe epilepsy. It refers to a death in a person with epilepsy that is not caused by injury, drowning, or a known illness [11].

Why Certain Genes Carry Higher Risk

While SUDEP is rare in the general epilepsy population, the risk is notably higher in certain genetic DEEs:

  • SCN1A (Dravet Syndrome): The risk is higher due to a combination of frequent convulsive seizures and potential heart rhythm issues (arrhythmias) during or after a seizure [12][13].
  • SCN8A: Research indicates a SUDEP risk of approximately 10% in this population, often related to cardiorespiratory failure following a seizure [14][15].

Evidence-Based Safety Strategies

While it may not be possible to eliminate risk entirely, research supports several strategies to improve safety:

  • Maximize Seizure Control: The most effective way to reduce SUDEP risk is to reduce the frequency of Generalized Tonic-Clonic Seizures (GTCS) [16][11].
  • Nocturnal Monitoring: Most SUDEP events occur during sleep [17]. Using baby monitors or specialized seizure-detection devices can help caregivers intervene quickly [18][19].
  • Post-Seizure Positioning: After a convulsive seizure, if possible, place the child on their side (the recovery position) to keep their airway clear and avoid them lying face-down (prone) [20][21].
  • Cardiac Screening: For children with SCN1A or SCN8A mutations, regular heart checks (ECGs) are often recommended to monitor for rhythm issues that may contribute to risk [22][23].

Vetting a New Specialist

When meeting a new neurologist, you have the right to ensure they have the expertise your child needs. Consider asking:

  1. “Are you familiar with the specific precision medicine guidelines for [Your Child’s Gene]?” [24][25]
  2. “How do you approach the use of rescue medications to prevent seizure clusters or status epilepticus?” [26]
  3. “Does your clinic have a dedicated Care Coordinator to help us manage our child’s multiple specialists?” [1]

Having an open, honest relationship with a knowledgeable team is your best tool for navigating the complexities of DEE [27][28].

Return to Home Page

Common questions in this guide

What type of doctors should be on my child's DEE care team?
A comprehensive team for developmental and epileptic encephalopathy should include a pediatric epileptologist, medical geneticist, and a complex care pediatrician. You may also need a gastroenterologist and various therapists to address feeding, communication, and movement challenges.
What is SUDEP and why is it a concern for genetic DEEs?
SUDEP stands for Sudden Unexpected Death in Epilepsy. While rare overall, children with certain genetic epilepsies like SCN1A (Dravet Syndrome) or SCN8A have a higher risk, often due to heart rhythm issues or breathing failure during or after a severe seizure.
How can I lower my child's risk of SUDEP?
The most effective way to reduce SUDEP risk is to maximize seizure control, particularly minimizing generalized tonic-clonic seizures. Other helpful strategies include using nighttime monitors, placing your child on their side after a seizure to keep their airway clear, and getting routine heart screenings.
What questions should I ask when vetting a new pediatric neurologist?
It is important to ask if they are familiar with the specific precision medicine guidelines for your child's exact genetic mutation. You should also ask about their approach to using rescue medications and whether their clinic provides a care coordinator to help manage multiple specialists.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.How many patients with this specific genetic DEE (e.g., SCN1A, SCN8A) do you currently manage in your practice?
  2. 2.How do you stay updated on the latest 'Precision Medicine' research and clinical trials for my child's specific gene?
  3. 3.What is your protocol for discussing SUDEP risk, and what specific safety measures do you recommend for my child's seizure types?
  4. 4.Can you help us coordinate with other specialists, like GI or Pulmonology, to ensure my child's non-seizure symptoms are managed?
  5. 5.When should we update our 'Seizure Action Plan,' and under what exact circumstances should we use rescue medications?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

References

References (28)
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This page provides educational information about building a care team and managing SUDEP risks for children with DEE. It does not replace professional medical advice from your child's pediatric epileptologist or care team.

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