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Treatment & Management

Anti-seizure medications are usually the first line of treatment for epilepsy. However, controlling seizures related to DEEs can be particularly difficult. Treatment varies from patient to patient and is based on a patient’s underlying condition.

Thus, an accurate diagnosis of the specific type of DEE can help to determine the most appropriate treatment. Treatment and management options for DEEs may include:1,2

  • Anti-seizure medications
  • Surgery
  • Vagus nerve or deep brain stimulation
  • Dietary management (eg, ketogenic diet)
  • Newer therapies (eg, cannabidiol, vigabatrin, ganalaxone, etc)
  • Immune and hormonal therapies
  • Occupational therapy, physiotherapy, speech therapy, and other allied health methods
  • Managing triggers and risks

Is Being Seizure-Free Possible with DEE Conditions?

Yes, it is. However, despite the availability of multiple medications for management of epilepsy—seizure freedom becomes increasingly unlikely with use of further lines of therapy. While first-line therapy in one study successfully controlled seizures in 45.7% of cases, second-line, and third-line therapy led to seizure freedom in only 11.6% of patients and 4.4% of patients, respectively.3 Moreover, in adults with undiagnosed DEEs, outcomes may be limited by a lack of a specific genetic diagnosis.4

Adapted from: Moos W, et al. Mitochondrion. 2023.2

However, Medications are Underused

Abundant evidence suggests suboptimal use of antiseizure medications, indicating a need for improving the use of medication in epilepsy, including DEEs. In one study, over one-third (36.7%) of patients with newly diagnosed epilepsy were untreated over 3 years of follow-up. Insufficient use of anti-epileptic medications in these patients was associated with a higher rate of medical events, hospitalizations, and emergency department visits—indicating a gap in the application of available therapies, even in patients with a definitive diagnosis.5

What Can I Do, As a Patient/Caregiver?

If you observe or suspect seizure activity in your child or yourself, see a doctor immediately. Don’t wait! Openly discuss medications and treatment methods and stay adherent to whatever medication or medications are prescribed. Also, ask as many questions as you can think of (write them down on a piece of paper for doctor visits), and educate yourself on seizures and how best to manage them. There are also support groups and several online resources to help you realize you are not alone!

References

  1. Epilepsy Foundation. Developmental and Epileptic Encephalopathy. Accessed August 23, 2024. https://epilepsyfoundation.org.au/understanding-epilepsy/rare-and-genetic-epilepsies/developmental-and-epileptic-encephalopaphy/
  2. Moos W, Faller D, Glavas I, et al. Epilepsy: Mitochondrial connections to the ‘Sacred’ disease. Mitochondrion. 2023;72:84-101. doi:10.1016/j.mito.2023.08.002
  3. Chen Z, Brodie MJ, Liew D, Kwan P. Treatment outcomes in patients with newly diagnosed epilepsy treated with established and new antiepileptic drugs: A 30-year longitudinal cohort study. JAMA Neurol. 2018;75:279-286. doi:10.1001/jamaneurol.2017.3949
  4. Beltrán-Corbellini Á, Aledo-Serrano Á, Møller RS, et al. Epilepsy genetics and precision medicine in adults: A new landscape for developmental and epileptic encephalopathies. Front Neurol. 2022;13:777115. doi:10.3389/fneur.2022.777115
  5. Kalilani L, Faught E, Kim H, et al. Assessment and effect of a gap between new-onset epilepsy diagnosis and treatment in the US. Neurology. 2019;92:e2197-e2208. doi:10.1212/WNL.0000000000007448

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