Palliative Pearls: Acute Seizure Management in Pediatrics

Seizures are common in children receiving palliative care, particularly in those with underlying developmental or neurologic disorders. As death approaches, seizures may also occur in children with no prior seizure history because of terminal physiologic changes such as abnormalities in glucose, calcium, or sodium, other metabolic disturbances, or hypoxia.1 Many of these patients already receive a daily antiseizure (antiepileptic) medication to maintain seizure control. For patients who are stable on their current regimen, interrupting therapy or switching medications because of formulary restrictions or cost may trigger breakthrough seizures.

In patients taking no oral medications and with no feeding tube nor intravenous access, rectal administration of antiseizure medications is possible. This is also an opportunity to revisit goals of care and whether antiseizure medications should continue, especially if prognosis is short.2 For more information on rectal administration, refer to our Palliative Pearls clinical feature “Anticonvulsants and Rectal Use: Best Practices” or the PCNOW Fast Fact “Palliative Care Per Rectum”.3

Regardless of whether a medication change has occurred, clinicians and caregivers should have a clear plan in place for acute seizure management. This article provides a brief outline of assessment and supportive care modalities as well as suggestions and considerations for the treatment for acute seizures, or generalized convulsive status epilepticus (CSE), in children and adolescents older than 4 weeks of age.

ASSESSMENT & SUPPORTIVE CARE

In children with CSE, assessment and application of supportive care, outlined below, must occur simultaneously with prompt administration of medications.1 In children receiving hospice care, goals of care may limit the ability to assess and provide this support. It is important to prepare both clinicians and caregivers for the treatment plan, with appropriate steps and actions when acute seizures occur, given the patient’s situation and care setting.

CSE treatment goals include:1

  1. Establish and maintain adequate airway, breathing, and circulation
    • Obtain and periodically monitor vital signs
    • Identify airway obstruction and hypoxemia and manage accordingly
    • Identify impaired oxygenation or ventilation and manage accordingly
  2. Identify and treat hypoglycemia (obtain rapid bedside blood glucose, if feasible)
  3. Identify and treat life-threatening causes of CSE, as appropriate, such as trauma, sepsis, meningitis, encephalitis, or structural brain lesion.
    • In patients receiving hospice care, this may mean providing supportive measures only, with the understanding that more aggressive management typically requires hospitalization and may not align with the goals of hospice care.
  4. Stop the seizure through appropriate pharmacotherapy and thereby prevent brain injury

MEDICATION TREATMENT APPROACH & TREATMENT

Treatment of acute seizure, or generalized convulsive status epilepticus (CSE) usually begins with fast-acting benzodiazepines, followed by intravenous antiseizure agents if the seizure persists or escalates, followed by continuous infusion therapy when seizures continue despite all earlier attempts to stop them.

While intravenous (IV) administration of medication is preferred, intramuscular, rectal, nasal, and buccal routes of administration are alternative options when IV access is limited, especially for initial therapy in the home setting.4

Important considerations of medication therapy before initiating a treatment plan include:

  • Some administration practices are off-label, indicating the absence of Food & Drug Administration (FDA) approval for the indication or route of administration, and often, the lack of strong scientific data for safety and/or efficacy. It is recommended that the prescriber be experienced with these therapies, and clinicians and caregivers be educated on proper use.
  • Certain medications and devices for administration may be subject to availability from your pharmacy provider:
    • Midazolam solution for injection administered off label intranasally, requiring a mucosal atomization device (MAD)5 used to reduce a solution to a fine spray directly in the nasal passage
    • Compounded diazepam suppositories administered per rectum
  • It may be difficult to safely and adequately administer and monitor pharmacotherapy for persistent and refractory seizures in home settings

Initial Therapy: Benzodiazepines (BDZ) (Tables 1 & 2)

IV Access Established

  • Lorazepam soln for injection, given IV (preferred)
  • Diazepam soln for injection, given IV

No IV Access

Commercial products:

  • Diazepam rectal gel
  • Diazepam and midazolam nasal sprays

Subject to availability from pharmacy provider:

  • Off-label use of parenteral diazepam per rectum
  • Off-label use of parenteral midazolam intranasally (requires a mucosal atomization device (MAD))
  • Compounded diazepam suppositories per rectum

Persistent CSE: Antiseizure Medications (Table 3)

10 to 30 minutes after the 2nd dose of  BDZ:

  • Levetiracetam (Keppra®, given IV OR
  • Fosphenytoin (Cerebyx®), given IV OR
  • Valproate (Depacon®), given IV OR
  • Phenobarbital, given IV

Refractory CSE: Infusion Therapy or Palliative Sedation

30 minutes after initial measures (2 doses of BDZ followed by an antiseizure medication)

  • 2nd antiseizure med not utilized yet, given IV, THEN
  • Prepare for continuous IV infusion with midazolam or pentobarbital (requires mechanical ventilation and cardiovascular and EEG monitoring) OR
  • Consider palliative sedation via alternative routes with less intensive monitoring

Initial Therapy: Benzodiazepines

Stage I of CSE is described as ongoing convulsions for more than 5 minutes and is managed initially with benzodiazepine therapy.6

Persistent CSE: Antiseizure Medications

Stage II of CSE is described as prolonged seizure activity with convulsions, or recurrent seizures without regaining consciousness in between, lasting from 10 to 30 minutes after the 2nd dose of BDZ, and is managed with a loading dose, and then maintenance dose, of antiseizure medication.2,6,14

Refractory Seizures: Continuous Infusion or Palliative Sedation

Stage III of CSE is described as seizure activity continuing despite stage I/II treatment, lasting 30 to 60 minutes6,14 and, in institutional settings, is managed with continuous infusion of antiseizure sedative. Midazolam is preferred; however, pentobarbital may be commonly used.2 Guidelines for managing CSE recommend that these infusion therapies be accompanied by mechanical ventilation, cardiovascular monitoring, and continuous EEG monitoring.7

Because many hospice patients receive care at home, infusion medications, administration devices, and monitoring equipment used for stage III CSE may be unavailable or difficult to access. This limitation highlights the importance of early collaboration among the hospice team and caregivers to clarify goals of care and develop a seizure management plan before an acute event occurs. In the home setting, Stage III CSE may be managed with palliative sedation using medications that can be given by alternative routes (e.g., phenobarbital per rectum) and require less intensive monitoring. Palliative sedation is outside the scope of this clinical feature; for an overview, refer to the PCNOW Fast Fact Directory entry on “sedation.”15-17

CAREGIVER SUPPORT

Educate caregivers about all medications used to manage seizures, including adverse effects such as sedation and respiratory depression. Caregivers who have witnessed previous seizures may fear recurrence, so anticipatory guidance is important. Hospices should establish seizure protocols and ensure that necessary medications and administration devices are available in the home when possible. Collaborate with the hospice interdisciplinary team to develop an acute seizure plan that reflects patient-specific goals of care. Review the plan and seizure safety measures with caregivers, set appropriate expectations, and keep the patient’s comfort of the center of all decisions.2

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Citations

  1. Weaver M, Carter B, Keefer P, Korones DN, Miller EG. Essential Practices in Hospice and Palliative Medicine, 5th edition. UNIPAC 7: Pediatric palliative care and hospice. Shega JW, Paniagua MA, (Eds): Chicago, IL; AAHPM, 2017.
  2. Connelly J, Weissman DE. Seizure management in the dying patient. In: Palliative Care Network of Wisconsin Fast Facts Directory. Mar 1, 2019. Link
  3. Samala R, Davis M. Palliative care per rectum. In: Palliative Care Network of Wisconsin Fast Facts Directory. Mar 2, 2019. Link
  4. Drislan F. Convulsive status epilepticus in adults: Management. In: UpToDate, Garcia PA, Edlow JA, Rabinstein AA, (Eds). Wolters Kluwer. (Accessed May 18, 2026)
  5. MAD Nasal™ Intranasal Mucosal Atomization Device. In: Teleflex Incorporated [online]. Accessed 2026 May. Link
  6. Trinka E, Hofler J, Litinger M, Brigo F. Pharmacotherapy for status epilepticus. Drugs. 2015; 75:1499-1521.
  7. Wilfong A. Management of convulsive status epilepticus in children. In: UpToDate, Nordli DR, Torrey SB, Dashe JF, Wiley JF, (Eds). Wolters Kluwer. (Accessed May 18, 2026)
  8. NHPCO Pediatric Advisory Council. Pediatric E-Journal: Pain and Symptom Management in Pediatric Palliative and Hospice Care. NHPCO; 2023 Dec. PDF
  9. Clinical Pharmacology [database online]. Tampa, FL: Elsevier/Gold Standard, Inc.; 2026.
  10. UpToDate Lexidrug [database online]. Wolters Kluwer; 2026.
  11. Valtoco® [package insert]. San Diego, CA. Neurelis, Inc. 2025. Link
  12. Dhillon S, Oxley J, Richens A. Bioavailability of diazepam after intravenous, oral and rectal administration in adult epileptic patients. Br J Clin Pharmacol. 1982;13(3):427-432.
  13. Kanto J. Plasma concentrations of diazepam and its metabolites after per oral, intramuscular, and rectal administration. Correlation between plasma concentration and sedatory effect of diazepam. Int J Clin Pharmacol Biopharm. 1975;12(4):427-432.
  14. Droney J, Hall E. Status epilepticus in a hospice inpatient setting. J Pain Symptom Manage. 2008; 36(1): 97-105.
  15. Salacz M, Weissman DE. Controlled Sedation for Refractory Suffering – Part 1. In: Palliative Care Network of Wisconsin Fast Facts Directory. Jan 4, 2024. Link
  16. Salacz M, Weissman DE. Controlled Sedation for Refractory Suffering – Part 2. In: Palliative Care Network of Wisconsin Fast Facts Directory. Apr 3, 2024. Link
  17. Newcomer K, Merkelz K, Tatum P, Dalton H. Palliative Sedation in the Home Setting. In: Palliative Care Network of Wisconsin Fast Facts Directory. Oct 13, 2022. Link