Intractable Seizures - Paediatric Palliative Care
Description General and supportive treatment Medicine treatment Referral ICD-10 code: G41 For status epilepticus, see: Status Epilepticus (Convulsive). DESCRIPTION Intractable seizures in palliative care refer to seizures that do not respond to treatment and often occur at the end of life in children with severe CNS pathology who are not candidates for ventilation. These may range from repe
General and supportive treatment
ICD-10 code: G41
For status epilepticus, see: Status Epilepticus (Convulsive).
DESCRIPTION
Intractable seizures in palliative care refer to seizures that do not respond to treatment and often occur at the end of life in children with severe CNS pathology who are not candidates for ventilation. These may range from repetitive self-limiting seizures that do not cause distress to constant fitting not responsive to treatment. Causes include brain tumours, neuro-degenerative diseases, inborn errors of metabolism, severe congenital structural malformations including migrational disorders, and brain damage secondary to trauma or hypoxia.
GENERAL AND SUPPORTIVE TREATMENT
- Counselling support for parents, caregivers and professional care-giving staff.
- Reassurance if seizures are brief and not causing any obvious distress.
- Prevent secondary trauma by padding the side of the bed/cot or nursing on the floor.
- Do not restrain the patient as it may make seizures worse.
- Nurse on the side to minimize aspiration.
- If at end of life, stop feeds and follow guidance see: End of life and Terminal care.
MEDICINE TREATMENT
These children have often already been treated as per status epilepticus protocols but have not responded to standard treatment. In children at the end of life or with poor prognosis, where admission to ICU for thiopentone infusion is not recommended, the mainstay of treatment is midazolam infusion to provide terminal sedation. (Consider subcutaneous infusion if no IV access is available.)
- Midazolam by SC or IV infusion over 24 hours for seizure control at end of life:
- Neonate to 18 years: Initial dose: 1–3 mg/kg/24 hours increasing up to 7 mg/kg/24 hours (maximum 60 mg/24 hours or 150 mg/24 hours in specialist units for patients with refractory epilepsy).
- Morphine SC or IV infusion at 10–20 mcg/kg/hour titrated upwards in 30% increments against pain.
REFERRAL
- Seek specialist advice and consider addition of other agents.
Standard Treatment Guidelines And Essential Medicines List For South Africa, Hospital Level, Paediatrics, 2023 Edition
Chapter: 21. Palliative Care, 21.1 Symptom Control, 21.1.3 Neuropsychiatric Symptoms, 21.1.3.4 Intractable Seizures