Paediatric Palliative Care Guidelines
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Edition/Revision: 4.0
Validated 22 Oct 2016

Fitting / seizures

  • Most commonly seen in the palliative care setting in children with neurodegenerative disorders or intracranial malignancy
  • Children with neurodegenerative disorders will often already be on multiple anticonvulsant medications and their parents/ carers will be knowledgeable about recognising and treating fits. For these children fits are often variable in type and may become frequent and severe and more difficult to control towards the end of life
  • Children with intracranial malignancy will not necessarily develop fits. However, for those who do, it is a frightening new symptom for the child and carers to learn how
    to manage. If fits are likely, children should be considered for prophylactic anticonvulsants; parents should be warned what to expect, have midazolam available at home, and know how to administer it
  • Not all fits are full blown, more subtle characteristic behaviours may also represent seizure activity
  • Investigation and treatment of persistent fitting should be tailored to the child’s stage of illness and will require discussion with senior doctors and family

Consider causes and treat as appropriate:

The emergence of, or increasing frequency/severity of fits may be caused by worsening disease but other potentially reversible factors should be considered:

  • Hypoglycaemia
  • Electrolyte imbalance
  • Sub-therapeutic anticonvulsant medication
  • Infection e.g. UTI
  • Raised intracranial pressure/ other intracranial pathology
  • Choice of baseline anticonvulsant depends on the type of fit and is beyond the remit of this text
  • Children with neurodisability with severe seizure disorder may require three antiepileptic medications
  • Withdrawal or addition of anticonvulsants should be cautious as most agents need to be tailed off or titrated (see appropriate text)
  • Higher doses of anticonvulsants are required for children < 3yr because of a higher metabolic rate and more efficient drug clearance. Have a low threshold for consulting your local paediatric neurologist for advice on seizure control
  • Not all fits require treatment
  • The burdens and benefits of treatment should be carefully considered before embarking on treatment
First presentation of seizures

It is usually appropriate to follow local standard guidelines for seizure management including transfer to hospital and consideration of intensive care if seizures are not controlled. First presentation of seizure, particularly if it is unexpected, is very distressing for family and siblings, they will need support and explanation.

Previous presentations of seizures

The child may have a management plan in place including decision-making around hospital admission, and escalation of medication doses. Parents may have become used to managing these events and are often less distressed.

Persistent fits / status epilepticus

Management will differ according to the child and their situation and whether avoiding hospital admission is a priority.

  • Aim to secure airway, give high flow O2 and stop fit
  • Exclude hypoglycaemia, particularly in the very young
  • If fits last >15 minutes, consider checking U&E, glucose, calcium, drug levels and sending urine ± blood for culture (if appropriate to child and situation)

Seizures should be treated according to local seizure management protocols based on APLS guidance e.g. using buccal midazolam, NG/PR diazepam, paraldehyde and/or IV lorazepam.

Fitting at the end of life (or when hospital admission is to be avoided)
  • Fits may become more frequent and more difficult to control at the end of life
  • Children are likely to have stopped taking regular anti-convulsants orally
Medication for fitting at the end of life

First line treatment should be with a continuous infusion of midazolam, adding in phenobarbitone if fits persist despite doses below:


Injection: 10mg in 2mL; 10mg in 5mL.

Injection may be diluted if required, in sodium chloride 0.9% or glucose 5%. Injection can be used for buccal, intranasal, oral or rectal administration.

Oral solution (2.5mg/mL unlicensed), buccal liquid (5mg/mL Buccolam®). Other oral and buccal liquids (e.g. Epistatus® 10mg/ml) are also available from ‘specials’ manufacturers or specialist importing companies (unlicensed).


Neonate: 300µg/kg as a single dose, repeated once if necessary,
Child 1–3 months: 300µg/kg (maximum initial dose 2.5mg), repeated once if necessary,
Child 3 months–1 year: 2.5mg, repeated once if necessary,
Child 1–5 years: 5mg, repeated once if necessary,
Child 5–10 years: 7.5mg, repeated once if necessary,
Child 10–18 years: 10mg, repeated once if necessary.

By buccal or intranasal administration for status epilepticus, should wait 10 minutes before repeating dose.

By SC or IV infusion over 24 hours:

Neonate (seizure control): 150 µg/kg IV loading dose followed by a continuous IV infusion of 60 µg/kg/hour. Dose can be increased by 60µg/kg/hour every 15 minutes until seizure controlled (maximum dose 300µg/kg/hour),
Child 1 month – 18 years: Initial dose 50µg/kg/hour increasing up to 300µg/kg/hour (maximum 100mg/24 hours or 150mg/24 hours in specialist units).

Note: Midazolam is often effective in children with seizures related to cancer. However in children with neurodisability normal doses of Midazolam are usually ineffective and Phenobarbital is often a more useful first line drug.


Can be given as a continuous subcutaneous or intravenous infusion and has anticonvulsant and anxiolytic properties


Injection: 200mg in 1mL

Loading dose: Oral, intravenous or subcutaneous injection:

All ages: 20mg/kg/dose (maximum 1g) administered over 20 minutes if by IV or SC injection (For patients already on oral phenobarbital but needing parenteral treatment, doses equivalent to the patient’s usual total daily dose of oral phenobarbital can be used).

Subcutaneous or intravenous injection or infusion:

Neonates for control of ongoing seizures: 2.5-5 mg/kg once or twice daily as maintenance,
Child 1 month- 12 years: 2.5-5mg/kg (maximum single dose 300mg) once or twice daily or may be given as a continuous infusion over 24 hours,
Child 12-18 years: 300mg twice daily or may be given as a continuous infusion over 24 hours.

Review dose after 1 week as drug induces its own metabolism and therefore the dose may need increasing.

Requires separate syringe driver (does not mix)

Edition/Revision: 4.0
Created 20 Oct 2016
Validated 22 Oct 2016 by Ian Back
Last modified 22 Jun 2021
Tue 22 Jun 2021 10:56:26 GMT +0100 (DST)
Last modified 22 Jun 2021