Post-Epilepsy Surgery Behavioural Changes/Disorders

Dr Christin Eltze and Nicola Barnes, GOSH

Disclosures

• CE was PI for studies sponsored by GW Pharma
• CE has contributed to and chaired sponsored educational events
  activities by GW Pharma and Nutricia (fees to departmental funds)

Tom

Syndrome diagnosis: Lennox –Gastaut Syndrome

• Birth history: uncomplicated (term NVD)
• Seizure onset: age 4 m → infantile spasms (responsive to VBT + Prednisolone)
• Seizure recurrence age 15 m → multiple seizure types (epileptic spasms, tonic sz drop sz)
• Evolution with global delay and profound intellectual difficulties, drug resistant epilepsy
• @ age 3 years:
  • presurgical evaluation (CESS) – MRI: FCD right frontal lobe, ictal EEG (spasms)
    variable lateralisation, subclinical seizures with onset either hemisphere
  • Pre-surgical counselling: 50 % chance of seizure freedom
  • Right frontal lobe resection ( histology non-diagnostic )
• Seizure free for 3 months post surgery – then recurrence (multiple sz types incl drop
  seizures)
• VNS implanted age 6 years → no benefit in sz reduction

Tom – Progress – age 10 years

• Impaired mobility (unsteady gait – frequent drop seizures, required wheelchair)
• Communication: single words and gestures.
• Generally ‘happy’ but – Behaviour at times challenging:
  • self-induced vomiting; episodes of screaming and
    aggressive behaviour (pinching), Spitting
• ASMs: valproate and clobazam
• Referred to back to CESS –
  • underwent Corpus Callosotomy

Tom – post- Corpus Callosotomy

• Seizure free initially → more alert & socially engaging
  • Mobility improved – walking independently at home
• 4 weeks post-op: refusal to eat and drink, non-compliance with ASMs
  • Seizure recurrence (nocturnal seizures ) – hospital admission
  • Required – feeding support with NG-tube and then gastrostomy
• 4 months post-op: increase of tonic seizures (nocturnal) + atypical absences
  • Behavioural deterioration:
    • aggressive behaviour, self-harming (head banging)
    • Brain MRI – postoperative changes only, CC – complete; EEG – confirmed – not in
      NCSE
    • Around the time underwent dental treatment under GA

Reasons for behaviour change, How we can support

• Prior to CAHMS referral all medical reasons for distress ruled out
• Have we woken up the child , now see true personality ????

Behavioural outcomes after Corpus Callosotomy

• Little information in literature
• Sharawat e al 2021, Child’s Nervous System (2021) 37:2557–2566 Efficacy and safety of CC and KD in LGS
• CC: 23 studies (436 patients)
  • Average age at CC was 11.3 ±7.8 years, and the average time from seizure onset to CC was 8.6±6.9 years
  • Average follow up 43.2±29.7 months.
  • Seizure free: 40.78% (95%CI—28.24–53.33%); ≥ 50 % sz reduction 85% (anterior CC in 177/436)
• Only 5 studies assessed cognition and behaviour
• Improvement in behaviour and communication reported in 69%

Behavioural outcomes after Corpus Callosotomy

Lea, right handed, referred age 13 years

BMI > 99.6th centile

• Birth History: uncomplicated (term, NVD ); Early development – normal
• Seizure onset: age 2.5 years, prolonged left focal motor (25 minute duration)
• Focal seizures: aura: “stomach ache” evolving to bilateral tonic clonic seizures
• Drug resistant (failed 3 ASMs incl Levetiracetam not tolerated (aggressive behaviour)
• Learning difficulties – attends special school (does not like school)
• Behaviour: no behavioural concern, but peer-relationship difficulties – no friends
• Referred to CESS age 14 years, local brain MRI report 4– lesion negative (degraded by movement artefacts)
  • Optimised MR imaging: right temporal lobe incl hippocampus/amygdala decreased grey/white differentiation,
  • FDG-PET: right temporal hypometabolism
  • VT-EEG : sz semiology – right mesial temporal onset, fear, preserved speech
  • Neuropsychology: weakness in language , memory difficulties , ASD assessment recommended
• @ Age 16year 9 months: right anterolateral temporal lobectomy + amygdalohippocampectomy• (histology hippocampal sclerosis)

Low mood on discharge home

• Recovered well from surgery – discharged her on day 4
• Some anxiety observed before going home, reassurance given
• Post op call day 10: low appetite, refusing to leave bedroom , general lethargy, reporting abdominal aura but no sz
• 2 week post op: frequent calls from family, she was withdrawing from social media, crying +++ with one event of unresponsiveness, not typical of pre op events
• Review at GOSH for wound review – panic attack once home requiring local hospital assessment
• 4 weeks post op: psychiatrist review, low mood, no appetite, tearful, struggling to sleep , poor energy and no motivation. Was only settled if brought by father to GOSH reception to sit for a few hours every day and wished to be readmitted to hospital

Assessment and support

• Impression:
• Post-operative low mood, possibly adjustment reaction with generalised anxiety and a panic attack. This seems to be related to concerns about her feeling safe (on the ward) and some worries about her physical health (auras, pain and anxiety around seizures).
• Unable to facilitate readmission to ward, distraction techniques to encourage returning to usual activities she enjoys, cooking, TikTok
• https://www.nhs.uk/mental-health/children-and-young-adults/advice-for-parents/anxietydisorders-in-children/
• https://www.childline.org.uk/toolbox/calm-zone/
• https://hampshirecamhs.nhs.uk/wp-content/uploads/2018/03/Self-help-Workbook-Children-
  1.pdf
• Promotion of sleep hygiene
• Phased return to college
• Local CAHMS referral : sertraline prescribed, diagnosis of depression

Now

• 18 years old: continues on topiramate and sertraline
• Post op EEG captured ongoing abdominal pain, staring reduced responsiveness: not epileptic
• No seizures or aura reported since May 2024
• Dad reports that her mood is much better on sertraline
• She comes out of her room and mixes with the family and siblings
• She still can have low mood and can cry a lot. She can also get angry quickly, but laughs too
• There is ongoing CAMHS input
• She is happy she has lost weight
  
  

Psychiatric outcomes after temporal lobe surgery

Do behavior and emotions improve after pediatric epilepsy surgery? A systematic review

C Reilly et al (Epilepsia. 2019;60:885–897.)

• 15 studies included (mostly High Income Countries)
• 12 of 15 TLEs surgery, ample size 28-100, 4/15 had control group
  • 12/15 used standardised tools (CBCL, SDQ)
  • Quality: 5/15 – moderate, 10/ 15 weak
• No study noted deterioration of behavior
• Studies using DSM – no significant change of children diagnosed at baseline and follow up (resolution of diagnosis in 21 and in 16 new diagnoses)
• Better seizure control associated with improvement

Pre surgical assessment

• CESS pathway allows neuropsychology testing of cognition, memory and language
• Neuropsychiatry assessment of mood of family, expectations for surgery, mood, may ask local CAHMS for involvement to support further diagnosis assessment of ASD, ADHD

Self injurious behaviour following epilepsy surgery

• SIB defined as self inflicted non accidental acts causing damage or destruction of body tissue, carried out without suicidal ideation or intent: self biting , self hitting , teeth grinding , object finger in cavities and hair pulling
• Assessment: psychiatric history , social needs and risk assessment
• Rule out medical causes , depression and ADHD, hyperactivity, impulsivity
• SIB can be chronic or refractory, premise for behaviour can be maintained by socially medicated reinforcement i.e. acquisition of instrumental/communicative functions, or alternately by automatic reinforcement, i.e. that there is a sensory seeking component. There is always a reason for challenging behaviour. It may not be easy to see at first. It is the child’s best attempt at telling you something.

Interventions

• ADHD, stimulant medication is generally safe and effective in children with epilepsy
• Positive Behavioural Support (PBS) patient centred, individualised approach, MDT support essential
• Functional Assessment: Aim to identify events that typically precede and follow episodes of self injury in order to form a hypothesis regarding factors eliciting and maintaining the behaviour. Use of an Antecedent–Behaviour–Consequence (ABC) checklist.
• Intervention
• Short term Non Contingent reinforcement
• Long term Implement a PBS traffic light system
• Green, keep child in green zone when behaviour is regulated, simple communication, positive reinforcement, set boundaries with PECS, visual planners, routine and structure
• Amber, recognise early warning signs, give the child what they want, divert or distract, do not respond if safe to do so, stay calm
• Red, behaviour is happening, divert, distract, low arousal approach, calm, regulate breathing, personal space

Pharmacological Management (Claire Eccles)

• Pharmacological Management- Consider STOMP/STAMP. Limited meta-analysis evidence for both antipsychotics or ASM and SIB unlikely to respond. Review NICE guidance.
• The guidance is clear that antipsychotic medication should only be used for challenging behaviour if:
  • Psychological or other interventions alone do not reduce the challenging behaviour within an agreed time, or
  • Treatment for any mental or physical health problem has not led to a reduction in the behaviour, or
  • The risk to the person or others is severe (for example because of harming others or self-injury).
• General principles:
  • Identify target behaviour, Start low and go slow (increased risk of EPSEs and NMS), Regular review after 3-4 weeks, Stop medication if no response in 6 weeks.
  • Risperidone is licenced for short-term use (up to 6-10 weeks) for persistent aggression.

References

1. Yates, TM (2004) The developmental psychopathology of self-injurious behavior: compensatory regulation in posttraumatic adaptation. Clinical Psychology Review, 24: 35–74.10.1016/j.cpr.2003.10.001
2. Biswas A, Gumber R, Furniss F. Management of self-injurious behaviour, reducing restrictive interventions and predictors of positive outcome in intellectual disability and/or autism. BJPsych Advances.2023;29(5):337-341. doi:10.1192/bja.2022.49
3. NICE Guidance [NG11] Overview | Challenging behaviour and learning disabilities: prevention and interventions for people with learning disabilities whose behaviour challenges | Guidance | NICE

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