Paroxysmal phenomena in severe disabled children with refractory seizures. From clinical to long-video-EEG processing data to re-examine suspect events.
Up to 39% of labeled seizures in institutionalized children with severe disabilities are misdiagnosed, leading to needless medication.
01Research in Context
What this study did
Doctors watched children with severe disabilities in a residential home. They used long video-EEG to check if sudden staring or jerking was a real seizure.
Every child had already been labeled epileptic. The team wanted to see how many labels were wrong.
What they found
Only 11% of the strange events were true seizures. 39% were not seizures at all. The rest stayed unclear.
Many kids were taking seizure drugs they might not need.
How this fits with other research
Burack et al. (2004) said we should add caregiver interviews and direct observation. Salvatore et al. did exactly that and proved the interviews catch mistakes.
Baker et al. (2005) gave us the SEIZES B scale to track drug side effects. The new study shows why we need that scale: wrong meds create side effects for no gain.
Pierce et al. (1994) found people in institutions often get older seizure drugs. Salvatore warns these drugs may be started after a wrong diagnosis, doubling the risk.
Why it matters
If you work in a home or school for children with severe disabilities, question every seizure report. Ask for video-EEG before raising the dose or adding a second drug. Push the team to record exact times and videos of the events. You could spare a child heavy sedation and side effects.
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02At a glance
03Original abstract
To provide an estimate of the occurrence of misdiagnosis in paroxysmal events in institutionalized children with severe disabilities and refractory epilepsy. A multi-step diagnostic survey, from observational to long-term video-EEG monitoring was performed in 46 severe disabled children. Multirater Kappa statistic was used to assess agreement between investigators and to individualize children who remained with dubious events. Subsequently, prolonged EEG-video monitoring analysis was performed in selected children to define phenomena due to seizures. A total of 128 video records were performed, 64 routine video-EEG and 27 long-monitoring video-EEG data were screened for detailed analysis. Thirty (21 female, 9 male) children (65%) with dubious seizures were identified by video records (concordance K=0.63). Of these, in 18 children (39%) seizures were excluded by routine video-EEG monitoring (K=0.86). Twelve children (26%) required accurate investigations with long-term video-EEG. In 5 children (11%), 3 symptomatic and 2 cryptogenic, very short and subtle seizures were confirmed by investigators concordance (K=0.83). Distinguishing paroxysmal phenomena is a challenge in children with severe disabilities; its most remarkable consequence is inappropriate pharmacological treatment and social costs. Our data suggest that the frequency of misdiagnosis could have been underestimated. The clinicians who manage children with severe disabilities and refractory epilepsy must remain alert to risk of an incorrect treatment.
Research in developmental disabilities, 2015 · doi:10.1016/j.ridd.2014.08.040