L’Association Tunisienne de Lutte Contre l’Epilepsie Parcours historique, objectifs et moyens

En 1972, sous l’impulsion d’un médecin, feu le docteur Mohamed Ben Salem, fut créée la Ligue Tunisienne Contre l’épilepsie qui adhéra immédiatement à la Ligue Internationale contre l’Epilepsie. La Ligue avait pour objectifs d’aider les citoyens souffrant de cette affection à se faire soigner, de faire progresser les connaissances concernant les épilepsies et de promouvoir une action sociale pour l’intégration des épileptiques. Ainsi, plusieurs actions étaient menées sur le plan social et plusieurs journées de formation et d’information furent organisées. Cette activité était maintenue et renforcée par les différents bureaux de la ligue (Tableau I) jusqu’à 1995

Epilepsie chez les personnes avec déficience intellectuelle

Epilepsy is a common chronic disease affecting preferentially patients with intellectual disabilities. Its clinical presentation is polymorphic. It can manifest as generalized seizures, partial or specific epilepsy syndromes. She puts a positive diagnosis problem and especially differential with other frequent paroxysmal phenomena in this population. The electroencephalogram is essential to confirm epilepsy, specify its type, but also to analyze brain maturation. It also sometimes has a specific aspect in certain genetic syndromes, which can target requests genetic testing. Epilepsy can be with disability result from the same cause, as it may be the cause of the impairment. The management should be holistic therapeutic, social and psychological. Respect for medical prescription and healthy lifestyle guidelines must be rigorous, under penalty of having an increase of seizures or occurrence of side effects.L’épilepsie est une maladie chronique fréquente affectant de façon préférentielle les patients ayant une déficience intellectuelle. Sa présentation clinique est polymorphe. Elle peut se manifester sous forme de crises généralisées, partielles ou des syndromes épileptiques spécifiques. Elle pose un problème de diagnostic positif et surtout différentiel avec les autres phénomènes paroxystiques fréquents dans cette population. L’électroencéphalogramme est indispensable pour confirmer l’épilepsie, préciser son type, mais également analyser la maturation cérébrale. Il a également parfois un aspect spécifique dans certains syndromes génétiques, ce qui permet de cibler les demandes d’examen génétique. L’épilepsie peut être avec la déficience la conséquence d’une même cause, comme elle peut être la cause de la déficience. La prise en charge doit être globale thérapeutique, sociale et psychologique. Le respect de la prescription médicale et des consignes d’hygiène de vie doit être rigoureux, sous peine d’avoir une recrudescence de crises ou l’apparition d’effets secondaire

Lessons learned from COVID-19 impact of pandemic on children with neurological disorders in Sfax, Tunisia

To record the experience of caregivers for neurologically impaired children during the lockdown periods. Data from 286 children's caregivers were collected through an administered questionnaire to record: access to care services during the lockdown periods, causes underlying loss of access to care, mitigations adopted by caregivers and patients’ outcomes. The mean age of children was 8.11 years-old and sex ratio (F/M) was 0.66. They were mainly followed-up for epilepsy or epileptic encephalopathy (53%) and cerebral palsy (21%). During the lockdown periods, caregivers reported that 45% of children had no access to healthcare majorly for neurorehabilitation (76.7%) and medicines (70.7%). Most caregivers (36%) related limitations in access to fear from catching the virus. The majority resorted to continuation of the same treatment via primary healthcare facilities (41%) and postponement of their appointments (24%). Our results show that access to healthcare for children with neurological disorders was deeply disrupted during the COVID-19 pandemic. The already precarious health systems’ infrastructures might have been the main causes for this and should be thus considered in the health policy and planing

Position Statement:Emerging genetic therapies for rare disorders

Emerging genetic therapies for rare disorders at high cost, cannot realistically address the global burden of disease. Stakeholders must develop new pathways to ensure safe, fair and sustainable provision of such therapies

The ILAE classification of seizures and the epilepsies : Modification for seizures in the neonate. Position paper by the ILAE Task Force on Neonatal Seizures

Seizures are the most common neurological emergency in the neonatal period and in contrast to those in infancy and childhood, are often provoked seizures with an acute cause and may be electrographic-only. Hence, neonatal seizures may not fit easily into classification schemes for seizures and epilepsies primarily developed for older children and adults. A Neonatal Seizures Task Force was established by the International League Against Epilepsy (ILAE) to develop a modification of the 2017 ILAE Classification of Seizures and Epilepsies, relevant to neonates. The neonatal classification framework emphasizes the role of electroencephalography (EEG) in the diagnosis of seizures in the neonate and includes a classification of seizure types relevant to this age group. The seizure type is determined by the predominant clinical feature. Many neonatal seizures are electrographic-only with no evident clinical features; therefore, these are included in the proposed classification. Clinical events without an EEG correlate are not included. Because seizures in the neonatal period have been shown to have a focal onset, a division into focal and generalized is unnecessary. Seizures can have a motor (automatisms, clonic, epileptic spasms, myoclonic, tonic), non-motor (autonomic, behavior arrest), or sequential presentation. The classification allows the user to choose the level of detail when classifying seizures in this age group.Peer reviewe

Transitional Care for Young People with Movement Disorders: Consensus-Based Recommendations from the MDS Task Force on Pediatrics

Background: The International Parkinson and Movement Disorders Society (MDS) set up a working group on pediatric movement disorders (MDS Task Force on Pediatrics) to generate recommendations to guide the transition process from pediatrics to adult health care systems in patients with childhood-onset movement disorders. / Methods: To develop recommendations for transitional care for childhood onset movement disorders, we used a formal consensus development process, using a multi-round, web-based Delphi survey. The Delphi survey was based on the results of the scoping review of the literature and the results of a survey of MDS members on transition practices. Through iterative discussions, we generated the recommendations included in the survey. The MDS Task Force on Pediatrics were the voting members for the Delphi survey. The task force members comprise 23 child and adult neurologists with expertise in the field of movement disorders and from all regions of the world. / Results: Fifteen recommendations divided across four different areas were made pertaining to: (1) team composition and structure, (2) planning and readiness, (3) goals of care, and (4) administration and research. All recommendations achieved consensus with a median score of 7 or greater. / Conclusion: Recommendations on providing transitional care for patients with childhood onset movement disorders are provided. Nevertheless several challenges remain in the implementation of these recommendations, related to health infrastructure and the distribution of health resources, and the availability of knowledgeable and interested practitioners. Research on the influence of transitional care programs on outcomes in childhood onset movement disorders is much needed

Treatment of seizures in the neonate: Guidelines and consensus-based recommendations—Special report from the ILAE Task Force on Neonatal Seizures

Seizures are common in neonates, but there is substantial management variability. The Neonatal Task Force of the International League Against Epilepsy (ILAE) developed evidence-based recommendations about antiseizure medication (ASM) management in neonates in accordance with ILAE standards. Six priority questions were formulated, a systematic literature review and meta-analysis were performed, and results were reported following the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) 2020 standards. Bias was evaluated using the Cochrane tool and risk of Bias in non-randomised studies - of interventions (ROBINS-I), and quality of evidence was evaluated using grading of recommendations, assessment, development and evaluation (GRADE). If insufficient evidence was available, then expert opinion was sought using Delphi consensus methodology. The strength of recommendations was defined according to the ILAE Clinical Practice Guidelines development tool. There were six main recommendations. First, phenobarbital should be the first-line ASM (evidence-based recommendation) regardless of etiology (expert agreement), unless channelopathy is likely the cause for seizures (e.g., due to family history), in which case phenytoin or carbamazepine should be used. Second, among neonates with seizures not responding to first-line ASM, phenytoin, levetiracetam, midazolam, or lidocaine may be used as a second-line ASM (expert agreement). In neonates with cardiac disorders, levetiracetam may be the preferred second-line ASM (expert agreement). Third, following cessation of acute provoked seizures without evidence for neonatal-onset epilepsy, ASMs should be discontinued before discharge home, regardless of magnetic resonance imaging or electroencephalographic findings (expert agreement). Fourth, therapeutic hypothermia may reduce seizure burden in neonates with hypoxic–ischemic encephalopathy (evidence-based recommendation). Fifth, treating neonatal seizures (including electrographic-only seizures) to achieve a lower seizure burden may be associated with improved outcome (expert agreement). Sixth, a trial of pyridoxine may be attempted in neonates presenting with clinical features of vitamin B6-dependent epilepsy and seizures unresponsive to second-line ASM (expert agreement). Additional considerations include a standardized pathway for the management of neonatal seizures in each neonatal unit and informing parents/guardians about the diagnosis of seizures and initial treatment options

Treatment of seizures in the neonate: Guidelines and consensus-based recommendations-Special report from the ILAE Task Force on Neonatal Seizures

Seizures are common in neonates, but there is substantial management variability. The Neonatal Task Force of the International League Against Epilepsy (ILAE) developed evidence-based recommendations about antiseizure medication (ASM) management in neonates in accordance with ILAE standards. Six priority questions were formulated, a systematic literature review and meta-analysis were performed, and results were reported following the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) 2020 standards. Bias was evaluated using the Cochrane tool and risk of Bias in non-randomised studies - of interventions (ROBINS-I), and quality of evidence was evaluated using grading of recommendations, assessment, development and evaluation (GRADE). If insufficient evidence was available, then expert opinion was sought using Delphi consensus methodology. The strength of recommendations was defined according to the ILAE Clinical Practice Guidelines development tool. There were six main recommendations. First, phenobarbital should be the first-line ASM (evidence-based recommendation) regardless of etiology (expert agreement), unless channelopathy is likely the cause for seizures (e.g., due to family history), in which case phenytoin or carbamazepine should be used. Second, among neonates with seizures not responding to first-line ASM, phenytoin, levetiracetam, midazolam, or lidocaine may be used as a second-line ASM (expert agreement). In neonates with cardiac disorders, levetiracetam may be the preferred second-line ASM (expert agreement). Third, following cessation of acute provoked seizures without evidence for neonatal-onset epilepsy, ASMs should be discontinued before discharge home, regardless of magnetic resonance imaging or electroencephalographic findings (expert agreement). Fourth, therapeutic hypothermia may reduce seizure burden in neonates with hypoxic-ischemic encephalopathy (evidence-based recommendation). Fifth, treating neonatal seizures (including electrographic-only seizures) to achieve a lower seizure burden may be associated with improved outcome (expert agreement). Sixth, a trial of pyridoxine may be attempted in neonates presenting with clinical features of vitamin B6-dependent epilepsy and seizures unresponsive to second-line ASM (expert agreement). Additional considerations include a standardized pathway for the management of neonatal seizures in each neonatal unit and informing parents/guardians about the diagnosis of seizures and initial treatment options

Etat de mal épileptique tonique induit par Leviteracetam: à propos d’un cas

Résumé :Le Leviteracetam (LEV) est un antiépileptique indiqué dans les crises focales ou les crises généralisées. Il est récemment décrit une augmentation de la fréquence des crises épileptiques ou même une induction de crises épileptiques voir d’un état de mal épileptique.Nous rapportons le cas d’une jeune fille de 18 ans suivie pour déficience intellectuelle avec épilepsie focale évoluant depuis l’âge de 6 ans pharmaco-résistante malgré plusieurs associations d’antiépileptiques, qui a développé un état de mal tonique suite à l’introduction de LEV.Notre cas est le premier qui rapporte un état de mal tonique confirmé par un EEG vidéo critique secondaire à l’introduction de LEV.L’effet paradoxal des médicaments antiépileptiques (MAE) est connu de longue date surtout avec les anciens MAE en particulier la carbamazépine. Avec le LEV, cet effet a été noté dans 43% chez l’enfant et 18% chez l’adulte