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Addressing The Restrictions and Mortality In The Lives of Children With Epilepsy.

Can we prevent SUDEP
Rajesh Ramachandran Nair

The first step in preventing mortality secondary to SUDEP is understanding and identifying the factors that place individuals with epilepsy at risk of sudden death and providing appropriate counseling regarding their SUDEP risk. Several checklists and SUDEP scores from case-control studies have been developed to help identify SUDEP risk. A challenge of such inventories is that they are not validated to stratify individual risk of SUDEP, and patients and families want to be informed about their risk. Disclosure of SUDEP risk has been associated with improvement in epilepsy-related childcare behavior and practices such as administering ASMs at fixed times, using rescue medications, and having a seizure action plan. However, it remains uncertain how much individual behavioral modification may reduce the risk of SUDEP over time. Referral for epilepsy surgery should be considered early in those with medically refractory epilepsy, as it can help improve seizure control and decrease mortality and SUDEP risk. Nocturnal supervision may be protective when a caregiver is alerted early that a seizure has occurred and can provide appropriate resuscitation. However, this may be challenging for some families and impact the quality of life. There will be a discussion on the use of seizure-detection devices. Future preventive strategies include drugs that use the adenosine and serotoninergic mechanisms
 

Mortality in CWE: Analyzing the prevalence and risk factors
Johann Sebastián Ortiz De la Rosa

This talk will primarily focus on non-SUDEP mortality in CWE and use real cases for illustration. CWE are at higher risk of mortality than the general population. Potential reasons for mortality in CWE include: 

1. Accidents related to seizures: accidents such as drowning, falls, or burns, which can be fatal.

2. Status epilepticus: Status epilepticus can be life-threatening if not treated promptly.

3. Underlying medical conditions: Children with epilepsy may have an underlying medical condition contributing to their mortality risk. For example, some children with epilepsy may have congenital heart disease or cerebral palsy affecting their overall health and well-being.

4. Side effects of medication: Some medications used to treat epilepsy may have side effects that can be harmful or even fatal in rare cases. For example, some children may develop liver or kidney damage from long-term use of certain antiepileptic drugs.

5.  SUDEP is a significant cause of epilepsy-related mortality in children and young adults. 

With appropriate treatment and management of seizures, many CWEs can live long and healthy lives. However, it is crucial to be aware of the potential risks and to take steps to prevent unnecessary deaths in this vulnerable population. This may involve regular monitoring, appropriate medication management, and careful attention to safety measures to prevent accidents during seizures.

 

Restrictions in the lives of Children with Epilepsy: Finding the right balance
Jithangi Wanigasinghe

While epilepsy can be managed effectively, it may require some restrictions on the lives of CWE. Finding the right balance between protecting CWE & allowing them to have active lives can be challenging. It is important to ensure that CWEs are safe and protected from harm. This may involve restricting activities like swimming alone, playing contact sports, or climbing trees. CWEs are children, first and foremost, with the same rights and opportunities as their peers. Overly restrictive measures can lead to social isolation, decreased self-esteem, and impaired development. Encouraging physical activity, socialization, and educational opportunities can help children with epilepsy to thrive and reach their full potential.

One way to find the right balance is to involve the child and their family in decision-making and planning. This may involve developing an individualized care plan considering the child's unique needs and preferences. It may also involve working with healthcare professionals, educators, and other support services to ensure the child has the necessary accommodations and resources to participate fully in school and social activities.
Another approach is to focus on preventative measures that reduce the risk of seizures and accidents. It may also involve teaching the child and their family members how to recognize the signs of a seizure and respond appropriately.
The speaker will present a proposed guideline on reasonable restrictions in CWE.

 

Mechanism of SUDEP; Results from recent clinical and basic sciences research
Helen Cross

Though considerable progress has been made in the understanding of SUDEP etiology and pathogenesis of SUDEP are not fully understood. The presence and frequency of GTCs is the most important risk factor for SUDEP. Previously reported risk factors such as young age of epilepsy onset, longer duration of epilepsy, intellectual disability, and structural etiologies were found not to be associated with SUDEP after adjustment for GTC frequency. Infants who were small for gestational age and those with an Apgar score of 0-6 compared to 9-10 at 10 minutes had a three-fold increase in SUDEP risk. Genetic factors may be found in approximately 30-50% of patients who die of SUDEP on post-mortem testing. Both epilepsy-related genes and cardiac genes may be implicated in SUDEP deaths. Although not fully understood, underlying genetic risk factors may increase SUDEP risk through different mechanisms, such as autonomic dysfunction (i.e., reduced heart rate variability) and/or cardiorespiratory dysfunction (i.e., the gene may cause concomitant arrhythmia).
This interactive talk will discuss the recent advances in uncovering mechanisms of SUDEP based on basic science and clinical research, especially neurotransmitters (e.g., adenosine, serotonin, etc.), respiratory function (e.g., ictal apnea/hypoxemia including central mechanisms and diaphragmatic paralysis), and autonomic dysfunction and cardiac changes in patients with epilepsy.