The story of Eric, a nine year old boy with several short episodes of blank stare in a day displays an example of Childhood Absence Epilepsy. His mother apparently had similar episodes in childhood. She knows too well what it means to have such episodes. Eric has childhood absence epilepsy, an epilepsy type presenting with short episodes (lasting less than ten seconds) of loss of awareness. If a person is speaking when a seizure begins, they will stop talking, often in the middle of a sentence. It may seem like a pause to an observer. Often a child may have many absence seizures in a row and the child may just look confused and not know what has happened.

Eric’s mother suffered this type of epilepsy during her childhood and early teenage. Her memory seems too fresh on what she went through. She narrated her story with bitterness and regrets. She was always punished in school and home because of what teachers and parents thought was daydreaming. It was difficult for her play with her peers. This was the most difficult time of her life, “nobody understood me and I always lived in fear…... but I don’t know how this problem disappeared, I just found myself not having it, I don’t want my son suffer like me.” She narrated. In about 7 out of 10 children with absence seizures, the seizures may go away by age 18. Wrong drug treatment for this epilepsy type can be disastrous.

It is therefore medically incorrect to label a child with childhood absence epilepsy (like Eric and his mother) and other type of epilepsy like temporal-lobe epilepsy (TLE) as simply having ‘epilepsy’ just because they both have seizures. These two types of epilepsy will respond to different drug treatment (with some of TLE treatable with surgical intervention) and have different outcome.

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#EpilepsyAwareness: Parenting a teenage girl with epilepsy

Diagnosis

The classification of epilepsies (medical diagnosis) is not without pitfalls: syndromes overlap, syndromes may evolve from one to another, syndrome definitions are inadequate, terminology is difficult or inappropriate and the classification is complex. This should be taken as a challenge in favor of a proper medical diagnosis, not as an excuse against making one. Accurate medical diagnosis does more than improving patient management and well-being; it also allows proper advice on prognosis, genetic risk, and employment.

Treatment and Research

Most of the epilepsy clinics in Kenya are run by epilepsy organizations and private practitioners. Most of these clinics, if not all do not offer holistic care and lack basic test like an Electroencephalograph (EEG) which is the first step but not the only step in making the medical diagnosis of epilepsy, (It is worth noting that even a normal EEG in those with epileptic seizures is a very vital information). None have residential facilities where refractory epilepsies (difficult to treat) can be investigated and treated before patients discharged home and parents and carers have a good understanding of the condition. Our government facilities have psychiatry clinic where patients with epilepsy are also seen.

Epilepsy research in Kenya has given the rest of the world good insights on the prevalence, incidence, risk factors for causation of epilepsy, reasons for high treatment gap and morbidity and mortality of epilepsy. One of the top priority recommendations is making effective antiepileptic drugs available in our government health facilities and training of health care providers. These recommendations have been made because the burden of epilepsy has largely been contributed by lack of knowledge or knowledge misdirection on part of health care providers.

Without doubt, when the diagnosis and management of epilepsy is compromised by lack of appropriate knowledge in the ‘trusted knowledgeable’ individual in the person of a doctor; and when things don’t go right – and they often do not, the damage to the credibility of the modern drug based treatment is enormous.

Implementation of these top priority recommendations that is, training of health care workers, skills transfer and capacity building should not be delayed any longer.