Epilepsy day: A note to parents, teachers

Every second Monday of February is International Day of Epilepsy. This day is to promote awareness and join hands to highlight the problems faced by people with epilepsy, their families and for their carers to better support them. This year, the day falls on Valentine’s Day and so, we have an opportunity to show love to children with epilepsy.

Approximately 1% of the population in a community has epilepsy. In some parts of northern Uganda, this figure is about 2%. This means, for Uganda’s population of 45 million people, we may have 450,000 – 900,000 living with epilepsy. A school with 500 pupils may have five children with epilepsy. However, many affected children are denied school mostly due to stigma, negative beliefs and a poor understanding of epilepsy. Most times, the few in school are sent back and instructed to return after they are cured. This very unfortunate practice denies education for children with epilepsy and prevents them from gaining skills for future livelihood. It condemns them to lifetime poverty. Today, I share some information on childhood epilepsy which parents and teachers may particularly find useful.  

Epilepsy is the most common chronic brain disorder in the world. Worldwide, about 50 million people live with epilepsy. Eighty percent of these are in resource limited countries like Uganda. Affected individuals have a propensity to have repeated fits, seizures or convulsions mostly due to a defect in the control of electrical discharges in the brain. This propensity for recurrent seizures maybe inherited, be a consequence of abnormal brain development or acquired later in life. Important causes in Uganda include brain injury in new born babies such as during difficult labour, brain injury from infections such as cerebral malaria and meningitis, and head injury in road traffic accidents. Others are genetic disorders and an abnormal development of the brain. In some cases however, the cause of epilepsy is unknown. Parasite infections of the brain by the larvae of the pork tapeworm – if one eats infected undercooked pork and stroke from High Blood Pressure are other preventable causes.

Attendance of antenatal care by pregnant mothers provides an opportunity to detect complications that would put babies at risk. This coupled with skilled delivery will prevent a big proportion of newborn brain injury related epilepsy. Completion of scheduled infant vaccinations will prevent bacterial and viral infections that cause meningitis and encephalitis, prevention of malaria with treated mosquito nets, eating adequately cooked food, use of helmets while riding on boda bodas and discipline while driving on our roads will all help. The first lesson from this is that one cannot “contract” epilepsy through contact with a person with epilepsy or when the saliva of a person with epilepsy drops on you.

Secondly, seizures in epilepsy may manifest with generalized body shaking, frothing, tongue biting and incontinence of urine and stool. The patient becomes unconscious and after the seizure, may sleep for some time before waking. These are called generalized seizures. Some children may have shaking of only a part of the body. The child may remain alert or have a clouding of consciousness. Some others may experience abnormal sensations in a part of the body. These are focal seizures. Unlike generalized seizures, focal seizures are thought to arise from and only spread to a part of the brain. Others have repeated brief 20 – 60 second episodes of blank stares. These absence seizures can occur hundreds of times in a day and can seriously impair a child’s learning. Unfortunately, a teacher may report the child as one who does not concentrate in class or being easily distracted. Even, some are punished. Others have jerks, abnormal sensations, or abnormal behavior.

Third, epilepsy is treatable and curable. Of 100 children with new onset epilepsy, over 70% of patients can have their seizures effectively controlled with current treatments. Anti epileptic medications are available across the country although the types and range may vary with the level of the health unit. These medicines should be taken consistently and daily whether or not the patient has seizures and treatment is for several months or years. Since children grow, the dose is adjusted with growth. Only when a health worker feels epilepsy has been cured can they wean off the medicines and this is done slowly over several weeks or months and at a minimum after 2 years without an attack. Epilepsy in the remaining 20-30% may be controlled with continuous treatment; some may require other treatment modalities including surgery and some especially that in children with complex epilepsy are life-long. 

Unfortunately, despite their availability, up to 60% of people with epilepsy do not take these medicines. Thus, convulsions remain uncontrolled and patients suffer repeated seizures, severe burns when they fall in fires or drown in water bodies. Children with epilepsy are hidden for fear of the family being ostracized. Common beliefs that epilepsy is associated with ancestral spirits, traditional rituals, witchcraft or punishment for the sins of the family are major obstacles to seeking healthcare as it perpetuates stigma. Moreover, these problems are compounded by unfounded rumors such as if one touches a convulsing patient or makes contact with saliva drooling from such a patient; he or she will also contract epilepsy! 

Although the sight of a child having a generalized fit may be scary, only a few basic actions are required to handle them. Parents should inform the class teacher if their child has epilepsy. Most seizures last 1 – 3 minutes and stop on their own. Seizures lasting longer than 5 minutes need immediate attention and treatment to terminate them. Similarly, a child having short repeated seizures needs immediate treatment. The school nurse should be called urgently and the child transferred to a health unit. 

Dos:

• Put the child to lie down in a safe place preferably on the side and during recovery, extend the neck backwards slightly so that breathing is not obstructed. 
• Remove sharp objects, desks away from the child and relieve any tight fitting cloth and ties.
• If the seizure lasts longer than 3 minutes, call for help. 

Don’ts

Do not put a spoon, stick or your finger in the mouth. Even if the child were to bite the tongue, this can be sutured later. You may lose the finger, push the tongue backwards and block the airway or dislodge a tooth, which may be aspirated into the airway and cause an even more difficult emergency.     

Dr Richard Idiro senior lecturer at Makerere and Paediatric Neurologist, Mulago hospital