By Dr Richard Idro
In Mulago hospital, we have a specialist clinic every Thursday for children with different brain disorders. Convulsions are the most common reason parents seek attention in this clinic with epilepsy being the leading diagnosis we make.
In the general community, about 0.5% of the population may have epilepsy. A school of 500 pupils may have 2-5 children with epilepsy. However, the majority of affected school-age children are denied school mostly due to stigma, negative beliefs and a poor understanding of epilepsy, its causes, symptoms and signs.
Even those in school are often sent back home, if they experience convulsions in a classroom or in the school compound and instructed to only return to school after these seizures have been controlled or cured. This very unfortunate practice denies education for children with epilepsy and prevents them from gaining skills for their future livelihood. Instead, it condemns them to a life of potential lifetime poverty.
Epilepsy is the most common chronic brain disorder in the world. Worldwide, an estimated 80 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 fits may be inherited, a consequence of abnormal brain development or is acquired later in life. The causes of epilepsy, therefore, include inherited or genetic factors, abnormal brain development or chemical composition in the body, birth injury, and infections of the brain, trauma to the head and brain tumors. The first lesson from this is that one cannot “contract” epilepsy through contact with a person with epilepsy or when he or she makes contact with the saliva drooling or frothing during a fit.
Secondly, seizures in epilepsy may manifest with generalised 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 generalised seizures.
A second group of children may have shaking or jerking of only parts of the body. The child may remain alert or only have a clouding of consciousness. Some others may experience abnormal sensations in a part of the body. These are focal seizures. Unlike generalised seizures, focal seizures are thought to arise from and only spread to a part of the brain. Some children 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. Some even get punished.
Third, epilepsy is treatable and curable. Out of 100 children with new onset epilepsy, over 70% of patients can have their seizures effectively controlled. 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. Epilepsy the remaining 20-30% may only be controlled with continuous treatment; others may require other treatments including surgery and some especially that in children with complex epilepsy are life-long.
Although the sight of a child having a generalised fit may be scary, only a few basic actions are required to handle a child having a seizure in the school. 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 five 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.
· 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 any nearby sharp objects, desks away from the child and relieve any tight fitting cloths and ties.
· If the seizure lasts longer than three minutes, call for help.
· 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.
Fourth, as the class teacher, encourage children with epilepsy to take their antiepileptic medication as prescribed and if this is on a thrice daily schedule, check that the lunch time dose is taken. Talk about epilepsy in the class with other children and encourage them not to fear to play with the affected child. In case of a seizure, they should quickly call for help. Children with epilepsy can engage in all activities as other children.
Do not put unnecessary restrictions on them. However, they should only swim in the presence of an adult and should not be left alone especially near water bodies or fire. Heights may also be avoided. On days when the children have had seizures overnight or early in the morning, they may be sleepy or come to school late. This should be taken into consideration when giving them tasks. Some anti epilepsy medicines may also make them sleepy.
Fifth, children with epilepsy may experience concurrent difficulties in other body functional areas including in attention, learning, movement and behaviour. These disabilities may present the class teacher with additional difficulties in managing the child in class. Help is available in health centres to address some of these difficulties. The children may also miss school as they attend health check-ups; clinic reviews and therapy for these difficulties thus making them require additional help to catch up with other children.
Let us all support children with epilepsy to attend school and get trained.
The writer is a Consultant Paediatrician and Paediatric Neurologist, Mulago hospital