Raising an epileptic child

Monday December 14 2015

Proscovia Nabayinda carries her nine-year-old

Proscovia Nabayinda carries her nine-year-old son Jjuuko Batesita who is unable to walk due to complications related to epilepsy. Photo by Brian Mugenyi.  

By Brian Mugenyi

Jjuuko Batesita, 9, looks pale, is weak and unable to walk due to abnormalities brought on by illness. According to his parents Proscovia Nabayinda and Julius Sserwadda, the boy seemed normal in his early years.
On carrying him, one discovers that he has no muscle tone particularly in his arms and legs, which forces him to fall.
From his wheelchair, one can see that his skin is covered with rashes.

His mother says when she gave birth to him in 2007 at Kyannamukaaka Health Centre III, she didn’t notice any problem. She says the baby began to lose appetite for both food and drinks at one and half years of age.
The couple, who are residents from Kibutamu-Kabira in Rakai District, went in search of something to stimulate their son’s appetite.
“Doctors recommended that we buy soya and also juicy fruits which we tried for several months,” Nabayinda recalls.

By the time Jjuuko was expected to start walking, he made no efforts to move. This prompted the couple to visit Kyannamukaaka Health Centre III to find out what had gone wrong with their son.
They were, however, referred to Mulago National Referral Hospital where doctors discovered that Jjuuko was suffering from epilepsy brain disorder. It was then recommended that he undergoes surgery.

“My son was weak and also had difficulty in breathing,” Nabayinda adds.
Since the family could not afford the Shs1m which was required to carry out an operation, they continued giving Jjuuko some tablets such as carbamazepine and folic acid which, they say, give him some relief.
Three years since Jjuuko left Mulago Hospital, he has been seeking treatment at Kyannamukaaka Health Centre.
“The daily expenses in Mulago were too high and the doctors told me that if he is to be operated , it would require over Shs1m which we could not afford as a family,” Nabayinda adds as her eyes brims with tears.

Every week, the family gets treatment worth Shs72,000 at Kyannamukaaka Health Centre a long with other requirements such as a bottle of honey. Jjuuko’s mother adds that he also suffers diarrhoea and frequent colds.
According to Dr Owor Bosco, who handles Jjuuko at Kyannamukaaka Health Centre III, the latter needs intensive care and treatment.

“Jjuuko is seriously sick. He needs intensive care and treatment. We are trying our best, but medication for his congenital abnormalities are expensive,” Dr Owor says, adding that the boy also faces a challenge of muscle stiffness and rigidity which makes him unable to walk.
Dr Owor encourages Nabayinda and her husband to feed the patient with adequate greens and fruits so that hehe can enough energy.
“I also advised them to give him porridge (soya) accompanied with one spoon of margarine everyday,” he adds.


According to Fr Paul Lumala, a Clinical Science and Counselling expert, all types of diseases can be treated. “Parents should be conscious of their children who suffer from these illnesses and search for treatment when it is still early. Epilepsy damages the central nervous system,” Lumala explains .
A patient with epilepsy is advised to do enough physical exercise and also eat foods rich in iron and calcium which strengths the bones and teeth. Lumala dismisses claims that epilepsy is a result of witchcraft .

“This disease is real and it can be treated in Butabika and even Mulago Hospital. People who take it for granted and call it witchcraft are simply ignorant,” he says.
He advises parents and other caretakers of children suffering from epilepsy to always shield them from getting in touch with fire, ductile and other glassware materials which may be harmful to both the victim and others .

Epilepsy explained
Epilepsy, according to medical experts is a group of related disorders characterised by a tendency for recurrent seizures. A seizure occurs when a burst of electrical impulses in the brain escape their normal limits. These spread to neighbouring areas and create an uncontrolled storm of electrical activity. There are different types of epilepsy and seizures.
Epilepsy drugs are prescribed to control seizures, and surgery may be necessary if medications are ineffective.
When identifiable, the cause of epilepsy usually involves some form of injury to the brain. For most people, though, the cause of epilepsy is not known.

According to the Epilepsy Foundation based in the US, there are about 180,000 new cases of epilepsy each year across the world. 30 per cent of these occur in children. Children and elderly adults are the ones most often affected. In Uganda, there are 156 documented new cases of epilepsy per 100,000 citizens every year, but the number is estimated to be far higher.

How epilepsy is treated
The majority of epileptic seizures are controlled by medication, particularly anticonvulsant drugs.
The type of treatment prescribed will depend on several factors, including the frequency and severity of the seizures and the person’s age, overall health, and medical history.
An accurate diagnosis of the type of epilepsy is also critical to choosing the best treatment. Medications used to treat epilepsy include; carbamazepine, diazepam and phenytoin phenobarbital.

The choice of drug is often based on factors such as the patient’s tolerance of side effects, other illnesses he or she might have, and the medication’s delivery method.
Although the different types of epilepsy vary greatly, in general, medication can control seizures in about 70 per cent of cases.
However, these drugs have also side effects to the patient. The occurrence of side effects depends on the dose, type of medication, and length of treatment. The side effects are usually more common with higher doses, but tend to be less severe with time as the body adjusts to the medication.

Anti-epileptic drugs are usually started at lower doses and increased gradually to make this adjustment easier. One of the best rules in medicine is to ‘’go low and go slow.’’
Side effects may include; double vision, fatigue, sleepiness, stomachache, skin rashes, low blood counts, liver problems and at times hair loss.

First aid for a patient
Different types of seizures may require different responses. It is applicable that an epileptic patient should always carry medical identification, in case of an emergency. Knowledge of his or her seizure disorder can help people around to provide appropriate medication.

Also relatives should reassure the child and check to see if he or she got hurt from the fall. If the seizure is a first occurrence, a medical check-up is recommended.
Parents are also advised to move child away from hard, sharp, or hot objects. Put something soft under child’s head.
Turn child on one side to keep air route clear. Do not put anything in child’s mouth or give liquids or medicines during or immediately after the seizure.