How to care for children with nodding syndrome

Oct 12, 2021

In Uganda, this syndrome is seen in 0.7% of children aged 5-18, but in certain districts, the prevalence is as high as 4.6%.

Pupils playing football at Lapuda primary school in Gulu district. Photos by Ritah Mukas

Ritah Mukasa
Journalist @New Vision

Early 2016, Jenifer Alaroker was transferred to Lapuda primary school located in Paicho Sub County in Gulu district.

There she found several pupils battling nodding disease syndrome. 

Alaroker says the children would get seizures frequently, but they improved with drugs and supplements. 

“It would get worse when hungry,” she notes.

When they get seizures, they become wild and start falling; one after the other. The class gets distracted. 

Alaroker highlights that fellow teachers come in to help remove furniture and create space for them to roll and fold.

Jenifer Alaroker

Jenifer Alaroker

After, they hold them so that they don’t injure themselves. It takes hours for them to normalize.

Elsewhere, when the pupils are out playing, the teachers and prefects keep an eye on them. 

They protect them from hazards such as rocks, water, and fire.

Usually, when the children get seizures, they wander off since they are not in their right state of mind. They need care all the time.

According to Alaroker, these children are always sad, weak, and withdrawn.

“Those who get drugs, nutrition supplements and rehabilitation services improve greatly,” she elaborates.

“They grow up well, put on weight and their cognitive functions improve,” she emphasizes.

Before COVID-19, Alaroker says, the school used to prepare meals for pupils, but they would ensure the food is prepared and served far away from the children. 

From 2016-2019, Alaroker reports that the school lost more than five pupils. These died of accidents from their homes. 

Meanwhile, at school, teachers quickly notice the signs such as the pupil becoming wild. They calm them. 

They also caution other pupils against being rude to them. They also discourage them from playing rough games.

“In class, we cater for individual needs because they are usually slow learners,” Alaroker explains.  

She adds that if they mistreat them, some lose interest and drop out of school.

If they come late or miss school, the teachers talk to their parents to find out why.

“We have many cases here, but the boys outnumber the girls,” she says. 

About the disease

Nodding syndrome hit Northern Uganda in 2007.

According to a study, the Prevalence and incidence of nodding syndrome and other forms of epilepsy in onchocerciasis-endemic areas in northern Uganda by the National Library of Medicine, nobody knows where the disease came from.

But it devastated many children in Kitgum, Gulu, Pader, Moyo and Omoro among others.

It causes severe developmental delays and psychiatric disturbances. Many died from seizures that result in burns, falls, or drownings.

Also, the outbreak left behind more than 2,100 children with lifelong disabilities. 

In Uganda, this syndrome is seen in 0.7% of children aged 5-18, but in certain districts, the prevalence is as high as 4.6%.

 

 

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