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Nodding Syndrome: A Devastating Medical Mystery In Uganda

It starts with the nodding — otherwise normal children begin to nod their heads, pathologically. Then come the seizures. The children stop growing and stop talking. Ultimately, the disease wrecks the children, physically and mentally.

The strange and deadly illness known as nodding syndrome affects only children, and only in a small pocket of East Africa. It has affected more than 3,000 children since the late 1990s, when it first appeared in what was then southern Sudan. And for more than three years, the cause of nodding syndrome has eluded epidemiologists around the globe.

Investigators at the Centers for Disease Control in Prevention in Atlanta have made the syndrome among their top priorities on the short list of new, unexplained outbreaks.

But as they, and others, continue to investigate the syndrome — figuring out its origin and how it spreads — much of the work trying to treat affected children has been left to Uganda.

Seeking A Return To Normalcy

The nodding syndrome ward in the northern district of Pader, in Uganda, is a bleak place. Even a nurse here, Nicole Nyeko, will admit as much.

"Because it's not really a ward," Nyeko says. "It's just somewhere where they have dumped these children."

One of five that the Ministry of Health opened last summer in northern Uganda, the ward in Pader is a squat, one-story cement building. It's not spacious. It couldn't handle much more than the 11 mattresses, which sit directly on the ground, that run the length of the walls. Lamona Santiana sits on one of these mattresses. She came here a week ago with her grandson, Denis.

Santiana says that for Denis, as with most children affected, it began with the pathological nodding of the head nearly a decade ago.

He's 16 now, she says, but you can only get a glimpse of his age in his face – he looks half the size you'd expect him to be. He rarely moves. He hardly speaks. If he wants water, she says, he'll take a cup nearby and tap the cement floor with it. Most everything else is nonsense, hallucinations.

"He's just in his own world," Nyeko says.

This happens with children with nodding syndrome: They fall apart cognitively.

And so what Nyeko and others hired by the Ministry of Health are trying to do is bring children like Denis back to some sort of normalcy, which is difficult to do here.

Health care in Uganda isn't good. Less than one-third of the major health centers in the country are fully operational. Still, the Ugandan Ministry of Health carved out $1.4 million in its budget last year to mount a response to nodding syndrome.

Medicine Treats The Symptoms

The ministry hired and trained physicians and nurses, like Nyeko. It bought big white vans, emblazoned with "Nodding Syndrome Response Team" in blue lettering. It also bought more than a million tablets of a generic anti-convulsant called sodium valproate, a drug that came on recommendation from the Centers for Disease Control and Prevention and the World Health Organization.

The idea is that if you can begin to control the nodding — in other words, the seizure — then maybe you can start to return a child to normal.

Workers get the drug to nearly all of the 3,000 affected Ugandan children by covering thousands of square miles of dirt roads. As of now, there aren't numbers, or at least nothing peer reviewed, to back up how well the drug is working, so instead you get anecdotes like Geoffrey Tabo.

In a small village in Pader, Geoffrey sits cross-legged next to his father in a patch of grass, away from the crowd of parents and children who were still awaiting treatment. He says he doesn't remember much from when he was sick.

His father fills in the blanks, describing how the nodding began three years ago. Over that time, he watched his son withdraw from friends and eventually stop talking all together.

But, after six months on sodium valproate, Geoffrey can hold a conversation. He has returned to school. He's in the third grade and says he likes it.

There are other stories like Geoffrey's.

"Some of the worst affected ones couldn't feed themselves and now they're feeding themselves," says Robert Downing, a microbiologist at the CDC's campus in Entebbe, Uganda. "One of the ones I saw couldn't walk and now is walking."

The CDC in Atlanta has spent hundreds of thousands of dollars and countless hours assisting the Ugandan government in investigating nodding syndrome. Among the possibilities explored is whether nodding syndrome could be caused by war-related chemical exposure, a response to a local parasite, or a vitamin deficiency or genetics. So far, investigators have hit dead ends.

So, short of a cause, they're trying to treat a symptom. Sodium valproate has proved effective in treating seizures similar to nodding syndrome, which is why the CDC and the World Health Organization recommended the drug to the Ugandan government as a potential treatment.

Parents Do The Best They Can

But Downing says that any anti-convulsant treatment is only one aspect of a response plan the CDC helped draft with the Ugandan government last year. There were also plans for re-education, nutrition, rehabilitation and more. But those programs were reliant on outside donors and have either withered up, gone unfunded or unimplemented. And nongovernmental organizations that champion nodding syndrome as a cause are few and far between, leaving families with children who might not nod as much, but are nowhere near normal.

"So they do need help," Downing says. "And ..."

He lets out a heavy sigh.

"There's so little there."

The outreach team in the district of Pader makes 27 house visits every month, going to see children one by one in some villages. At one home members visited recently, the parents were gone.

Morris Oyo, lets us in. There, his brother, Robert, lies on the dirt floor, back against the clay wall, slowly eating rice from a bowl. A linked chain is wrapped around his ankle. It runs up to the roof, tied to a wooden beam.

Morris tells me his brother has been nodding for 10 years. When it got bad, his parents took to tying him up in the hut so they could continue to work the fields. Most parents fear if their child is left alone, they might wander off, drown in a nearby well or fall into a fire. Morris says his parents can't afford to do anything else.

After we walked out of the hut, a few from the response team told me they will often forcibly remove children from their homes if they think the child is neglected. I ask them if this constitutes neglect. They tell me no. This is just the reality of the situation.

Matthew Kielty is an NPR Above the Fray fellow, sponsored by the John Alexander Project, dedicated to supporting young journalists and finding untold stories.

Copyright 2021 NPR. To see more, visit https://www.npr.org.

Matthew Kielty