Some 3,995 children have sought assistance at four nodding syndrome rehabilitation centres set up by the government in 2012. The worst-affected districts, all in the country's northern region, are: Kitgum, which has recorded 2,034 cases; Pader, with 1,210 cases; Lamwo, with 347; and Gulu, which has seen 330.
"We are out of food to provide to children," Joseph Okwera, who runs the rehabilitation centre in Kitgum, told IRIN.
Short on drugs, food
Goretti Adero, whose 12-year-old son was admitted to a health centre in Lira District, said she withdrew him from the facility because there was insufficient food and an erratic drug supply.
"For me, I decided to bring my child back home where the family can feed him. At that time, there were no drugs at centre, so it was pointless to stay there," she said. "His situation remains the same. Maybe he will get better or not, I don't know, but I will struggle within my means."
Patients at the centres are treated with anti-epileptic medication and nutritional supplements, including folic acid and vitamin B complex.
"We are seeing improvements among the children undergoing rehabilitation at the centre, but the challenge remains poor coordination where we have to follow up for the drugs, yet the district [administration] should have brought them to centre," Robert Omiya, who is in charge of the rehabilitation centre in Gulu, told IRIN.
Stigma
Children who improve return to their communities, but many say they face stigma from schoolmates and adults.
"When I go to school, pupils always tell me that I am demon-possessed. My friends no longer stay with me, and some teachers fear me," 15-year-old Adoch* said. "Even at home, I feel lonely because our neighbours don't want their children to play with me."
Adoch has since dropped out of school.
Health workers say there is a need to hire trained psychosocial health personnel to follow up with children who have returned home from the centres. The government plans to train teachers in affected districts to deal with special-needs children, including those recovering from nodding syndrome, but poor funding has hampered these efforts.
"For Gulu, we need 25 teachers trained in special needs to handle the children. We are working on that, but it will depend on the budget we have," said Vincent Ocen, Gulu District's education officer.
In the meantime, the government and international partners, including the US Centres for Disease Control and Prevention, continue to search for the cause of the syndrome. Possible theories include a link between the syndrome and river blindness, as well as a possible relationship between nodding syndrome and two parasitic roundworms - mansonella streptocerca and mansonella perstans.
First detected in the 1960s in parts of Tanzania, nodding syndrome also appeared in what is now South Sudan in the 1990s. It began attracting international attention in 2011 as hundreds of cases were reported in northern Uganda.
*not her real name
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