Parents of children suffering from the mysterious nodding disease have threatened to vacate the recently established government treatment centres due to its inadequacy and shortage of food.

The parents say that although their children are responding to treatment, in so far as nodding seizures are concerned; conditions at the centres are getting worse.

Hellen Aol, a mother to two nodding stricken children who attends Atanga health centre III warned that she would be forced to return home unless the conditions at the centre improves.

“Food has run out of stock and we have to make do, we can do nothing at the moment," she said.

"There is no help the health center is giving us apart from medicine, they should release us to go home," she added.

Aol said that she is only able to bear the conditions they are being subjected to because of her suffering children.

"Medical workers are telling us to wait for some days and yet we do not have money to buy food, we have run out of ideas," she said.

Aol said that since she brought her two children for treatment, their seizures had reduced owing to the new drugs Sodium Valporate.

Ms Hellen Akot a resident of Wipolo village who is also attending the centre with her 10 years old son, Sam Ayela said that several parents had opted to stay at home due to the lack of basic necessities at these treatment centres.

"They tell you the difficulties they have in accessing food and that beans and maize flour have run dry from stores, even worsen is their attitude," she said.

Meanwhile several parents in villages across the region continue to tie or lock up their children in order to prevent them from endangering themselves or escaping from homes.

Those that are willing to seek medical services say that they do not have the means to get to Atanga health center.

Ajuleta Acen, a 47-year-old mother of four, lost her first-born to the nodding disease syndrome in November. Two of her three surviving children are also battling the mysterious disease.

A resident of Pabit Village in Burlobo Parish in Angagura sub-county, Pader District, Acen, says that she is willing to take her children to the government treatment centres but she is hindered by transport problem and the poor state of roads.

"One of them is blind due to nodding and cannot walk, his brother is paralysed and to transport them to the treatment center is impossible because we lack money and the roads would certainly kill them," she said.

Aol said she normally ties her children on the pole of her only hut to prevent them from escaping and to allow her do other domestic chores.

'It’s painful because it has tied me down from doing other work in the home and I don’t see them surviving in the near future," she said.

Ajuleta lost her first born to nodding disease in November last year and is afraid that she might lose her three surviving children who are also battling the mysterious disease.

Pabit LCI Chairman Mr Robert Okot said that out of the 1200 households in his village 19 children have severe cases of nodding disease and five have so far died.

"We have not seen any health workers here and parents go and buy the drugs from Angagura health center II," Okot said.

The Incharge of Atanga Health Center II Mr David Nokrach declined to comment on the shortage of food in the center.

But when contacted Pader District Health Officer Dr Janet Oola said she was instructed never to speak on nodding disease, but refer to the Ministry of Health.

"We received a strict order from the ministry not to speak on the matter, I can't make any comment,"Oola told Acholi Times on phone.

On March 7, the Uganda Red Cross Society (URCS) signed an agreement with the office of the Prime Minister to distribute food rations to 10,975 families affected by the nodding disease in the affected areas.

The items included 400 bags of maize Flour, 200 bags of beans and 600 bags of fortified food which were supposed to be distributed to treatment centers.

In a press release, URCS General Secretary Michael Nataka said families who attend the treatment centres will each receive 4kg of maize flour and 2kg of beans to last two weeks.

"The Red Cross as auxiliary to government is committed to working with the line ministries and stakeholders to relieve the suffering of the families,” he said.

Nodding disease has so far killed more than 300 children and affected over 4000 in the region. 

A joint assessment by OPM, MOH, World Vision and Uganda Red Cross Society recently establishes that 556 households (3432 people) in Kitgum, 174 households (1,101 people) in Lamwo and 1,125 households (6, 442 people) in Pader district are affected by the disease and would benefit from the food and non-food items.