A report by the Parliamentary committee on Gender, Labour and Social development on the nodding disease has pointed out that affected children are being injured as parents try to contain them from wandering due to their illness.
Families affected by Nodding syndrome are struggling to manage affected children as treatment remains at large, the Parliamentary committee on Gender has said.
Nodding Syndrome is a mysterious illness that affects the brain and nervous system of children, primarily between the ages of 5 and 15. Children display a sleepy appearance and appear to "nod off" and lose contact with the world around them.
An estimated 3,000 children in Gulu, Kitgum, Lamwo, and Pader are suffering from nodding syndrome. The disease is only managed through physiotherapy, nutrition and medications like Carbamazepine, a medication used primarily in the treatment of epilepsy and neuropathic pain, which are also scarce.
A report by the Parliamentary committee on Gender, Labour and Social development after their tour of Northern Uganda last year, has pointed out that the children are being injured as parents try to contain them from wandering due to their illness. The committee notes that the rights of children with nodding syndrome are abused by their parents, who tether them on trees, lock them in the same shelters with animals and inject them with medication to make them sleep.
Beatrice Atim Anywar, the Kitgum Municipality MP, who is part of the committee, notes that access to medicine for the affected children is difficult as medical facilities are far but also out of drugs and human resource.
"They tie them up and others are locked in houses…because some parents feel they are tired of handling the cases. But the worst case is that some of these children are getting convulsions just because they do not have food. Government has a responsibility to ensure that these children are catered for," she says.
The committee sought to find out the management and the effect of nodding syndrome in the affected areas. They now want the affected communities to be supplied with oxen and ox ploughs as the parents now have a full-time engagement in taking care of the children.
Anywar also says the Health centre two near Tumangu in Kitgum district should be upgraded to a health centre IV for referral purposes and Carbamazepine should be made an essential drug.
She notes that two of the rehabilitation centres in Odek and Tumangu sub counties are privately owned but should be taken over by the government.
"More rehabilitation centres should be constructed by the Government, for instance in Pader, since the cases of nodding syndrome there are overwhelming. Government should take keen interest in this and not wake up at a time when there is an epidemic," Anyway said.
The committee notes that little effort has been put by the Government in supporting the affected children, while research has also yielded little on the disease.
According to the Centre for Diseases Control (CDC), the immediate cause for the nodding has been discovered to be atonic seizure, also called drop seizures, or drop attacks that consist of a brief lapse in muscle tone that are caused by temporary alterations in brain function. Associations of the disease with malnutrition and with onchocerciasis, or river blindness, have been documented, but remain inconclusive.
CDC notes that it continues to analyse specimens and other information from affected children.
Hope for recovery of the children affected by the disease is being lost as Hope for Humans, an organisation that has been supporting these children announces its plans to pull out.
The organization has been providing food supplements, medicine, and education for over 300 children in Northern Uganda since 2012.