The forgotten victims of nodding syndrome

For the last three years, Vicky Aparo, now 18 and her young brother Charles Onencan, 15, have been at Kitgum hospital, battling nodding syndrome since they were first admitted at the facility in early March 2012.
The children were brought to the facility by their maternal grandmother, Christine Auma, after her daughter and the mother of the children and their father abandoned them when they developed the syndrome in 2010.
Auma, a resident of Awere village in Amida Sub-county, Kitgum District, says Aparo who was in Primary Three at the age of 14, was a pupil of Amida Childcare and Primary School in Amida sub-county together with her brother Onencan.
“Aparo started nodding and could not go to school anymore and after a while, her brother also started nodding. No one had a clue what had befallen the children and their parents abandoned them one by one,” recalls their grandmother.
Their father abandoned them claiming he could not take care of useless children and that catering for them was wastage of resources.
According to their grandmother Auma, the children’s father left to marry another woman whom he thought would bear him “normal” children and has not returned since.
“My daughter too got engaged in another affair, leaving the children with no one to fend for them. Owing to their failing health, I decided to take care of them,” says Auma.

Years of admission
“Upon admission at the facility, I had no idea that the hospital would become my home for all these years, the condition of my grandchildren was too severe that I did not think they would live the next day, but now they are better,”
Auma says she is grateful to the health workers at Kitgum hospital for the care given to her and the children. At the time the children were admitted at the hospital, they were all malnourished.
“I used to tie and lock the children in the house so that I could go to the garden to find food for the children since I was the only breadwinner at the time,” she recalls.
At the hospital, Auma adds, she has made friends who always give her the basics and sometimes, she washes clothes for money in order to buy food for the children.

Time to go home
Much as the children have improved, Auma says going back home will mean that the children’s health will deteriorate since she will have to look for food and attend to the children since their health is not very stable.
Also, Auma reveals that at the moment, she has nowhere to call home since her land was encroached on by family members.
“I am left with a small space to put up my hut, but resources are not available. I wish a Good Samaritan would put up a hut for me so that I can begin a new life and see my grandchildren getting back on their feet,” she appeals.
Barbra Loum, the in-charge of nodding syndrome ward at Kitgum hospital, says when the children were first admitted, they were both unable to talk or recognise anyone.
“They used to have seizures twice or thrice a day, but because of the medication, the seizures have reduced. At times they go for two weeks without seizures,” she says.

Loum adds that the children can go back home but they will need to be monitored. We hope they will get back on their feet and continue with their education.

“According to our interactions with Aparo, she is willing to get back to school, but Onencan, feels more comfortable painting,” Loum says.

At the moment the nodding syndrome ward has six children who are showing signs of recovery.

On the nodding syndrome ward
“On average, there are between 3-15 admissions on a daily basis. Sometimes the children are re-admitted because they are not catered for well by their parents and guardians thus resulting into retardation,” explains Loum.

She adds that in the outpatient department, over 300 children visit the facility for control on a monthly basis.

“ In most cases, these children develop malaria, diarrhoea, malnutrition, seizures and burns are very common since many children are left at home alone and when they develop the seizures they end up falling into fires,” she says.

Dr Geoffrey Akena, the focal person nodding syndrome Kitgum District, says the hospital has done its best and they feel Auma’s grandchildren can be discharged.

“However, whenever we aise Auma to go back home, she points out at very many challenges at home, but we feel she needs to get back home. She cannot b forever. We do not intend to abandon her, we shall visit her often and engage her other family members to support her, and also call for well-wishers to help her and the children,” says Dr Akena.

He adds the condition of the children has improved although sometimes they relapse when there is no one to look after them since their grandmother has to go out and do casual work in order to earn money to buy food.

About nodding disease

Nodding disease is a neurological condition which mentally and physically retards children.
The syndrome affects children on average between the ages of 5 and 15.

The condition was first documented in the United Republic of Tanzania (URT) in the 1960s, then later in the Republic of South Sudan in the 1990s. In Uganda, the disease was first reported in 2003.

At least 6,000 children in Acholi sub-region were affected by the syndrome and at least 300 lost their lives.
Affected children develop the characteristic nodding of the head, seizures, malaria, diarrhoea, malnutrition and severe disability.

Sodium valpolate and fortified foods have helped in the reduction of seizures in children. It is estimated that 10 percent of children recovering from the syndrome have talking and walking difficulties.

Despite numerous and extensive investigations in all three countries where the disease has been recorded, very little is known about the cause and mode of spread of the disease are still unknown.

challenges of treatment for nodding syndrome patients

According to Dr Geoffrey Akena, the focal person for nodding syndrome in Kitgum District, the food support towards the nodding syndrome patients has become irregular.

Other challenges that affect children recovering from nodding syndrome include irregular visits by medical personnel to monitor affected children to assess the progress of recovery.

According to Dr Akena, since January this year, the medical personnel who assess the situation of the children on the ground have never received funds to facilitate them.
“Each time the health workers go for outreaches, they are supposed to be given safari day allowances of Shs17,000, for food and other basics, but it has not been the case, something which has demoralised them,” he says.

Dr Akena adds that as a result, some health workers have shunned outreach programmes as many cannot give services on an empty stomach.

There are 10 medical workers on average who are contracted to carry out regular outreaches in the areas out Tumanguu, Okidi and Kitgum outreaches.

“The essence of the outreach programmes was to cater for those afffected families who cannot trek for kilometres to reach the major health centres in the district. Many parents could not walk for long distances with their sick children to access medication,” says Akena.

“The workers have not laid down their tools per se, but they are irregular in turning up for outreach programmes, yet to us the home visits are vital, since it is on that basis that the condition of the children is assessed,” explains Dr Akena.

District medical authorities have appealed to the medical workers on the outreach programmes to remain calm and bear with the situation as they also engage the ministry to remain committed in delivering the funds on time.

The coordinator nodding syndrome in the Ministry of Health, Dr Bernad Opar, noted that healing is a process that requires combined efforts between the parents and medical workers.

The Ministry of Health is in touch with the Ministry of Agriculture to determine how improved seeds can be given to the affected families so that they can have fast-growing food crops to sustain their families.

Kitgum District has 583 cases of nodding syndrome and 1,451 cases of both nodding syndrome and epilepsy.