Sunday, April 22, 2012

Hope comes to Uganda nodding disease patients

By Esther Nakkazi

When President Yoweri Museveni visited the young patients suffering from head-nodding syndrome admitted at Mulago referral hospital in Kampala, last month, he promised a massive spray of insects as part of the strategy to wipe it out.

“The government will kill all insects by spraying and treat all people at once,” said Museveni urging the young patients to also complete the dosage prescribed to avoid re-emergence.

Museveni was taking a militaristic strategy and not waiting for a science evidence-based approach. He disassociated nodding syndrome from HIV/AIDS because it is ‘curable’ and the drugs to treat River Blindness are available in Uganda.

In a Phase I among cases and controls for serologic testing, the only significant finding found by investigations was that ‘nodding syndrome cases were more likely to have antibodies against O. Volvulus (the black fly-borne parasite known for causing River Blindness) than controls.’ But that was not conclusive.

Now the government has released Ush 2.7 billion ($1.2 million) for treatment and screening centres. Within less than a month of setting these up at least 597 children have been registered at four sites.

Most of these children arrive at treatment centres on wheelbarrows but the majority are not showing up due to lack of transport and no ambulances in the area.

The treatment centres are stocked with anti-epileptic drugs such as Sodium Valproate as well as multi-vitamin and nutrient supplementation. All this is part of the Ush 7 billion ($2.8 million) response plan now underway.

Village health teams are doing community surveillance, identification, follow-up of cases and distributing fortified foods –maize and beans.

Similarly in south Sudan, Centres for Disease Control (CDC) recommended reinforcing mass Ivermectin treatment for and conducting seizure management using antiepileptic medications.

Some parents have testified that their children ‘feel better’ with anti-epileptic drugs while researchers have found most affected children have vitamin B6 deficiency and other micronutrients (Vitamin A, Selenium and Zinc). However, these deficiencies were also present to a big extent with children in the same area without nodding syndrome says some CDC studies.

The focus is now on potential treatment through clinical trials. Nodding syndrome started in 2009 and has affected 3,000 children aged 5-15 with about 200 deaths. Most of the affected are males and live in areas where Onchocerciasis is prevalent.

“The clinical trials will look at the different treatment plans,” said Dr. Anthony Mbonye, commissioner Health Service at the Ministry of Health.

Patients will be randomized to receive anti-seizure medications, or high dose vitamin B6 treatment and a crossover between the trial arms.

Start date of the trials depends on finalizing the protocol and approval by the Ethics Review Board. The survey will include four arms with the goal of enrolling about 80 children.

So far, presentation of the syndrome suggests a possible new type of seizure disorder called atonic seizure says the CDC. But there is no known cure or cause and its disability effects aroused a huge public outcry.

Nodding disease is characterized by repetitive dropping forward of the head sometimes precipitated by food or cold weather and often accompanied by seizures or staring spells.

During these episodes children appear non- responsive with a deterioration of brain function. Generally there is growth retardation due to malnutrition.

Now the very sick are admitted at treatment centres but previously, parents just tied them on trees as they went about their daily chores. The community and siblings of the affected children shun them as if it were contagious.

A team with social workers, psychiatrists, environmentalists, clinicians, ecologists, epidemiologists, and nutritionists is being assembled.

“We are giving an opportunity to different professionals to conduct research in different areas,” said Dr. Jane Acheng the Director General of Health Services at the Ministry of Health.

“There are many aspects of Nodding Syndrome that need study and support. Research is one fundamental area to which WHO and CDC are committing considerable time and resources,” said Dr Joaquim Saweka WHO Representative to Uganda.

“We need to know exactly what causes Nodding Syndrome; what are the best treatment options; what does NS eventually result into; and what are its social impact in the affected communities” noted Dr Saweka.

Investigations into the possible cause or causes by CDC have been extensive but without conclusions; excluding more than 3 dozen possible infectious, toxic, nutritional possible causes, including hundreds of possible viruses.

“We share the frustration. We do not have the underlying cause, but we need continued collaboration,” said Dr. Scott Dowell the director of the Division of Global Disease Detection and Emergency Response (GDDER) at CDC.

“Discovering the cause or cure may be far in the future,” said Dr. Dowell at a press conference held at the American embassy in Kampala. “Our hope is that the clinical trial will give clinicians and families a better idea of how to treat the children.”

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