Dennis and Nodding Syndrome, One Year Later
by Trina Chase, Africa Program Manager
Sitting on a simple wooden bench under a mango tree, Mr. Ojok Kosmu sighs and begins to tell how his family has been affected by Nodding Syndrome. Kosmu is a farmer and a family man. He has twelve children, two of whom are boys with Nodding Syndrome.
Kosmu’s family was displaced during the conflict in Northern Uganda. Ayalle, his older son, first showed symptoms of Nodding Syndrome at an Internally Displaced Persons camp in Gulu. In the camp, Ayalle would have fits when food was placed in front of him and would fall to the ground, screaming. When the family returned to Pader in 2008, Kosmu tried to treat Ayalle with various drugs and traditional medicine, unsure of exactly what was ailing his son.
In 2010, a younger son, Dennis, also began to show signs of Nodding Syndrome. Like Ayalle, Dennis would also have fits and fall to the ground. He would also sometimes become mad and run into the forest, forcing his family to search for him. This caused so many problems that his family would sometimes tie him to a house or tree to keep him from running away.
Kosmu tried various medications that worked with varying results. He says that the best improvement he has seen in both his sons has been recently, when they were placed on sodium valproate from Medical Teams International donors.
Today, Ayalle’s health has improved. Now on medication, he no longer falls and he can eat regularly. However, he will sometimes scream and he usually sits by himself in the dirt, unresponsive and inactive.
Dennis, on the other hand, has experienced dramatic changes in response to being on medication. He has been on sodium valproate since March 2012 and his fits are controlled. He seems fully recovered and has returned to school. After school, Dennis helps his father in the fields, sweeps the family compound and fetches water. After his chores are done and like most Ugandan boys his age, he finds his friends again to play soccer.
Nodding Syndrome is a mysterious mental and physical disease. It is a degenerative illness in children that causes convulsions making it difficult for the children to eat. As a result, many affected kids suffer from severe malnutrition. Others sustain serious injuries from falling into open water or fires during convulsions.
Our fight against Nodding Syndrome remains strong. We are determined more than ever to help more Ugandan children and to date, we are:
- Monitoring 323 children with Nodding Syndrome,
- Testing voluntary participants for HIV and AIDS to prevent more serious complications, and,
- Training more than 130 caregiving on effective care of patients.
To help more children recover like Dennis, visit www.medicalteams.org/GiveAGift.