9-year-old Kurnool boy treated for rare & deadly epileptic syndrome NORSE

Hyderabad: A nine-year-old boy who was suffering from the rarest form of NORSE (New-Onset Refractory Status Epilepticus) disease was successfully treated by KIMS Hospital, Kurnool.

Deepak, a class IV student living in Adoni, Kurnool was admitted to KIMS in March after suffering four episodes of epilepsy and fever. Because of his frequent seizures and lack of awareness, the boy was placed on a ventilator at the time of admission.

Pediatric neurologist Dr. Swetha Rampally, and pediatric critical care specialists Dr. Naveen Reddy, Dr. Vasu, and Dr. Ravikiran promptly attended to the youngster. “Both the pediatric neurology team and the pediatric critical care team accepted accountability. Due to possible meningitis (brain infection), he began receiving antibiotics and neuroprotective medication. However, the meningitis tests (CSF & MRI brain) came out negative,” said Dr. Swetha.

She added, “The issue had to be properly handled because it was not only unknown to the general population but also to the medical community. If not, it could be deadly.”

During the treatment, the boy was put on anti-seizure drugs and was put into a coma since he had frequent, numerous seizures.

“NORSE (New-Onset Refractory Status Epilepticus) was our top guess based on the EEG pattern and clinical observations. For NORSE, he began immunotherapy. Even short seizures were detected and controlled with regular EEG monitoring. After two weeks of hospitalisation, he progressively reacted to the medication, and we were able to manage his seizures. The critical care staff handled the hard task of meticulous infection control effectively,” said Dr. Rampally.

The boy spent six weeks in the hospital. To provide the family clarity about this uncommon illness that was causing doubt, the doctors explained to them why some tests were performed, why some therapies were suggested, and what the child’s future held.

What is NORSE?

The uncommon and deadly syndrome known as New-Onset Refractory Status Epilepticus can strike previously healthy persons suddenly, mostly affecting children and young adults.

Even within the medical community, there is still little broad public knowledge of this uncommon condition. In most cases, a definite reason is still a mystery. Its clinical course is uncertain, necessitating extended critical care, neurological care, harsh treatments, and close monitoring.

It may cause fatal neurological effects, drug-resistant epilepsy, or severe life-altering neurological side effects. For improved results, almost all survivors require a variety of anti-seizure drugs and ongoing pediatric neurology follow-up visits. Early detection and the beginning of proper therapy can save lives and reduce problems.