Child with rare epilepsy syndrome gets full recovery post intensive care at K J Somaiya Hospital & Research Centre
K J Somaiya Hospital and Research Centre, one of the leading multi-specialty and super-specialty hospitals in India, recently helped an 8-year-old boy survive a life-threatening condition called Febrile Infection-Related Epilepsy Syndrome (FIRES). The condition is so rare that only about 200 cases are reported worldwide, and the estimated incidence is 3.4–7.2 per 100,000 per year.
The patient, Maaz Ansari, was admitted to the hospital presenting with persistent seizures following what initially appeared to be a routine fever. “FIRES” is characterized by the onset of difficult-to-control, frequent instances of seizures that develop following a febrile illness, despite the absence of a detectable brain infection. Maaz’s condition was so severe that he was having more than 200 seizures over a period of 24 hours.
Realizing the urgency of the situation, the medical staff decided to adopt intensive and specialized care. He was admitted to the Pediatric Intensive Care Unit (PICU), where he received specialized care including 10 anti-epileptic medications, drug-induced coma, extended ventilator support for 40 days, and nutritional management through a ketogenic diet. Diagnostic tests revealed high inflammation (IL-6 levels) in the cerebrospinal fluid (the fluid around the brain), for which appropriate anti-inflammatory treatment was administered through intravenous and intrathecal routes.
After approximately two months of intensive care, including significant time on respiratory support, Maaz’s condition stabilized sufficiently for him to be discharged. The medical team continues to monitor his progress through regular follow-up appointments, and they report that his condition remains stable.
Speaking on the successful treatment of the patient, Dr. Manisha Bobade, CEO, K J Somaiya Hospital & Research Centre, said, “In India, the instances of rare diseases and conditions being reported are increasing with each year. Such conditions not only present varied challenges in their diagnosis but in their treatment as well. FIRES is one such rare condition that needs specialized care for each patient, as there are very few cases reported around the world. Our medical team demonstrated exceptional clinical acumen in identifying this uncommon syndrome and developing an effective treatment plan which helped him recover and stabilize his condition. This case highlights our hospital’s commitment to providing specialized care for even the most challenging medical conditions.”
Detailing the patient’s condition, Dr. Irphan Ali, Paediatrician and Neonatologist at K. J. Somaiya Hospital & Research Centre, said, “FIRES is an extremely rare and dangerous condition. The triggers for this condition are often a seemingly minor, nonspecific febrile infection, such as a cold or upper respiratory infection. This infection is typically followed by the onset of super-refractory status epilepticus, meaning seizures that are difficult to control with standard treatments. Apart from this, there are several other challenges that come up for treatment, which include diagnostic, therapeutic, and long-term impact on the individual. The high mortality and morbidity rate further adds to several complications. We are proud of the support the medical staff and the hospital have been able to provide Maaz Ansari and look forward to his continued recovery.”
