A 10-year-old girl developed a rare and serious condition called FIRES that caused uncontrollable seizures after a simple fever. Normal seizure medications didn’t work, so doctors tried a combination approach: special immune-fighting medicines, a high-fat diet, and cooling her body temperature. This combination treatment worked, and she recovered with only minor memory and thinking changes. This case shows that using multiple treatments together—rather than just one—might be the key to helping children with this life-threatening condition. Doctors are now calling for larger studies to confirm these promising results.
The Quick Take
- What they studied: Can a combination of immune-suppressing drugs, a special high-fat diet, and controlled body cooling help children with FIRES—a rare, severe seizure disorder that doesn’t respond to normal seizure medications?
- Who participated: One 10-year-old girl who was healthy before developing FIRES after a fever. She had seizures that wouldn’t stop despite trying multiple standard seizure medications.
- Key finding: The girl’s seizures stopped and she recovered well when doctors used a combination treatment plan including immune-suppressing medicine (anakinra), a ketogenic diet (high-fat, low-carb), and induced hypothermia (controlled cooling). She had only minor thinking and memory problems afterward.
- What it means for you: If you have a child with FIRES or similar severe seizure disorders, this case suggests that trying multiple treatments together—especially immune therapy and dietary changes—may work better than single treatments. However, this is just one patient’s story, so talk with your doctor about whether this approach is right for your situation.
The Research Details
This is a case report, which means doctors documented the detailed medical story of one patient with FIRES. The girl was 10 years old and previously healthy when she developed seizures after a brief fever. The doctors performed extensive testing including a spinal tap, blood work, continuous brain wave monitoring, brain imaging, and tests for autoimmune and infectious diseases to understand what was causing her condition.
When standard seizure medications failed to control her seizures, the medical team switched to a multimodal (multiple-treatment) approach. This included intravenous corticosteroids (strong anti-inflammatory medicines given through an IV), immunoglobulins (antibodies to help fight the condition), a ketogenic diet (a special high-fat, low-carbohydrate eating plan), and induced hypothermia (carefully lowering body temperature). The doctors tracked her progress over time to see how she responded.
Case reports are important for rare diseases like FIRES because they show what treatments might work when standard approaches fail. This detailed documentation helps other doctors recognize the condition and try similar approaches. While a single case can’t prove something works for everyone, it provides valuable clues that larger studies should investigate further.
This is a single case report, which is the lowest level of scientific evidence. It shows what happened with one patient but cannot prove the treatment will work for all children with FIRES. The strength of this report is the thorough testing and documentation of the patient’s journey. The weakness is that we cannot know if the improvement was due to the treatments, the body’s natural healing, or a combination of factors. Larger studies with many patients are needed to confirm these findings.
What the Results Show
The 10-year-old girl developed FIRES after a brief fever and experienced severe, uncontrollable seizures despite receiving high doses of multiple standard seizure medications. When the medical team switched to the combination approach—using immune-suppressing medicines, a ketogenic diet, and controlled body cooling—her seizures gradually stopped.
The girl’s condition improved significantly over time. She was eventually able to leave the intensive care unit and return home. Brain imaging and other tests showed improvement in her condition. Her recovery was considered successful, meaning she regained normal functioning and was able to resume her life.
The most important finding was that the combination of treatments appeared to work when individual medications had failed. The doctors noted that starting the immune-suppressing drug (anakinra) early and beginning the ketogenic diet quickly may have been key to controlling the seizures and reducing how long she needed to stay in the hospital.
After recovery, the girl had only mild neurocognitive sequelae, which means she experienced minor problems with memory and thinking skills. These were much less severe than what typically happens with FIRES. The girl’s overall quality of life was good after treatment, and she was able to function well in daily activities and school.
FIRES is a recently recognized condition, and doctors are still learning how to treat it best. Previous cases in medical literature have shown that FIRES is very difficult to treat and often causes serious, long-lasting brain damage. This case is notable because the patient recovered much better than typical FIRES cases. The multimodal approach used here—combining immune therapy, dietary changes, and temperature management—represents a newer strategy that differs from traditional single-medication approaches.
This is a single case report involving only one patient, so we cannot be certain the treatment will work for other children with FIRES. Different patients may respond differently based on their age, genetics, and other health factors. We don’t know which part of the treatment combination was most important—the immune medicine, the diet, the cooling, or the combination of all three. The girl’s recovery could have been influenced by factors we don’t fully understand. Larger studies with many patients are needed to confirm these results and determine the best treatment approach for all children with FIRES.
The Bottom Line
For children with FIRES that doesn’t respond to standard seizure medications: Consider discussing a multimodal treatment approach with your medical team that may include immune-suppressing medicines (like anakinra), a ketogenic diet, and possibly induced hypothermia. Early treatment appears important. This recommendation has low to moderate confidence because it’s based on one case, but it suggests a promising direction for future treatment. Always work with experienced pediatric neurologists and intensive care specialists.
Parents and doctors caring for children with FIRES or severe, treatment-resistant seizure disorders should pay attention to this case. Children with other rare seizure disorders that don’t respond to standard medications may also benefit from discussing multimodal approaches. This is NOT relevant for common childhood seizures or fevers—only for the rare FIRES condition.
In this case, the girl’s seizures began to improve within days to weeks of starting the combination treatment. However, full recovery took several weeks to months. Realistic expectations are that improvement may be gradual, and complete recovery is not guaranteed for all patients. Some children may recover faster or slower than this patient.
Want to Apply This Research?
- If a child is being treated for FIRES or severe seizures, track daily seizure frequency (number of seizures per day), seizure duration (how long each lasts), and any changes in alertness or responsiveness. Record which treatments were started and when, so patterns can be identified.
- Work with your medical team to ensure strict adherence to the ketogenic diet if prescribed, as this appears to be an important part of the treatment plan. Track meals and macronutrient ratios (fat, protein, carbohydrates) using the app. Monitor body temperature if hypothermia is part of the treatment plan.
- Create a long-term tracking system that documents seizure patterns, medication changes, diet compliance, and cognitive/behavioral improvements over weeks and months. Share this data regularly with your medical team to help them assess treatment effectiveness and make adjustments as needed. Track recovery milestones like returning to school or resuming normal activities.
This case report describes the successful treatment of one child with FIRES and should not be considered proof that this treatment will work for all children with this condition. FIRES is a rare, life-threatening medical emergency that requires immediate hospitalization and care from specialized pediatric neurologists and intensive care doctors. Do not attempt any of these treatments without direct medical supervision and guidance from your child’s healthcare team. This information is educational only and not a substitute for professional medical advice. Always consult with qualified medical professionals before making any treatment decisions for a child with seizures or FIRES.
