“It is never too late to learn that your loved one has LGS. It is important because then you can educate yourself. You can now finally understand what your loved one has gone through, as well as prepare for the future.”
– Ajay Gupta, MD, Section Head, Pediatric Epilepsy, Cleveland Clinic
It’s a common story in the LGS community—families are told their loved one has “difficult-to-manage” epilepsy over the course of many years, but it turns out that the multiple seizure types and developmental delays may be related to a type of epilepsy known as Lennox-Gastaut syndrome (LGS). For adults, an LGS diagnosis can be hard to reach because the symptoms of LGS in adulthood may be difficult to recognize.
As children transition to adulthood, these 3 features evolve. The seizure type and frequency can change, with “drop seizures” typically becoming less frequent or potentially disappearing, and tonic seizures tending to persist, especially during sleep. Second, as people with LGS age, there’s a general slowing of intellectual function, and adults with LGS may experience complex behavioral problems such as autistic features and aggressiveness. Finally, the slow-wave pattern EEG that is typically used to diagnose LGS in children is not present in 50% to 75% of adults with LGS.
Make it a point to talk with your doctor about your loved one’s symptoms and medical history, including EEG results.