Lennox-Gastaut syndrome (LGS) is a severe type of epilepsy. This condition causes frequent seizures that typically don’t respond well to medicines. LGS often starts early in childhood and can feel overwhelming for families. However, seizures are only the tip of the iceberg. Behind these seizures lie a series of hidden health risks, also known as comorbidities (co-occurring conditions), which are important to understand. In this article, we’ll delve into these risks, their impact, and strategies for managing them.

Lennox-Gastaut syndrome is a rare form of epilepsy. It usually starts in early childhood — often between ages 3 and 5 — but can show up later, even in adulthood. LGS is characterized by different types of seizures, which include:

• Tonic seizures (stiffening)
• Atonic seizures (sudden drop attacks)
• Atypical absence seizures (brief loss of consciousness)
• Myoclonic seizures (sudden jerks)
• Tonic-clonic seizures

Problems with thinking and learning, called cognitive impairment, show up in almost all children and adults with Lennox-Gastaut syndrome.

Seizure control through medications or other types of therapy is the primary treatment goal for people living with Lennox-Gastaut syndrome. However, it’s important to be aware of the other health conditions that are likely to show up alongside LGS.

Cognitive Impairment

Problems with thinking and learning, called cognitive impairment, show up in almost all children and adults with LGS. Children often face developmental delays that affect learning, memory, and problem-solving. These delays occur because the syndrome affects the brain. Over time, intellectual disabilities may develop and can range from mild to severe. These problems can make school and social activities more difficult.

Cognitive (thinking) or intellectual impairments happen after the onset of seizures. These issues may present as developmental delays or regression (loss) in motor skills such as sitting and crawling.

Lennox-Gastaut syndrome is a type of epileptic encephalopathy. This means that the seizures and unusual brain activity seen on a test called an electroencephalogram (EEG), which looks at electrical patterns, can harm how the brain grows and works. Over time, these problems can make learning, thinking, and overall development more challenging.

As LGS gets worse, seizures can damage the brain, leading to greater problems with thinking and learning. From 75 percent to 95 percent of people with Lennox-Gastaut syndrome may have severe intellectual disability five years after seizures start. However, a small percentage of adults with LGS can go on to live independently.

Interventions can provide valuable support. Special education programs, speech therapy, and occupational therapy are all options to consider. Early engagement with these therapies can make a big difference in development.

Behavioral Disorders

Nearly all people with LGS will develop some type of behavioral problems, such as hyperactivity, aggression, self-injury, or difficulty following routines. Emotional problems like anxiety and depression are also common and may stem from the stress of seizures or medication side effects.

Structured routines and behavioral therapies can provide stability and support for individuals with LGS. Medications may also help manage symptoms. Working closely with healthcare providers to develop a personalized care plan can address behavioral challenges and boost emotional well-being.

Autism Spectrum Disorder

Autism spectrum disorder shows up in 15 percent to 35 percent of people with epilepsy and is even more likely to affect people with both epilepsy and intellectual disability. Autism spectrum disorder is less common in LGS than other types of epilepsy, such as Dravet syndrome. In one small study, just 3 out of 50 people diagnosed with LGS displayed autistic behaviors. However, none met the full diagnostic criteria for the condition.

Some common signs of autism spectrum disorder include the following:

• Challenges with social communication, such as difficulty understanding or using language and gestures
• Repetitive behaviors, such as lining up toys or repeating phrases
• Heightened sensitivity to sensory stimuli, such as lights, sounds, textures, or smells

Addressing these symptoms often involves therapies tailored to autism. This might mean seeing a therapist or psychologist for an assessment first. They may recommend treatments like applied behavioral analysis or sensory integration therapy.

Physical Health Risks and Injuries

Frequent seizures increase the risk of injuries, including broken bones and head injuries. Tonic seizures and drop attacks are especially dangerous because they can lead to falls. Other risks include choking during seizures or while eating, as well as breathing issues during or after convulsive seizures.

In one study, about half of people with West syndrome developed Lennox-Gastaut syndrome.

Physical trauma is of particular concern in people whose seizures aren’t controlled well by medications. To reduce the risk of injuries from falls or accidents during seizures, caregivers may want to take additional safety measures such as helmets and padded furniture, as well as supervision during risky activities. Consider working with your healthcare team to create a seizure safety plan.

Sleep Disturbances

Sleep problems are more common in people with epilepsy, including those with Lennox-Gastaut syndrome. Nighttime seizures, difficulty falling asleep, and disrupted sleep cycles can make symptoms worse. Lack of sleep can worsen seizure control and cognitive issues, resulting in a vicious cycle of troublesome symptoms.

If getting enough sleep is a problem for you or your child, talk to your healthcare team. They can refer you to a sleep specialist who can recommend strategies for your situation. These might include setting up consistent bedtime routines, trying melatonin supplements, or taking certain medications. Seizure monitors designed for nighttime use may also provide some peace of mind.

Gastrointestinal Problems

People with LGS may have gastrointestinal problems, such as constipation (difficulty pooping). These issues result from brain-related factors, an unbalanced diet, or medication side effects. Gastrointestinal problems may also occur with dietary regimens to improve seizure control, especially the ketogenic diet, which is high in protein and low in carbohydrates. Some studies suggest that other diets, such as low glycemic index therapy, may be easier to tolerate. A dietitian can help tailor the diet to better manage gastrointestinal issues.

Mental Health Concerns

Living with Lennox-Gastaut syndrome can be emotionally draining for individuals and caregivers and lead to depression, anxiety, and feelings of isolation. The constant stress of managing seizures can cause burnout. Side effects of treatment can also add to the risk of mental health issues. In addition, scientists believe that people with epilepsy might also have disruptions in brain areas that regulate mood.

Support groups and counseling can provide resources and support. Seeking help from a therapist can help you deal with the stress related to LGS.

Other Associated Conditions and Hidden Health Risks

LGS often occurs with or may be caused by other neurological conditions. Some of the most common conditions linked with LGS are:

• West syndrome (also known as infantile spasms syndrome)
• Tuberous sclerosis complex (a genetic disease causing noncancerous tumors)
• Viral encephalitis (brain infection)
• Brain injury from trauma or an infection (such as meningitis)

West syndrome, a disorder of epileptic spasms and abnormal brain patterns in babies, can lead to LGS in some children. In one small study, almost 50 percent of people with West syndrome will develop LGS as well.

Medical comorbidities are also common. Researchers have estimated that obesity and overweight affect about 80 percent of people with LGS, and 44 percent develop upper respiratory tract infections.

Managing LGS requires a team of specialists working together. Your healthcare team might consist of neurologists, pediatricians, therapists, and dietitians. Regular checkups and treatment plan adjustments are essential to managing both LGS and its hidden health risks. A symptom diary or seizure tracker app can help you identify patterns and make changes accordingly.

If you’re caring for someone with LGS, it’s important to stay proactive. Discuss all concerns, from seizures to developmental challenges, with your healthcare provider. Early intervention and a comprehensive care plan can greatly improve seizure control and overall quality of life. Support from a dedicated care team, emerging treatment options, and community resources can make living with LGS more manageable. You don’t have to face this journey alone — help is available.

Talk With Others Who Understand

MyEpilepsyTeam is the social network for people with epilepsy and their loved ones. On MyEpilepsyTeam, more than 124,000 members come together to ask questions, give advice, and share their stories with others who understand life with epilepsy.

What other conditions have you dealt with alongside Lennox-Gastaut syndrome? Share your experience in the comments below, or start a conversation by posting on your Activities page.