Helping siblings understand and adjust to life with LGS
Fact-checked by Siblings of children with Lennox-Gastaut syndrome (LGS) grow up witnessing seizures and facing the uncertainty that can come with severe epilepsy. Many feel deep love and protectiveness toward their brother or sister. Yet they may also worry about their sibling’s health, or feel deeply frustrated and unseen by their parents.
Research reveals that siblings of children with epilepsy often experience emotional burdens that parents may not recognize. It also suggests that strategies, such as involving siblings in seizure plans and prioritizing one-on-one time, can help them feel happier and better equipped to cope with the challenges.
Validating the unique experiences of LGS siblings
Validating the experiences of LGS siblings helps them feel seen, understood, and better able to process difficult emotions.
Research shows that siblings of children with epilepsy experience significant, persistent strain. Yet many parents miss the signs, according to the 2017 Sibling Voices Survey.
- Fear of death: 79% of young siblings aged 9-12 expressed a deep fear that their brother or sister might die from their condition.
- Persistent unhappiness: At least 47% of young and adult siblings reported frequently experiencing feelings of unhappiness (“sometimes” or “a lot”).
- Visibility gap: While 42% of young siblings (aged 9-12) self-reported high levels of sadness, only 14% of parents actually recognized the issue.
Without validation, these emotional challenges can contribute to glass child syndrome. Glass child, discussed more at the end of this article, is a psychosocial phenomenon that describes siblings of children with chronic illness who feel overlooked within the family dynamic.
How to explain LGS to a brother or sister
Research shows that honest, age-appropriate conversations around LGS help siblings better understand the disease and reduce fear around medical emergencies.
Many children imagine worst-case scenarios when they do not fully understand what is happening. Openly explaining Lennox-Gastaut to children helps them feel more secure.
Keep explanations simple and ongoing
You do not need to explain everything about LGS at once. Supporting siblings of special needs kids means having smaller, ongoing conversations that are much easier to process.
Simple analogies and reassuring language can make seizures feel less frightening. For example, you might explain that the brain works like the body’s computer, sending messages that tell the body how to move and speak. During a seizure, the “computer” sends mixed signals, which can cause someone to fall, stare, shake, or stop talking for a period of time.
Siblings may also need help understanding that seizures can sometimes lead to injuries, hospital visits, or limitations around play.
Use books and visual resources
Explaining Lennox-Gastaut to children may be easier if you use stories, pictures, or activities. These mediums can help siblings process their feelings and ask questions they may not yet know how to raise.
- For emotional exploration: “My Sibling is Special” is a child-friendly illustration book that helps children explore emotions and family changes related to rare epilepsy. The author wrote the book based on real sibling stories.
- For medical understanding: “Medikidz Explain LGS” is a medically-reviewed comic-style series that follows a young girl named Tenley. Superhero characters teach Tenley how LGS affects her brother Jackson’s brain and body.
Talk honestly about the future
Siblings may worry about what life will look like for their brother or sister with LGS. Reassuring them that adults are responsible for long-term care decisions can help reduce anxiety and pressure.
As siblings grow older, many may make plans to facilitate future care for their brother or sister. Ideally, however, they should not have to feel that future caretaking duties automatically fall to them.
Parents considering passing some responsibility to older children may want to consider having the conversation sooner rather than later.
- Initiating the conversation before the sibling brings it to their attention, even if you don’t have a solid plan.
- Easing into the topic by asking, “Have you thought about your sibling’s future care? What are you envisioning?”
- Reassuring the older sibling that you don’t expect them to take on 100% of the caregiving responsibilities.
- Avoid trying to cover several topics in a single conversation. Instead, address future plans through multiple conversations over time to prevent the sibling from feeling overwhelmed.
Encourage questions
Regular check-ins help children feel more comfortable talking about difficult emotions related to LGS and siblings.
Simple questions might include:
- “How have you been feeling about everything lately?”
- “Has anything about your sibling’s seizures been scary for you?”
- “Do you ever feel left out when things get busy at home?”
- “What has been the hardest part for you lately?”
Balancing attention in a high-needs household
Dedicating time each week to LGS siblings helps maintain a healthy family balance and reminds them that they matter. Small moments of one-on-one connection can also reduce the resentment, unhappiness, and isolation that can come from being the “healthy” child in a high-needs household.
Small gestures can help LGS siblings feel prioritized, including:
- weekly rituals like getting ice cream, visiting a favorite restaurant, or watching a movie
- sharing a hobby like baking, gardening, or video games
- spending uninterrupted time talking before bed
Consistency often matters more for family balance with LGS than elaborate plans.
Encouraging a supportive sibling bond
LGS siblings often build stronger relationships with their brother or sister when they have opportunities to spend time together outside stressful medical situations. Some also appreciate the opportunity to participate in their brother or sister’s LGS care.
Create opportunities for connection
Simple, sensory-friendly activities can help siblings build a repertoire of happy memories.
Ideas to foster connection include:
- listening to music
- watching favorite movies or cartoons
- reading books together
- doing crafts or coloring activities
- visiting a park or playground
- joining adaptive sports or inclusive swimming programs
Involve siblings in ways that feel comfortable
Inviting siblings to participate in small, age-appropriate ways to help during seizures may also help them feel happier and closer to their brother or sister with LGS. The Sibling Voices Survey found that up to 76% of siblings who had more knowledge about the disease and/or knew how to help during a seizure reported fewer mood issues.
Some siblings may want to help with:
- alerting an adult
- grabbing medication
- watching for the ambulance
Giving children choices rather than forcing them to participate is important. Some younger siblings may prefer to retreat to a quiet “safe space” during emergencies. However, when they choose to participate, they may feel connected to their brother or sister and less likely to feel resentment.
Recognizing signs of glass child syndrome
Siblings of children with LGS who suddenly become more mature than their age, emotionally distant, or intensely independent may be repressing their true feelings. Recognizing these glass child behaviors early can help prevent siblings of children with LGS from quietly carrying feelings of neglect and internalized guilt.
Glass child syndrome warning signs include:
- constantly trying to avoid being a “problem”
- hiding sadness, anger, or jealousy
- refusing help or insisting they are “fine”
- isolating themselves from family or friends
- acting more like another parent than a sibling
- sudden emotional outbursts after staying quiet for long periods
- losing focus or motivation at school
Watching for signs of repressed feelings, having honest conversations, and dedicating time to siblings can prevent these patterns from becoming long-term struggles. Checking in regularly, listening intently, and encouraging a strong bond with their brother or sister can also make siblings more emotionally secure.
With an intentional approach, parents can create a healthier family dynamic despite the daily challenges of LGS.
Lennox-Gastaut Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
