Building the right LGS care team: Who you need and when
Fact-checked by A child with Lennox-Gastaut syndrome (LGS) has unique medical needs that can benefit from multidisciplinary epilepsy care. While the condition is defined mainly by seizures, some children with LGS can also develop cognitive impairments, developmental delays, or behavioral issues. For this reason, building a personalized, multidisciplinary LGS care team is key in successfully managing the condition.
The central role of the pediatric epileptologist
A pediatric epileptologist is a doctor who has specialized training in the care of children with epilepsy or seizure disorders. Pediatric epileptologists are typically the lead Lennox-Gastaut specialist on a care team, and one of the first healthcare providers your child may be referred to.
Children with LGS may have multiple types of seizures, and they may have seizures that are difficult to control. Because of this, they can require a combination of medications for adequate management. A pediatric epileptologist is well-versed in choosing appropriate medications, adjusting doses over time, and monitoring for medication-related side effects.
Other roles of your child’s pediatric epileptologist include:
- interpreting complex electroencephalogram results
- recommending specialized treatments, such as ketogenic diets or surgery
- monitoring changes in seizure patterns
- reassessing LGS treatment plans
Why you need a neuropsychologist
Because children with LGS often have cognitive issues, developmental delays, or behavioral problems, they can significantly benefit from having a neuropsychologist on their care team. A neuropsychologist is a psychologist with expertise in how certain injuries and disorders affecting the brain can affect learning and behavior.
According to the Epilepsy Foundation, about 70%-80% of children with LGS have experienced developmental or neurological problems before seizures even start. This is where a neuropsychologist can step in.
Through cognitive tracking or various assessments of memory, attention, speech, and problem-solving skills, neuropsychologists can evaluate how LGS affects your child’s learning, thinking, and behavior. This helps them determine the severity of your child’s condition and assess the impact of LGS on learning and growth. Your child’s neuropsychologist can then create a treatment plan that addresses any specific behavioral problems and cognitive challenges.
Adding physical, occupational, and speech therapists
If your child has functional limitations, such as difficulty feeding, communicating, or moving, integrating physical, occupational, and speech therapists into the LGS care team can help. Early engagement in these types of supportive interventions can be valuable for development.
Physical therapists can support children who have difficulty with movement or coordination. They may recommend stretching or specific types of exercise to improve strength and mobility.
Occupational therapists are specifically trained to address the impact of LGS on your child’s daily life. They can help improve your child’s ability to perform daily tasks, such as getting dressed, eating, and playing.
Getting help from a speech-language pathologist may be valuable if your child has speech delays, difficulty communicating, or swallowing problems. These healthcare professionals may be especially beneficial if your child has an individualized education plan (IEP), as they can collaborate with the school to develop a curriculum that caters to your child’s needs.
Your child’s pediatrician or pediatric epileptologist can provide a referral to therapists, depending on your child’s needs.
Finding a social worker for family and school support
The impact of LGS goes beyond a child’s medical needs. Finding a social worker can help parents and caregivers obtain resources to navigate the emotional, financial, and educational aspects of care and maximize a child’s quality of life.
Social workers can:
- help your family navigate building an IEP by explaining your rights and recommending individualized accommodations
- recommend financial resources and help your family apply for financial assistance programs, as well as help with insurance issues
- help facilitate communication among all of your child’s healthcare providers, so everyone is on the same page regarding your child’s care
Facilitating communication between all specialists
Maintaining continuity of care can be tricky if your child has multiple providers on the care team. Ideally, all specialists will communicate directly with one another, but caregivers are often the ones ensuring everyone is up to date and working toward the same goal.
Here are some ways you can encourage collaboration among your child’s LGS team:
- Identify the provider that is the primary point of contact.
- Ask specialists to send medical notes and recommendations to your child’s primary provider contact.
- Keep a journal of any changes in your child’s condition, development, behavior, or speech, and share this information with healthcare providers.
- Relay medical recommendations to therapists and school nurses.
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.
