Supporting caregivers of young patients with LGS

By Naveed Saleh, MD, MS | Fact-checked by Jessica Wrubel
Published January 31, 2023

Key Takeaways

  • Caregivers should be educated on the types of seizures associated with LGS, as well as developmental/cognitive delays.

  • The burden of care and the symptoms of LGS require global adjustments to family life. Physicians should be on the lookout for caregiver depression and anxiety.

  • Support services for LGS include the LGS Foundation and the Epilepsy Information Service at Wake Forest University.

Caring for a child with Lennox-Gastaut Syndrome (LGS) can be both gratifying and exhausting. Patients with this form of epileptic encephalopathy experience a long diagnostic process, and the complexity of daily care, treatment, and support can be overwhelming.

Physicians should be prepared to advise caregivers on their role in the care of children with LGS, be on the lookout for stress experienced by the caregivers and be aware of the resources available to help when they need further support, according to the LGS Foundation.[]

Caregiver education

It’s important that caregivers understand the nature of LGS, as well as learn how to best monitor the pathology to report back to clinicians.

Caregivers should be aware of the various seizure types associated with LGS. These include the following:

  • Tonic-clonic—The classic type of seizure for LGS, this occurs in two phases. The tonic phase involves muscle stiffening, which is followed by the clonic phase, in which the muscles spasm and jerk. Loss of consciousness is also possible.

  • Atonic—The patient goes limp.

  • Myoclonic—The patient’s muscles alternate between twitching and relaxing, which presents as twitching.

  • Atypical absence—This seizure results in the patient staring blankly and being unresponsive. They can appear to be daydreaming.

Caregivers should monitor and track seizure types and relay this information back to the physician, as it can help plan effective treatments.

Physicians should educate patients on the nature of developmental delays in LGS children. Importantly, children may experience developmental delays following normal development and subsequently regress. Cognitive impairment is also a consequence of LGS.

EEG abnormalities are key in diagnosing LGS and should be discussed with parents, loved ones, and caregivers. Specifically, with LGS, there’s a slow spike-and-wave pattern in which the dips and waves are much slower than normal waves and repeat at a reduced frequency.[]

Impact on the family

Seizures in LGS are frequent and severe, and injury is a common result. Children with this condition often experience behavioral comorbidities. Cognitive impairment is nearly universal, with 90% of children affected.

“Taken together, these effects of LGS can have profound consequences for the intellectual and social development of the patients,” wrote the Epilepsy Information Service at Wake Forest University, publishing in the Journal of Multidisciplinary Healthcare (JMH).[]

"LGS can also have a tremendous negative impact on the family and caregivers, particularly the mother, who most often is the primary caregiver."

PA Gibson, Epilepsy Information Service, in JMH

The burden of care and symptoms of LGS require adjustments to nearly every aspect of daily and family life. Invariably, they may affect the entire family’s physical, emotional, social, and financial health.

Monitoring caregiver health

Caregivers play a critical role in the continuing health of patients with LGS, ensuring that they adhere to therapy, including antiseizure drugs and diet. Caregivers also provide support to help patients cope with the disease and its complications.

“It is important for [healthcare] professionals to understand how the disease affects the family,” wrote the Epilepsy Information Service in JMH. “This insight will help [healthcare] providers prepare the family for the future and give them the support needed to care for their child with LGS.”

Various studies have demonstrated that many caregivers experience physical and psychological repercussions from the combination of daily tasks needed for caregiving, as well as anxiety regarding the child’s health and future.

Because patients with LGS often need help ambulating and require wheelchairs and other special heavy equipment, caregivers often report back and shoulder pain related to exertion.

In addition to anxiety, caregivers often feel depressed and grieve for their children. Parents may feel a loss for the life that their child could have had if they were healthy.

In one study that included 80 parents of children with LGS (77 mothers and three fathers), the prevalence of major depressive disorder and PTSD was 31.5%.

Over time, the brunt of the stressors of LGS can be balanced by a sense of acceptance, according to the Epilepsy Information Service.

Families become more accustomed to LGS’ impact on their lives and enter a stage of identity readjustment. They reconcile how they view their family and child, as well as their futures, leading to a level of acceptance.

On the bright side, 74% of parents surveyed by the Epilepsy Information Service reported that having a child with epilepsy strengthened relationships with their partners, according to the JMH article.

Support services

Various resources are available to caregivers of children with LGS. According to the LGS Foundation, such support is imperative.

"The most important thing to remember is that the person you are taking care of is only as good as you are; if you do not take care of yourself, you will not be able to take care of your loved one."

The LGS Foundation

The foundation provides a support network to patients and caregivers and can serve as a resource for patients.

Another resource is the aforementioned Epilepsy Information Service at Wake Forest University in Winston-Salem, NC. In addition to offering a toll-free number for answering epilepsy-related questions, the service also offers information packets, counseling, consultations, and financial assistance for anti-seizure medications, as well as professional education.

What this means for you

LGS is a life-changing diagnosis for patients and their family members. Caregivers should be educated on the nature of the condition so that they can help monitor it. Their psychological and physical health should also be monitored, with special attention paid to anxiety and depression. Patients should be counseled on support services available to those with epilepsy.

Read Next: Solve this case: Does this 5-year-old have Lennox-Gastaut syndrome?

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