Caring for a child with Lennox-Gastaut syndrome - it takes a village
Having a reliable support system is important to all of us. It is particularly important to the families of those living with Lennox-Gastaut syndrome (LGS), a severe and rare form of epilepsy that affects an estimated one in 50,000 to one in 100,000 children and up to 4 percent of children with epilepsy. Many families may be struggling with the demands of caring for a loved one with this condition – a task that may require around-the-clock attention and support.
LGS is characterized by three key characteristics:
* a clinical triad of a slow spike-and-wave pattern on an EEG,
* impairment of cognitive function, and
* multiple types of seizures, including tonic (muscle stiffening), atypical absence (staring) and atonic (loss of muscle tone) seizures being the most common.
Despite therapeutic advances, LGS is challenging to control as many children require around-the-clock care and constant support from a variety of health care professionals. This can be taxing on parents and families and finding the right combination of health professionals to provide optimal care for a loved one with LGS can seem like an overwhelming task.
“There is no question that caring for a child with LGS can present many challenges and it’s highly recommended that for optimal care, a child’s health care team be integrated from the start,” says Patricia A. Gibson, M.S.S.W., director of the Epilepsy Information Service at Wake Forest Medical Center in Winston-Salem, N.C. “Support for these families continues to be more readily available as we learn more and more about this unique condition.”
A health care team will likely consist of multiple doctors including, but not limited to, a pediatrician, neurologist, neurosurgeon, physical, occupational and speech therapists as well as physicians for dental and eye care. The best approach for each child is highly individualized and is constantly evolving.
Tips for identifying your LGS support team from Patricia Gibson
1. Find a trusted resource in your local area
Your pediatrician or neurologist will often know about additional resources in your area. Seeking advice from other parents of children with developmental disabilities may also help you uncover local resources.
2. Ask the right questions
When identifying potential members of your care team, don’t hesitate to ask questions to ensure they meet your needs. For example, how many other children with LGS or other developmental disorders have you cared for? Ideally, your care team will have experience with seizure disorders.
3. Look for support close to home
Your family and social network are also an important part of your team. While the challenges associated with LGS can put a strain on your family, it’s increasingly important to band together. Talk to those you trust about your issues and concerns. Take your friends up on their offers to babysit. Let them help you seek out resources.
4. Be patient
As you build your team of experts, try to practice patience and remember that your team will be a “work in progress,” adjusting as the needs of your child and family continue to change over time.
Additional support and information about LGS, including information on treatment, support groups and an educational video series, “Navigating the Storm,” can also be found by visiting LivingWithLGS.com.