Improving Your Child's Quality of Life
John Mytinger, MD, is an attending child neurologist and epileptologist at Nationwide Children’s Hospital and Assistant Professor of Clinical Pediatrics and Neurology at The Ohio State University College of Medicine. Dr. Mytinger is a paid consultant of Eisai Inc.
People with Lennox-Gastaut syndrome (LGS) typically have frequent seizures, experience behavioral problems, and usually sleep poorly. While many families and doctors concentrate on seizure control, there are other factors to consider. Here are a few things that you might be able to control to improve your child’s quality of life.
Things like poor sleep or allergies could make anyone irritable or worsen one’s behavior. Having LGS only heightens the effect these triggers may have. But there are things you can do to lessen their impact.
Medication side effects
While antiseizure medications are necessary, they may also cause side effects. This is especially true when they are used with other medicines.
Every child is affected differently by medication. Some medications are more likely than others to cause behavioral problems,1 and many cause sleepiness.
Not only can sleepiness contribute to irritability and worsening behavior, it can also make seizures worse in people with LGS. If your child is less sleepy, he or she may experience fewer seizures.2 This in turn may improve your child’s quality of life. Remember, you should never change medications or doses without talking to your doctor. It could be dangerous.
Eliminate triggers that worsen behavior
There are numerous factors that may trigger a shift in behavior in people with LGS. Unfortunately, many families and doctors do not recognize these triggers. Yet they can have an enormous impact on the quality of life for the entire family.
The triggers mentioned below, like poor sleep or allergies, could make anyone irritable or worsen one’s mood or behavior. Having LGS only heightens the effect these triggers may have.
Here are some ways to lessen the impact of some behavioral triggers.
As noted earlier, better sleep can reduce the frequency of seizures. It can also reduce irritability and improve behavior.
One way to improve your child’s sleep is to establish a bedtime routine. This would include sticking to a consistent bedtime, avoiding such things as television, movies, computer time, or video games in the evening, and creating a calm environment suitable for sleep. If that doesn’t work, you should speak with your doctor about it. He or she may be able to suggest or prescribe sleep aids.
Keep to a routine
Individuals with LGS are often sensitive to changes in routine. These may arise from changing caregivers, such as teachers, sitters, and home health aides. Also, frequent changes in your child’s environment may be overly stimulating. Avoiding these changes when possible may improve your child’s behavior.
Constipation is common in individuals with LGS. The discomfort of constipation can trigger bad behavior. It can be difficult to detect, but hard small stools or even liquid stools around a stool ball within the rectum can be signs. Constipation is an often overlooked but readily treatable condition. Aiming for one soft stool daily, with diet modification or medication, may help.
Discomfort from environmental allergies is another overlooked but readily treatable trigger of irritability and worsening behavior. Signs for environmental allergies could include dark circles under the eyes (“allergic shiners”) or a continuous runny nose.
As you see, there is a lot a parent or caregiver can do to lessen the impact of triggers. Most of these suggestions do not require any medication or prescription treatments. As always, it is best to discuss these with your doctor. He or she can help you put a plan in place that may lessen the impact of your child’s seizures.