How LGS treatment adherence shapes your child’s long-term health
Fact-checked by Sticking to your child’s prescribed treatment plan is an important part of managing Lennox-Gastaut syndrome (LGS) and supporting your child’s overall health and development.
Because LGS is typically difficult to treat, your child is likely taking multiple different medications, and you may find that you’re struggling to maintain a daily treatment routine. It’s important to understand that this is completely normal, and there are some easy strategies to help you track doses and maintain good LGS treatment adherence. This can support the best possible long-term LGS outcomes for your child.
The link between consistent medication and seizure control
There is a close link between seizure control and adherence to treatment. Many anti-seizure medications need to stay at a steady level in the bloodstream to help control seizures. This relies on regularly taking the medication as prescribed.
Missed or significantly delayed doses can cause medication levels to drop too low, leaving your child vulnerable to breakthrough seizures, including seizures that happen more often than normal, are more intense than usual, or become prolonged and require emergency medical care.
Missing a single dose once in a while may not always cause seizures, but any disruption to treatment can increase the risk. Uncontrolled or prolonged seizures, in turn, can increase the risk of serious, potentially life-threatening complications.
Inconsistent medication use can also make it harder for your child’s doctor to tell if the current treatment plan is working the way it should and may lead to unnecessary adjustments.
How adherence impacts long-term cognitive development
LGS belongs to a group of rare and severe epilepsies known as developmental and epileptic encephalopathies. In these disorders, frequent seizures and abnormal brain activity, starting early in life, can contribute to a range of cognitive and developmental issues.
Medication consistency in LGS may help reduce breakthrough seizures and support better seizure control, which may help protect development and daily function as much as possible.
Anti-seizure medications do not guarantee normal cognitive development, but taking them as prescribed can help give your child the best opportunity to keep learning, retain skills, interact with others, and manage emotions and behavior over time.
Overcoming barriers to daily medication routines
Your child with LGS is likely taking multiple different medications, which can lead to complicated daily treatment schedules that are hard to keep track of, especially on top of your many other caregiving responsibilities.
A few obstacles you may face, and strategies to overcome them, include:
- Forgetting doses: Anchor medication administration to other consistent daily activities that are never skipped, such as eating breakfast or brushing teeth. Use alarms, pillboxes, or other tools to remind you it’s time to administer the medication.
- Running out of medication: Set a reminder for prescription refills, have them automatically refilled at the pharmacy, or have them mailed to your home to help avoid treatment gaps when medications run out. Keep a one-week emergency supply to use if there are insurance or pharmacy delays.
- Costs: Talk with your care team or a social worker about your insurance coverage for medications, the out-of-pocket costs, and any patient assistance programs. If your child’s medications are not affordable for you, ask about alternative options.
- Medication refusal: If your child refuses to take their medication, try talking with your care team about whether there are formulations that might be easier for your child to tolerate, for example, those that can be mixed with a palatable food.
If you find you’re still struggling to keep up, try asking your child’s doctor if there are any ways to simplify the routine without compromising safety or efficacy. Always ask a doctor what to do if a dose is missed or significantly delayed.
Tracking doses: Tools for busy caregivers
There are a few different strategies that can help you track daily medications and avoid missing or repeating a dose. These include:
- paper medication logs, daily checklists, or color-coded calendars
- digital tools, such as phone alarms and medication tracking apps
- daily pill organizers, some of which have built-in timers or alarms, kept safely out of children’s reach
Which tools are best depends entirely on your family and lifestyle. Your child’s care team can help you come up with a system that is most effective in your case.
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.
