When to change your child’s Lennox-Gastaut therapy
Fact-checked by Lennox-Gastaut syndrome (LGS) is a drug-resistant epilepsy that evolves over time, so it’s likely that at some point, your child’s treatment plan will require some changes.
There are two main reasons why LGS medications may need to be adjusted: They’re no longer adequately controlling seizures, or they’re causing intolerable side effects.
It’s important to stay in routine contact with your child’s neurologist, and to let the care team know any time there’s a change in seizure patterns or side effects. Your child’s doctors will know best when to change LGS therapy, and will help develop a plan to do so safely.
Recognizing breakthrough seizures and patterns
It is unlikely that someone with LGS will become entirely seizure-free — your loved one will probably continue to experience seizures even with effective therapies. The goal of LGS treatment is to minimize dangerous or disruptive seizures and improve your child’s quality of life.
It’s important to remember that not every seizure is a sign that your child’s medication is not working. What you need to look out for are breakthrough seizures, or an unexpected increase in seizure frequency or severity that differs from the pattern you’ve come to expect.
If your child previously had a relatively stable and predictable seizure pattern on prescribed medications, but is suddenly experiencing longer, more frequent, or more severe seizures — or new seizure types — it could be a sign that the epilepsy is evolving and the current regimen is losing effectiveness.
The best way to monitor this is to keep a daily seizure log that records when, how many, and which specific types of seizures your child is experiencing.
While breakthrough seizures don’t always mean medications are failing — these episodes can be triggered by missed medication doses, sleep deprivation, illness, or other factors — it is important to let the care team know any time there is a change. They’ll be able to help identify the underlying cause and determine if medication adjustments are needed.
Evaluating the balance of side effects vs. benefits
Another potential reason to switch therapies is if your child starts experiencing intolerable side effects. Every medication or combination of medications can cause different side effects and come with different safety risks.
Deciding whether these are worth it is an individualized decision that requires balancing the risk of side effects with the therapy’s potential benefits for seizure control. Your child’s neurologist can help you make these decisions and provide you with a list of side effects that should be reported right away.
The ‘rule of two’ for failed epilepsy medications
According to guidelines from the International League Against Epilepsy, epilepsy is considered drug-resistant when two appropriately chosen and well-tolerated standard medication regimens have failed to stop seizures.
By definition, LGS is characterized by multiple types of drug-resistant seizures, so your child will likely meet this criterion relatively quickly.
When this happens, the next step is to work with your neurologist to pivot to advanced LGS medications and/or nondrug interventions, such as diets or neurostimulation devices, to achieve maximum seizure control.
How to initiate a transition plan with your neurologist
To facilitate the process of switching LGS treatments, bring your seizure log to each appointment with your child’s physician, along with any videos of the seizures you may have recorded. This will help the doctor understand how the seizures have evolved.
Make sure you’re also equipped with a list of medications, their doses, and any side effects your child has experienced from them.
Using this information, you’ll work with the care team to decide which treatment changes are needed, such as adding, removing, or changing medication doses. You should then draft a written plan for the transition.
Preparing for the medication crossover period
The process of switching medications usually involves a period during which the dose of the failed LGS medication is gradually decreased, while the new medicine is gradually increased.
There is no guarantee of how your child will respond to the change. During the transition, your child may be more susceptible to increases in seizure frequency and side effects. It’s important to work with the care team to develop a crossover safety plan that includes:
- A written treatment plan: Keep a detailed protocol of which medication changes should be made — and when — to avoid incorrect dosing.
- Rescue treatment protocol: Stay stocked up on emergency rescue medications, and discuss with a doctor exactly when they should be used.
- Tracking: Continue to keep a seizure diary to track your child’s seizures every day, as well as a side effect log of any new or worsening side effects that occur during the transition.
The most critical aspect of navigating treatment changes with LGS is consistent and clear communication with your child’s neurology team. This will ensure the transition is as safe and effective as possible.
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.
