What treatment options are available for people with LGS?
Treatment options for patients with Lennox-Gastaut Syndrome consists of:
- Seizure medications
- Seizure medications specific for people with LGS have been tested in recent years. Other seizure medications may also work with this condition. The choice of treatment will also consider the person's age and other associated conditions.
- Sedating drugs should be avoided, since inactivity and drowsiness can precipitate seizures in LGS.It helps to keep a child in a stimulating environment.
- Some children improve with a reduction in total seizure medications, even though they may not have complete seizure control.
- Dietary therapy
- Vagus nerve stimulation
- Certain types of brain surgery in select situations
- Plans to prevent or manage seizure emergencies, routine medical illnesses, and the use of other medications that could potentially worsen seizure control.
What are some tips for managing medical illnesses?
When patients with LGS experience medical illness (such as a common cold or viral gastroenteritis) it is critically important they continue to take their seizure medication on their regular schedule.
- If they are vomiting and are unable to keep their medication down, they may need to be admitted to the hospital for intravenous medication and fluids.
- Have an emergency plan to temporarily treat seizures when someone can't take their usual medicines by mouth.
- Aggressive treatment of their medical illness and vomiting is needed to prevent a potential seizure emergency such as status epilepticus.
- If they have a cold, some antihistamines (i.e., Benadryl or chlorpheniramine) may lower the seizure threshold resulting in more seizures. Alternative medications such as Claritin or Allegra or nasal preparations to treat seasonal allergies are preferable.
- Some antibiotics can worsen seizures too. If an antibiotic is needed, ask the medical doctor to contact your neurologist before starting an antibiotic.
Why are seizure rescue plans needed?
Every patient with Lennox-Gastaut Syndrome should have a plan developed for what to do if they miss a dose of medication and for treatment of seizure emergencies. These plans can help everyone learn what seizure emergencies are and how to treat them if or when they occur. There are several treatments that can be used at home or in the community to prevent or stop an emergency situation.
- The most common seizure rescue medication is a form of benzodiazepine. This could include lorazepam, diazepam, rectal diazepam (Diastat AcuDial) or midazolam.
- If a patient has an implanted vagus nerve stimulator, the magnet would also be considered a rescue treatment.
- Seizure Response Plans (also called rescue plans or seizure action plans) should be tailored to the patient, with clear guidelines as to when to administer the medication or magnet, when to repeat the dose (if necessary) and when to go to the emergency department for further care.
- Having a plan in place will allow the best possible treatment of a seizure emergency and allow the family and the patient to have the best possible quality of life. Stopping frequent emergencies allows the patient to function better and may decrease further medical problems or complications.
Tell me more about treatments
Patients with Lennox-Gastaut Syndrome typically have seizures that are resistant to treatment. As such, it is unlikely that the child will be placed on a single medication or treatment and have all their seizures controlled.
- Families should be aware that there will likely be changes in the child’s treatment, depending on the response to therapy, other treatments that the child is initially on, and the side effects that the child may experience.
- Unfortunately, there are no studies that can tell the best sequence of treatments in a child with Lennox-Gastaut Syndrome or even which combinations of therapy are most effective.
- Treatment can be complicated because some anti-epileptic drugs that may help a certain seizure type may worsen other seizure types. At times, a new seizure type may be seen on certain medicines.
- Don't settle for having frequent seizures! Work together with the epilepsy/neurology team to aggressively treat the atonic and generalized tonic-clonic seizures. These are the more disabling seizures and can cause many injuries. While the goal is to reduce the frequency of all seizure types, reducing the atonic and tonic clonic seizures should be a priority.