For those living with seizures associated with Lennox-Gastaut syndrome (LGS), medications such as antiepileptic drugs (AEDs) can help reduce the number and severity of seizures. But complete freedom from seizures is extremely rare for those living with LGS.
Caring for someone living with LGS can be difficult. The challenges of LGS are many. But planning ahead may help prevent problems and ultimately make life easier. The LGS community has several suggestions for families who are living with LGS.
Taking steps for safety
While antiepileptic drugs (AEDs) can help reduce the number and severity of seizures, parents and caregivers can take additional steps to help ensure the safety of those with LGS.
Children and adults experiencing seizures can hurt themselves, so it’s important to try and prevent injuries. Keep sharp objects out of the environment — especially in the bedroom — as they could cause injury in the event of a seizure.
Protective helmets
Children and adults with LGS often wear safety helmets. Helmets can be purchased at medical supply companies, sporting goods stores, and in the rehabilitation department of some hospitals.1
The helmet should:
- Have a face guard1
- Have an adjustable chin strap1
- Be sturdy enough to last1
- Allow ventilation1
- Still be comfortable1
A helmet with better protection may be needed on a specific part of the head if they fall in generally the same direction during seizures.
Talk to your healthcare provider to learn of locally based companies and resources that offer custom-fitted helmets.
Home modifications
If your loved one uses a wheelchair, your home may need construction work to become accessible. Wheelchair accessibility may require widening doorways, rearranging furniture, and possibly remodeling certain rooms. Safety bars in the bathroom may be needed.2
Small changes to your home can make life easier and safer:
- Install tub rails or seats to help prevent falls in the shower.2
- Lower the temperature of your household's hot water to prevent burns.3
- Put an intercom in the bedroom to listen for changes that might signal your loved one is having a seizure.3 You may consider installing video monitors.
Support and available services
While it is helpful to find someone outside of your home who can watch your loved one — on a set schedule or for special times — it is useful to know someone who is familiar with their needs. There are also several professional services available. When getting medical assistance, it is a good idea to talk to your doctor or a social worker about programs designed to aid and support families of loved ones with special needs. For example, respite care is a service that provides temporary care to people with disabilities and illnesses. Visit our resource page of Helpful Links for more information.
Keeping a seizure diary
Only you can provide the vital, first-hand information best needed for treatment. You can help your healthcare provider help you by tracking seizures in a seizure diary. It is especially important to track responses when trying a new medication. A diary can help with decisions regarding treatment modifications. The more details you can provide, the better treatment can be tailored.
Keep track of:
- Date and time of seizures
- Seizure type
- Possible triggers
- Medication schedule
- Medication side effects
- Behavioral or mood changes
NEXT: LGS Treatment Options
| References: |
| 1 |
Loughlin J. Buying a helmet. Epilepsy.com. http://www.epilepsy.com/epilepsy/safety_helmet. September 26, 2003. Accessed March 28, 2011. |
| 2 |
Quality of life. LGS Foundation Web site. http://www.lgsfoundation.org/quality_of_life.html. Accessed March 28, 2011. |
| 3 |
Lennox-Gastaut syndrome. Epilepsy Foundation of Victoria, Australia Web site. http://www.nevdgp.org.au/info/epilepsyf/info/lennoxGastaut.html. Accessed March 28, 2011. |