Hi. Im so sorry to hear about your grandchild. My name is Vinay. Let me see if I can help you understand what is going on here.
Lennox Gastaut Syndrome (LGS) is a developmental problem with the CNS. Most of the time we don't really know what causes it. But many a time it is associated with certain kinds of Brain malformations that developed from birth (we call them cortical dysplasias), hypoxic injury at birth (not enough
oxygen to the brain at birth), infections, trauma and a rare disease called
Tuberous Sclerosis.
Any case of Symptomatic LGS that I have come across has come into the really "tough to treat" category. The seizures are resistant to Anti Epileptic drugs and alot of the time we end up having to give a lot of
steroid medications (like
prednisone) to control the seizures. Unfortunately it takes a lot of 'Trial & Error' to figure out that perfect combination of drugs that controls the symptoms and most of the time the patient and me have to settle for something that is far short of perfect control of the seizures.
Given that these seizures are a part of life for these children.. the statistics on mortality are staggering.. most of them die of accidents... secondary to the seizures..
That makes me believe that the family has to adopt a kind of "ready for anything" stance. You have to evaluate the home and make sure that if she DOES have an witnessed seizure.. there is nothing around that she can hurt herself on and she will be found relatively quickly.. The School and School Bus environments are important to look into as well. The more accidents you can prevent, then better her overall prognosis.
All her caregivers and all regular visitors to the home have to know how to deal with a witnessed seizure and should know basic
first aid.
I don't want to address the different medications she is on for this problem as that is an issue that can ONLY be dealt with on the ground by her
Neurologist with an ability to examine her and look at her lab reports. Suffice it to say. I expect that these meds will be changing on a regular basis until the seizures are controlled.
I do so hope this information helps. Feel free to contact me through HCM if you think I can be of further service