Lennox Gastaut Syndrome

I have to admit I had a hard time putting this post together. This sounds like a particularly complicated and devastating disorder - one that saps vitality from children who may otherwise seem healthy and whole. I start most of these posts from very little personal knowledge, so they require a fair amount of research. I need to be as accurate as possible without copying verbatim from the resources I've looked at, and I try to be sensitive to parents, caregivers and individuals who may be affected by the conditions I'm learning about. All of that put together meant this post was tough and therefore late, but I hope will still be interesting and useful to you. 

I had never heard of Lennox Gastaut Syndrome (LGS) until I saw another special needs parent's post about her child on a discussion board I belong to. As usual I was curious to know what is involved with this condition, and started my research. There is a lot to learn. LGS is a form of pediatric-onset epilepsy that can be quite severe. Fortunately it is fairly rare, occurring in 1-4% of pediatric epilepsy patients. One devastating effect of this disorder is that it usually begins between the ages of 2-6 years and the child may be typically developing prior to having their first seizure. With each seizure the child may regress, gradually losing skills. Even cognitive function may be affected. LGS generally causes various types of seizures (the seizure type may change as the child gets older) and often the seizures cannot be controlled with medication.

Besides the obvious impact of epileptic seizures, individuals with LGS often exhibit behavioral challenges, personality disturbances, mood swings, poor social skills, attention seeking behavior, and challenges understanding information. These changes may be brought on as side-effects of the seizures or of the medications used to control seizures.

Sometimes there is no known root cause of LGS, but often there is evidence of brain injury due to lack of oxygen during pregnancy or birth, an infection (like meningitis), or congenital brain malformation.

Because LGS seizures are often not controlled by medications, alternative treatments are often used. Among these treatment options are:

• ketogenic diet -  a high fat, low carbohydrate diet used to force the body to burn more fat than sugar. The diet is known to help reduce seizure rates in children with some forms of epilepsy. There is a modified Atkins diet being studied for use in adults.
• vagus nerve stimulation therapy - this involves implanting a device under the arm or in the chest that sends electrical impulses to the vagus nerve, which in turn helps the brain regulate electrical signals to help control seizures. The device can be activated with a magnet to prevent or control a seizure during the event. This sounds to me like a pacemaker for the brain.
• surgery - there are several surgical options, but these are considered as a last resort, usually, and will only be attempted if critical brain functions will not be affected.

There are some things you can do to help advocate for individuals with LGS and other forms of epilepsy.

• Learn more and help spread the word. There is a wealth of information available at the LGS Foundation.
• The LGS Foundation accepts donations to help fund research and to help support families affected by LGS.
• The 5th Annual Walk for Epilepsy will be held on March 27, 2011 in Washington, D.C. Click here for more details.
• Even if you can't make it to Washington D.C. on March 26 (the day before the walk), consider wearing purple and if someone asks you why tell them it is to raise awareness for epilepsy.

For more information check out these sites:

• The National Institute of Neurological Disorders and Stroke
• epilepsy.com