You’re Not Alone! Here are Some Lennox-Gastaut Syndrome Resources

There is a man in my church whose 12 year old daughter has Lennox-Gastaut syndrome (LGS).

If you’re not familiar with this particular form of epilepsy, let me just say I wouldn’t wish it on anyone, least of all a child. LGS causes moderate to severe learning disabilities, and triggers many different types of seizures, including tonic-clonic–or drop seizures.

I pictured this little girl’s brain swirling with constant electrical storms over which she had no control.

The little girl has finally started accompanying her dad to services, but it wasn’t always possible.

She would have literally hundreds of seizures every day, and no medication seemed to touch them. Her world became a giant pillow fort as her dad sought to protect her from injuring herself while having a drop seizure.

Frequent hospitalizations were also a part of her life–until her neurologist came upon a combination treatment that “flipped” some kind of switch in her brain. For the first time, she began to have relief.

The seizures didn’t go away entirely, but they are fewer and less severe. She has even begun attending a special needs school for the first time in her life.

What causes LGS? Lack of oxygen to the brain is one cause, brain trauma or infection are other causes, but in up to 30% of diagnosed cases, the cause is unknown.

This type of epilepsy is also notoriously hard to treat.

So, where can you go for help if your child has LGS? The Lennox-Gastaut Foundation is a wonderful place to start.

Their Resources page lists online support groups, newsletters, advice on finding a neurologist, and helpful links. You’re not alone – you just have to reach out!


Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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