What I Want Doctors to Know About My Son With a Rare Form of Epilepsy

Smiling boy in wheelchair enjoying time at park.My 21-year-old son Andrew is diagnosed with epilepsy. His epilepsy diagnosis is a rare one. Lennox Gastaut syndrome (LGS) affects only about 50,000 children and adults in the United States. One of the most difficult aspects of LGS is uncontrolled seizures. This is definitely the most difficult part for Andrew and our family. I’ve learned a great deal over the years from Andrew’s neurologists, and now as a seasoned mom to a son who requires constant care, I would like to share my perspective in return. I want to maintain the relationship with Andrew’s neurologist, and also continue our partnership in Andrew’s care.

First and foremost, please understand there is nothing I want more than for Andrew’s seizures to be controlled. That one thing is by far my greatest wish for him, and I cannot make that happen. That weighs on me every single day. I started like everyone else as a new mom, and was immediately thrust into a world involving constant medical care, difficult decisions, medicines, medical equipment, therapies, dietary issues, seizures and so much more. In those early days, I had to do my own research. I found the need to connect with other families facing the same circumstances.

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