Living with LGS: Andrea’s Story

Hi, I’m Alejandra, Andrea’s mother, my beautiful angel who had a normal childhood until she was seven years old. I still remember waking up and hearing the sound that my little Andrea emitted, I thought she was drowning when I saw her legs, hands, and purple mouth, I feared the worst while she revived her.

I thanked God that she woke up in the emergency room. He had been able to save her; however, everything was normal, and nothing I explained was taken into account, it seemed like a great invention of a hysterical mother. Maternal intuition exists, it was clear to me.

We go through cardiology normally. The cardiologist explained to me that a complete analysis was necessary. Thanks to this, he sent me to a neurologist, who, after going through an electroencephalogram and a CT scan, gave us the first diagnosis, which was epilepsy, but there was something I didn’t like, something that had me in doubt and caused me anguish in my heart. I felt incomplete, and this encouraged me to be brave and go in search of other diagnoses, and one of them changed everything.

The presence of frequent spike paroxysms, high voltage slow wave in the left region (temporo-occipital) persistent in the sleep phase, cortical blindness of the left eye, and Gastaut-type epilepsy, was the definitive diagnosis, which gave me some peace of mind. , since, in the case of an accurate diagnosis, however, it created great fear in me, due to my ignorance of medical terminology.

“What is this?” I wondered and began the search, about how little is known so far.

We are from Veracruz Mexico, and even neurologists are not specialized in this disease, about which there is a lot of ignorance.

During our time at the psychiatrist and after her electroencephalogram, it was found that she had Organized Anxiety Disorder, Mental and behavioral disorder secondary to brain injury.

The being of her changed so much about her, she was such a healthy, active and awake child, with so many new things to experience, and now, although she hasn’t lost the spark of her, she is limited. Every day she teaches me what bravery is.

I invite you to continue against the misinformation that exists, about Lennox Gastout Syndrome.

Thanks to the foundation, for allowing me to tell my story and see the struggle of other mothers and fathers, who contribute to the creation of this beautiful community, whose objective is to inform and help us. I hope to learn many new things that can help our warrior Andrea León.