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An LGS Diagnosis and a Caregiver Mom’s First Ride into the Unknown

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An LGS Diagnosis and a Caregiver Mom’s First Ride into the Unknown
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It’s July, and for a teacher like me, it’s the peak of summer training. I’m training to prepare for a new grade level I will begin teaching in the fall.

Normally, I would attend in-person training, but being in the middle of a global pandemic, I am instead attending the training virtually from my laptop. During the summer, I prefer to be home anyway, so this isn’t so bad.

No venturing out into the Florida heat or storms. No rush for a drive-thru coffee and showing up late, anyway. No wondering if my 5-year-old son, diagnosed with Lennox-Gastaut syndrome (LGS), will stay safe with the babysitter. No need to worry that he’ll have a drop seizure into a hard piece of furniture and scar his face, again.

Thank goodness!

Instead, I’m wearing my pajamas, sipping a ridiculously hot coffee (just right) at my dining room table and watching the presentation. My son is sitting quietly in his wheelchair next to me. He’s quiet because he is happily reaching for his cheese crackers from the table and subsequently stuffing his face. The boy loves to eat!

Watching him, I can’t help but feel total bliss. Only a few months ago, he could barely hold his head up, let alone chew and swallow solid food. I snap a few photos of him to hold onto the moment forever. With Lennox-Gastaut syndrome, you never know what the next day will bring.

By the time I shift my attention back to the presentation, I can’t help but notice the posted question: “How can I plan for the unknown?” Good question. It’s a hot topic in education right now, especially for districts that will be reopening in the fall.

Despite the growing apprehension leading into this new school year, and the myriad unanswered questions, I feel an odd sense of calm. It’s a familiar feeling, because it’s not the first time I’ve taken a ride on The Unknown. My husband, Brian, and I have been on this ride since July 2015, when our then 8-month-old son was diagnosed with infantile spasms, a rare form of epilepsy.

In the days leading up to that diagnosis, my husband and I had been journaling about our son’s symptoms. We noted the quick jerking of his arms, the eyes shifting upward, the head nods, his irritability, etc. Like any mother infected with the idea that something could be wrong with their child, I stayed up late Googling his symptoms.

Dozens of clicks led me to articles and videos of infantile spasms, including “Little Seizures, BIG Consequences,” as one study was titled.


I remember thinking there was no way it could be what our son had, because epilepsy doesn’t run in either side of the family. However, my stomach dropped when I watched a video of a baby having these types of seizures. It looked exactly like what my son was experiencing.

Just three days later, my son was waiting to be hooked up to have his first EEG. I tried to convince myself it would be nothing serious, maybe just benign myoclonic jerks like the pediatrician suggested. The EEG technician, experienced with anxious moms like myself, kept the atmosphere lighthearted as he applied the nodes to my son’s head.

Still, looking at his tiny body hooked up to the tangle of multicolored nodes, I couldn’t escape the feeling of unease. To make matters worse, the EEG technician’s face fell almost immediately as the EEG began. He informed me that he was going to get the neurologist, and he hurried out of the room.

Wait, come back!

Those few minutes alone with my thoughts were excruciating. It’s like the moment you approach a big drop in a roller coaster, eyes glued shut, teeth clenched, and white-knuckling the bar in front of you because you hate this part, and you hate roller coasters. I do, anyway.

At that moment my whole body tensed up because I knew what the neurologist would say, but it would tell me absolutely nothing about what to expect for our future. Tears were already spilling down my face as he delivered my son’s diagnosis: infantile spasms.

Our son was admitted immediately. This ride was dropping way too fast. I never would have guessed that this would be the beginning of a journey that eventually would lead to another unknown: LGS.

So, how do you plan for the unknown? You don’t. You can hold on real tight, shut your eyes, and scream profanities the whole way down. Or, after a few rides on The Unknown, you can slowly start to raise your hands in the air and take what’s to come.

Buckle up!


Note: Lennox-Gastaut Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lennox-Gastaut Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Lennox-Gastaut syndrome.

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  1. ted ciske says:

    Very moving story and more amazing positive attitude while dealing with the diagnosis. Your son is so lucky to have 2 parents like you both. Keep up the great love and patience you have for this journey…

  2. Tina Sharpe says:

    My adopted daughter also has LGS, when she came to me at 4 months she was already on Keppra and I did t notice any types of seizures till she turned two. I kept telling the Dr. she was having something that resembles IS but they assured me it couldn’t be. I finally caught one on a video and they sent her in for a 34 hour EEG and diagnosed her with epileptic spasms (infantile spasms). Shortly later she was also given the LGS diagnoses. I cherish every moment I have with her and pray that we can eventually get her seizures under control. Sending prayers to you and your son.

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