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Living With Lennox-Gastaut Syndrome (LGS): Appreciating Every Moment Together

Rachel’s Story

Our family drove forty miles north today to Hanover, Pennsylvania. A little over a year ago, my husband Dave found an old timey pinball spot he wanted to take us to. The arcade reminded my husband of the fun he had as a kid playing pinball and video game machines of an older generation, and Dave wanted our kids to experience the same fun. It’s not uncommon for our family of six to take a short drive for small adventures. It’s kind of our thing. My husband and I love spending time with our four kids, and we’re fortunate that at the ages of 21, 16, 14, and 11 that our kids still like to spend time with us.

Our outings are meaningful to each of us in our own ways. My husband likes to drive. I like the change of scenery. Our girls are up for anything new. Our son Andrew loves the car ride, and even more he loves eating fast food. Andrew is 21. When he was a year old, he was diagnosed with infantile spasms (a rare form of epilepsy), cerebral palsy, and cortical visual impairment. Andrew’s infantile spasms diagnosis changed over the years to what he is diagnosed with now, Lennox Gastaut Syndrome (LGS). With LGS, Andrew seizes every single day. Andrew cannot walk or talk and relies on my husband and I for most everything. Despite all of this, Andrew’s special needs have not gotten in the way of our family’s activity. We take pride in this.

Stopping for lunch

On our way to the arcade, we stopped first at a fast food restaurant to get something to eat. I went into the restaurant to order and to pick up the food. I returned to the car to find Andrew just had a seizure. He was pale and looked very sleepy. Since these are common for Andrew, it’s unfortunately a part of our regular days. His seizures last about a minute or so, and Andrew is then able to continue on with what he was doing. I decided to feed Andrew anyway, even though he had not recovered yet. He was so excited for the food the last half hour before our stop. When Andrew hears Dave and I talking about lunch plans, he immediately starts vocalizing his approval. He was hungry, and I love that he can tell us that. I was hoping the food Andrew was so eager about would bring him back to himself. I hated that his excitement was just stolen from him.

From the very first moment I put Andrew’s food into his mouth, I could tell the seizure had impaired his ability to eat, but I continued to feed him, still hoping it would help. Andrew began to struggle. I had gone too far, and my mind started racing. Why did I do that? I should’ve wait until he’s rested a bit. The carefree, fun vibe in our van ended. Dave began panicking, too, and the stress in his voice was visceral. “What should I do? Pull over!? Sit him more upright! Why did you feed him after a seizure?!” He was trying to help, but also knew he was helpless at the steering wheel. I saw and felt the dread in my girls’ eyes. This wasn’t the first time one of our trips had been turned upside down. Frightened and stressed, panic mode stepped in. Andrew was struggling to breathe with salvia, mucous, and tears flowing down his face. He began coughing loudly, with strength and force. Andrew was choking.

While this wasn’t the first time we had seen Andrew struggle during a meal, it had never been life threatening. Difficulty with eating started to become a normal occurrence and, as his strength in eating deteriorated, it brought up serious concerns: 
Was Andrew getting sick? Does Andrew now have reflux? Is his severe scoliosis now affecting his ability to eat? What’s happening with Andrew? Is this the day we lose Andrew? These questions are always hovering. I hate to admit it, but these questions are a heavy weight I always carry, despite any other impression I try to put forth.

Eventually, Andrew was able to clear the food and the saliva. Our road trip continued on. I insisted Dave take the girls into the arcade so that trip could be successful on at least some level and not end in such a terrible way. Andrew and I sat in the van. He was exhausted and now asleep. I sat next to Andrew in the backseat with tears in my eyes, and the realization hit me like a ton of bricks. For most, we don’t know what the next day will bring. For my son, every single hour can bring a medical episode that could end his life. Just like that.

This is why we road trip, why we carry on and why we treasure each moment together as a family.

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