Lennox-Gastaut syndrome (LGS) is without a doubt the most daunting experience I’ve ever faced. Time and time again, the seizures outsmart us, leaving us scrambling to find the next solution to provide the best possible quality of life for our son.
Although our efforts have taken a physical and emotional toll, I must appreciate a few things we’ve figured out. After five years with Brian’s epilepsy, following is a list we’ve compiled of must-haves that help get us through each day.
Brian gets lots of comments about his hockey helmet, especially lately, during this time of social distancing and mask-wearing. People say, “I wish I had thought of that!” as Brian smiles through his protective face shield. What they often don’t know is that his helmet is primarily used for his epilepsy, not as a COVID-19 deterrent.
After looking through many options for medical helmets online, we opted for a legitimate hockey helmet. We figured if it could protect against falling on ice at high rates of speed, then it could help our boy if he fell to the floor during a seizure.
Since the addition of his full face shield and chin guard, Brian has been injury-free. We have Brian wear his helmet every day, so it’s no wonder it’s at the top of our list.
The constant epileptic activity in Brian’s brain causes him to seek a stimulatory outlet by chewing. It is his go-to form of stimming, and he does it so frequently that he has holes in many of his old shirts. We’ve tried different forms of “chewelry,” but many are no match for his level of chewing, and he prefers to chew on cloth anyway.
To protect his shirts and allow him to chew, we started having him wear bandanas over his shirts. They’re safe, reusable, and can be coordinated with his outfits. Mom-approved!
Brian is a man of comfort and ingenuity. Our little beach bum loves to be barefoot and can find his way out of almost anything.
When we started to get notes sent home about him frequently removing his shoes at school, we had to ditch the regular, cutesie light-up shoes and replace them with something harder to pull off. These new shoes would have to pass the “thumb test,” as Brian is able to remove his shoes with just a flick of his thumb.
The only kind of shoes to pass the test were a pair of black high tops. We also noticed that they provide Brian with a little more support for his clumsy gait. Brian is now on his fifth pair of high-tops, and they still prove to be thumb-proof. Most come with laces, but high tops with velcro straps are a bonus.
Shorts with elastic waists
As many LGS caregivers know, supporting your little one with toileting is a daily occurrence that can be physically exerting. Whether they’re able to sit on the potty or not, taking the time to unbutton and unzip their shorts is not time-efficient or practical. This is why we only buy shorts with elastic waists. We appreciate the ease and swiftness of being able to quickly pull his shorts up or down when we take him to the potty.
Since he is a man of comfort, comfy shorts are a win-win.
Yep, I saved the best and most essential for last. As an LGS caregiver, no matter what you think you may have figured out, the LGS keeps swinging. LGS does not acknowledge our lists, calendars, efforts, or well-being. LGS waits for nothing and does not care if you’re ready. LGS shows no mercy.
But even when you have nothing left, you can still have the courage to keep going in the face of pain.
As a downtrodden LGS mom, I recently took to the Netflix show “Cobra Kai” because of the theme of showing no mercy. So often, LGS makes me want to hide and give up. In my weakest moments, I let LGS have its way with me.
Brian’s most recent medication issues have been particularly trying, especially after all the success we had seen over the summer. But, I kid you not, the words from John Kreese himself lit a fire in me that I think will resonate with many other LGS caregivers: “We do not train to be merciful here. Mercy is for the weak. Here, in the streets, in competition, a man confronts you, he is the enemy. An enemy deserves no mercy.”
LGS is the enemy and deserves no mercy. So keep giving it hell, you courageous LGS mommas.
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.