In the spirit of Halloween and the constant uncertainties in our life, I had to revisit the first risk I took for my boy, Brian.
I was in the final weeks of my pregnancy, my belly was impossibly huge, and we knew nothing of Lennox-Gastaut syndrome (LGS). Everything was going smoothly. I just faced the decision of whether to continue working and spend my entire paycheck on college and daycare or resign and transition to being a stay-at-home mom.
I went for the risk, favoring the benefit of being able to stay at home with my son in his early years, and put the rest of my time and dedication into finishing school. Oct. 31, 2014, was my last day after nearly five years at my first full-time job.
Little did I know that this risk I took before he was born would set me up to be able to meet the impending demands of LGS. As a stay-at-home mom, I was able to drive Brian across the state for doctors’ appointments, sleep with him overnight for 24-hour electroencephalograms, and take him to therapy sessions three times a week. Dad could work without worrying about how Brian was getting his care and who was tending to him.
I was thankful for the timing, because I would enter my first full-time internship as he was beginning preschool. It seemed as though we had all the logistics figured out until LGS showed us just how often we would walk the plank.
Every change we have to make to care for our son feels like a risk. Not only because LGS is still uncharted territory for us but also because whatever decision we make has significant impacts on Brian, and sometimes, on other members of our family.
I can’t tell you how many times we’ve had to take risks to get him the treatment and medical care we believed he needed. Whether it’s about which doctor we take him to or which anti-epileptic drug (AED) we try next, it feels like we’re in a constant state of figuring out what to do.
Naturally, as the options for treatments dwindle, the risk of physical side effects increases for our son. The AEDs we tried in the beginning with the least amount of side effects weren’t enough. Medical cannabis alone was not enough. The ketogenic diet was not enough. And now, the triad of medications that gave us a few harmonious months over the summer has become less effective.
Dad and I ponder the remaining options, and each feels like a risk. We can try yet another well-known AED that could possibly cause a fatal rash. There are options emerging from trials that may be promising. But what if they don’t work? And even if they work for a few months, what happens when they stop working?
Down the road, we know one of the last options is a corpus callosotomy, a type of brain surgery that prevents epileptic activity from crossing from one side of the brain to the other. Other LGS families I follow on social media have said it wound up being promising for their little ones.
I try to be optimistic. But if you had told me on Oct. 31, 2014, that I would have to even consider putting my son through a brain surgery to prevent debilitating seizures, that would have broken me. It’s not fair that this is a risk I have to consider. Yet Dad and I have already talked at length about it and decided that if we ever get to that point, we will try to align it with my summer vacation so I can be home with Brian through his recovery and the inevitable therapies he will need.
Regardless of how scary it may be, I want to know that we tried everything for Brian because he deserves it. Giving up is not allowed, no matter how selfish I want to be and no matter how scary it is.
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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