How to Decide the Next Step?

How to Decide the Next Step?
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As I approach the reception desk, my heart is beating quickly. My forehead muscles are tense from the prolonged furrowing of eyebrows. People are crazy drivers, and any safe arrival to a distant destination should always be appreciated. I check in, stating the patient’s name: “Brian Solka.”

Growing up, my visions of fatherhood never included a medical catastrophe. At no point did I seek or receive any information, training, or exposure to daily seizures and their consequences. I am horrified. Encountering such a debilitating rare disease head-on without notice changes everything. All aspects of daily life are heavily impacted. The worst part is that there is no cure for Lennox-Gastaut syndrome (LGS).

All hopeful optimism aside, this is a problem without a known solution, a constant punishment without end. Barring a miracle, this is Brian’s reality, his only existence. Seizures are all he’s ever known, and I hope to God he isn’t suffering any more than he lets on.

After checking Brian in, my mind races. “What is the next step?” I think for a minute. We’ve tried several different neurologists, medications, and alternative treatments, and we’ve had mixed results. Most medications initially appear to have a positive effect on Brian’s seizures. It’s sort of a “honeymoon” period. We’ve had a few extensive honeymoon periods, and those have been some of the best of times.

Unfortunately, as with all honeymoons, the bliss is temporary, and we must return to reality. And the reality is that the seizures have always come back. The more medications we try unsuccessfully, the bleaker the outcome. With each new trial and error, the optimism correspondingly fades. How can anyone be hopeful when the future seems so certainly sad? I just wish I had gone to medical school and trained as a neurologist. I feel so helpless and inadequate when dealing with such medical complexity.

There is no clear procedure for treating LGS. There are dozens of anti-epileptic drugs on the market, as well as several alternative treatments. But none have proven to be a silver bullet for treating this horrible disease. The primary concern is to keep the LGS patient’s quality of life as pleasant as possible. Basically, this is decades-long hospice care. We will do what we must to give Brian the best existence possible.

Each meeting with neurology professionals has been very much appreciated. It takes a special kind of human being to willingly choose the study and treatment of the brain, the most important and least understood organ in the body. Such a great challenge can only be approached by the most competent of individuals. I continue to hope that many of the brain’s mysteries will continue to be answered for generations to come, but those answers can’t come soon enough.

As I discuss Brian’s disease progression with his neurologist, I struggle to make sure I remember all the topics I wanted to discuss. I want to make sure I don’t forget to ask about tweaking his medicine, or his declining speech. I also don’t want to forget to mention his recent pickiness with drinks, or his baby teeth falling out and being swallowed (presumably). Should I ask about his spine beginning to curve from prolonged sitting, or do I need another referral to yet another specialist?

Each visit is like a science experiment. We’re constantly tweaking and adjusting medications and doses, trying to find a perfect combination that can help. Some have been better, and some have been worse. There are surgical treatment options, but I haven’t yet made peace with the idea of cutting Brian’s brain in half. We haven’t tried all the currently available anti-epileptic drugs, but none have shown to be curative, and most come with significant side effect risks.

Without a previously established set of guidelines, most of the treatment decisions are left to the parents of LGS patients. We’re pretty much just throwing a bunch of stuff against the wall and seeing what sticks. So far, nothing has been very sticky. The pressure is daunting, and no one wants to make the wrong decisions. However, this is the only option we have. We can’t give up on our little warriors. And hopefully, we’ll get a miracle down the road. Until then, we just keep chugging forward.

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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.

Brian is a caregiver columnist along with his wife, Jendi, writing about life caring for their son, Little Brian. Little Brian is currently diagnosed with Lennox-Gastaut syndrome, which started as infantile spasms at 8 months of age in 2015. They live in the Tampa Bay area of Florida and love the sunshine. Although Lennox-Gastaut syndrome is devastating and without a cure, each day is a new day and should be cherished, no matter how difficult it may be.
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Brian is a caregiver columnist along with his wife, Jendi, writing about life caring for their son, Little Brian. Little Brian is currently diagnosed with Lennox-Gastaut syndrome, which started as infantile spasms at 8 months of age in 2015. They live in the Tampa Bay area of Florida and love the sunshine. Although Lennox-Gastaut syndrome is devastating and without a cure, each day is a new day and should be cherished, no matter how difficult it may be.
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