Navigating a Lifetime of Diagnoses: The Side Effects of Anti-Seizure Medication

Wrapping my head around the continued process of one diagnosis after another in Michael’s lifetime has been more than a journey less traveled; it’s been a marathon of emotional highs and lows. Michael, my son, is now 40 years old. His life has been a testament to resilience, navigating through the relentless waves of medical challenges that seem to ebb and flow with each passing year.

Michael’s early years were marked by intractable seizures, which eventually led us to the diagnosis of Syngap1 in 2019. Syngap1 is a rare genetic condition that affects the central nervous system, presenting with a constellation of symptoms including intellectual disability, epilepsy, autism, sensory processing issues, hypotonia, and unstable gait. It also brings challenges like language delays, emotional and behavioral difficulties, sleep problems, and motor delays. For those who haven’t encountered this condition, it’s a whirlwind of complexities that can be difficult to grasp fully. But for me, finding out about Syngap1 was a bittersweet revelation—it was a crucial piece of the puzzle, and suddenly, I found my people.

Fast forward to today, Michael’s journey continues with the familiar ups and downs of managing his condition. His seizures persist, requiring ongoing medication adjustments, dietary changes, and even a procedure for replacing the battery in his Vagus Nerve Stimulator. Despite our best efforts, a recent incident brought new challenges. While walking across the living room, Michael experienced a drop attack, causing him to fall heavily and breaking his left leg in three places. The severity of the fractures necessitated orthopedic surgery to repair the damage with a rod and other hardware.

During his hospital stay, a hospitalist inquired about Michael’s medical history, particularly any family history of osteoporosis. He was concerned about the complexity of Michael’s leg break at such a young age—40 years old. This prompted a discussion about the long-term effects of antiseizure medications. The hospitalist asked if Michael had ever taken medications like Tegretol or Depakote. I recalled that he had, though I couldn’t specify the exact ages.

It turns out that some antiseizure medications, especially older ones, are linked to an increased risk of osteoporosis and bone density loss. Medications like Phenytoin (Dilantin), Carbamazepine (Tegretol), Primidone (Mysoline), Valproic acid (Depakote), and Phenobarbital are known culprits. While the exact reasons are unclear, it’s suggested that these medications might lead to increased turnover of vitamin D and impaired calcium absorption. Michael has always struggled with low Vitamin D levels and takes 5000 IU daily, but the cumulative effect of these medications over the years has evidently taken a toll on his bone density.[1]

As a parent, I thought the days of navigating Michael’s diagnoses were behind us, but it seems that this journey is far from over. I find myself trying to adapt Michael’s environment to reduce the risk of falls, exploring every avenue to manage his condition better. The reality that medications prescribed in the past, which once seemed like small tablets of hope, have now led to significant side effects is both disheartening and eye-opening.

If I could go back and offer advice to myself or other parents in similar situations, I would certainly advocate for a more thorough exploration of the side effects of medications. In today’s world, with the internet at our fingertips, there’s a wealth of information available. I would have used it more proactively, perhaps with a stronger advocate’s voice and a keen eye on diet and supplements.

For young families navigating similar challenges, my message is clear: be vigilant about understanding the side effects of medications. The Canadian Society of Pharmacology and Therapeutics notes that while the reasons for secondary effects like bone loss are not fully understood, awareness and proactive management can make a significant difference.[2]

Michael’s journey is ongoing, and though it’s filled with unexpected turns, it’s also a testament to his strength and our unwavering commitment to finding the best possible life for him. Each step forward, each new piece of information, and every bit of progress is a victory in itself.

[1] https://www.epilepsy.com/complications-risks/bone-health#:~:text=Many%20studies%20have%20shown%20an,and%20valproic%20acid%20(Depakote).

 

[2] https://pharmacologycanada.org/