My son endured many changes in his anti-seizure medications
Jeff tried numerous combinations throughout his 42 years with epilepsy
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Like many others with rare diseases, my late son, Jeff, faced frequent medication changes to help him function as best he could. Jeff had Lennox-Gastaut syndrome (LGS), and his neurologist was always trying to find the right combination of meds to control his seizures. There were many periods when Jeff took about 20 pills a day.
When Jeff was diagnosed with LGS at age 9, he had taken only liquid medications. Swallowing pills with water was a new concept for us. Luckily, the doctor started Jeff on phenobarbital, and the pills were very small. It took a few tries to get them down, but once Jeff conquered that, it was easy for him.
Over the 42 years that Jeff lived with LGS, he tried many different combinations of medications. All of them had side effects. Some would make him so sleepy he’d fall asleep in class; others made him sick to his stomach, so he’d bring Tums to school in his pocket. Some caused weight loss while others made him gain weight. Several affected his balance to the point that he couldn’t walk in a straight line. Watching him try to navigate a room was plain scary.
The toll of trial and error
Sometimes he was on so many medications that he experienced toxicity, with his blood ammonia level way above normal. This required hospitalizations to stabilize him.
Every medication adjustment caused a lot of anxiety for Jeff and me. We’d rush to get blood work done and pray the change would help. However, over those 42 years, Jeff’s seizures were never controlled to the point that I didn’t have to worry about a sudden emergency room visit.
In Jeff’s 40s, his epileptologist told us that he just didn’t have any other options for Jeff aside from an experimental drug. It was a frightening thought, but we had no choice. I signed him up for the trial, which began in December 2017.
This led to multiple visits to Philadelphia, including some overnight stays, so Jeff could have his blood drawn several times a day. We really had hope. It seemed at first that his seizures were less frequent, so we thought this new drug might be the answer. Jeff was thrilled!
Unfortunately, it stopped helping after a few months, and in February 2018, Jeff had a grand mal seizure during dinner. He was rushed to the hospital and then transferred by ambulance to Philadelphia to be slowly weaned off the trial drug. It was a frightening experience that made us feel helpless.
Jeff was then placed back on the medications he’d been taking before the trial. I worried we were running out of options.
After that episode, Jeff’s seizure frequency slowly increased until, one day, he went into status epilepticus, was rushed to the hospital, and placed in a medically induced coma for more than three weeks. Multiple anti-seizure medications were given to him during that time, on top of the heavy-duty meds he needed while in the coma. Each day was scarier than the last.
Finally, Jeff was airlifted to Philadelphia again, and the doctors there tried a drug Jeff had not taken before. He was then sent to a skilled nursing home for rehab, where the new drug seemed to help slow the seizures. Some days, he simply slept all day.
Jeff endured many medication changes and numerous challenges in his life, but he never once complained. He tried, I tried, but in 2024, he lost his battle with epilepsy — my hero.
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.
