Matthew's Journey with Lennox-Gastaut Syndrome
Matthew entered the world during a long birth. Intervention was needed, and the use of forceps resulted in a hematoma that thankfully diminished over the weeks following. He was a beautiful, healthy, happy baby and we were sent home with no other complications.
Shortly after going home, Matthew started experiencing stretching episodes where he would make fists and arch his back. These occurred every two minutes. The pediatrician reassured me that his stretches were normal baby movements. I immediately sensed something was wrong despite the pediatrician’s reassurances that Matt was not having seizures.
After two months of stretching episodes, that seemed to grow in severity and numbers, we made the first of many trips to the ER of the closest world-renowned children’s hospital. After a weeklong stay and a battery of tests, Matthew was diagnosed with “Generalized Seizure disorder”. It was heartbreaking to learn the “stretches” were actually seizures and Matthew had been having them for two months without intervention or possible treatment. With the information I know today, I believe Matthew experienced undiagnosed infantile spasms as a newborn.
Then at six months old, Matt experienced his first tonic-clonic seizure that occurred with respiratory distress. It was scary for the entire family, we all felt helpless during the seizures. Rescue medications were not available or used at the beginning of Matthew’s seizure journey.
My heart hurt that no matter what we tried there was no control for the seizures he was experiencing. It was exhausting expressing my concerns as his mother only to feel unheard. Despite the reassurances that Matthew was fine and nothing was wrong, I was driven to seek answers.
I was a single mom who not only had Matt’s care to manage, while seeking the answers, but also I was the sole supporter for me and my boys. My career took a backseat. I was very lucky to have understanding employers along the way, but management of employment outside the home and seeking answers for your child is extremely difficult to balance. Family life revolved around Matthew’s condition. We missed out on so many family events. My family lived life full of last-minute unexpected changes. The seizures interrupted plans daily. Matt’s siblings missed out on childhood experiences. There was no guarantee I would be able to commit to any type of schedule for sports, or special events, etc. I struggled to balance work, frequent hospital admissions, and the emotional challenges that come with the process of living with LGS.
Seizures became more severe and unpredictable as Matthew grew. He experienced mostly tonic-clonic, but did have all the other seizure types as well. Matthew’s drop seizures stopped when he had a corpus callosotomy around the age of 8. Matthew required constant vigilance, with his daily care, especially at night. Matt’s tonic-clonic seizures occurred almost nightly. With every seizure, and there were hundreds monthly, I grew more angry due to my feeling that I was not making a change fast enough for my son. I was tired, sleep was never deep or refreshing. I called it “surface sleeping”. Matt next to me with my hand on him so that I could bolt up and monitor the seizure that was happening, administering rescue medication as needed.
At age 14, a new epileptologist confirmed he had Lennox-Gastaut Syndrome (LGS), after I noticed it on our first visit paperwork. The LGS diagnosis brought a new perspective, but the challenges continued. Despite ongoing efforts, finding an effective treatment to reduce the frequency and severity of Matt’s seizures remained elusive. As a result, my focus shifted to prioritizing Matt’s overall quality of life. This new approach aimed to enhance his well-being and daily experiences, recognizing that while seizure control was important, it shouldn’t come at the expense of his overall happiness and to live his best life.
Matthew tragically passed from SUDEP at the age of 18. Life with Matthew was beautiful and I appreciated his approach and view of life itself. He just loved the people around him and made life seem so simple. Matthew loved chocolate milkshakes, music and singing! He was always the first one to take part in karaoke and loved the spotlight on him!
Matthew lived life with joy and unconditional love. Matthew is remembered for his positive spirit, despite LGS challenges.
“The decisions you will be faced with are never easy ones. If you make those difficult decisions from your heart and a place of love you cannot go wrong.”
-Written and submitted by: Kathy, Matthew’s Mom
Updated 09/30/24 (KK)