If our family knows much about anything it would be seizures. My husband and our youngest son, Draven, both have seizures. My husband had seizures from the age of 2 to 14. Then they stopped and the doctors thought he had outgrown them. About 4 years ago, he began having them again. He had to retire at age 40, lost his driver’s license and his freedom.
We went to several doctors and were given different explanations and many different drugs. Nothing was helping. We visited one neurologist who, after doing a one-hour EEG, insisted he did not have seizures. The seizures were taking a toll on him. His memory and mental capacity were in decline.
As a last hope, we found an Epileptologist—an expert in epileptic seizures who works with patients for which previous treatments have failed. After a week in the hospital, the doctor took him off his medications and had him on an EEG full-time, it came back that he was having clonic-tonic seizures (which are known as grand mal seizures), Atonic (known as drop) seizures, and complex-partial seizures.
After meeting with the doctor and discussing past and current treatments and the lack of any improvement, he suggested either the Vagus Nerve Stimulator (VNS) or brain surgery. We took time to consider both and spent a lot of time thinking and praying about it. We decided that we would go with the VNS and if it did not work, we would pursue brain surgery.
He had surgery to place the VNS 2 weeks before Christmas. On January 2, 2017, he had his device turned on. We were taught how to use the magnet when he felt a seizure coming on, or when we found him having one. That night at dinner, he began to have a seizure. I put the magnet over the device and within a minute his seizure stopped. To us, it was a miracle!
He went from having 3-4 seizures a day to that many in a week. It has been about a year since his implant. He must take his medications and be careful of any other medications that can cause seizures but there has been a huge improvement. His memory and his mental facilities are improving. And one time, he went 4 weeks without a seizure.
I would encourage anyone having problems with seizures and the current treatment is not working, to find an Epileptologist or another neurologist who is willing to look at the VNS or other alternatives. This has been life changing for my husband and our family.
For more information about VNS and its use in children:
Healthcare decisions should be based on the needs of patients, not their age. Pediatric patients are treated based on their size. The right dose of medicine is determined using their height and weight. Equipment is sized for their safety and comfort.
Categories: Diagnosis & Health Care
“What’s wrong with your child?” are the hardest words to hear. Finding a diagnosis for your child is one step in the right direction. Navigating the various challenges your child will face can be overwhelming. Keep showing up and facing the challenges.