BeWell Wellness Story: Alex Raftopoulos
Pediatric Epilepsy
Alex was a perfectly healthy baby. He had was thriving and meeting all milestones. There was no indication or early symptoms that he would start having seizures. Alex was 11 months old. My husband was away on a business trip. We were suppose to go as a family but I decided to cancel last minute. I grabbed Alex out of the crib like any other morning. As we walked to the door to let the dogs outside he jerked backwards. I didn't think anything of it because he was always wiggly. It wasn't until he jerked a second time and almost fell out of my arm that I looked down to see him having a seizure. I had never seen a seizure before. I called 911 and the operator talked me through what to do. At the time, I didn't know what to look for our pay attention to, but hindsight tells me it probably lasted for five minutes.
The ambulance took us to the local emergency department where we were observed for four hours. We were told it was a febrile seizure, even though he didn't have a high fever. They told us to come back if he had another one within 24 hrs. I had a hard time believing it was febrile because he wasn't sick. He didn't have a fever. It was July and we had 100+ degree days, so maybe that was it. Fast forward 24 hours, our day started the same exact way. I got Alex out of his crib, and as we walked toward the kitchen he started having another seizure. We went back to the emergency department and saw the same doctor and nurse. Within an hour of arriving, Alex had another seizure and, this time, they were able to witness it. That's when the testing started. Spinal taps, blood draws and a rushed MRI. Alex was flagged for Neurofibromatosis because he has more than six birthmarks. We were on the schedule for genetic testing to be performed the next month.
Throughout that day we were trying to get my husband back from Montana and figure out what was happening to Alex. Alex continued to have multiple seizures throughout the day. My college roommate is a lead nurse at a Denver hospital and she told me to do whatever it took to get him to Children's Hospital. My husband made it back home around 9:00 pm for a night full of monitoring and seizures. At 7:00 am the next day we were being flown to Denver. Still no answers or response to medications. We spent 10 days at Children's Hospital Colorado. We blew through medications with no response or control to his seizures. Thankfully we had an amazing team of doctors working to find out what was wrong. During that time, two priests visited us which brought immense peace to us. My husband's family dropped everything to be by our side to help at the hospital, and my family took care of our 2.5 year old. Our friends and extended family prayed for us.
On day seven, a priest came to our room and blessed Alex with a Miracle Oil that comes from an Icon in Hawaii. After this blessing Alex had three big seizures throughout the night but after the third seizure he woke up. He sat up on his own and he smiled. It was the first time in days that he had muscle tone and interacted with one of us. It was a miracle! Soon after we made a big adjustment to his medication and started to see improvement. On day 10, we were released with an Epilepsy diagnosis of Tonic Clonic or Generalized (grand mal) seizures. Alex was on three different medications that were giving us "control". We knew we will had adjustments to make, but we were able to do those at home. My husband continued to remind me, "healing doesn't happen in the hospitals. home is for healing."
It was a long 30 days for trial and error on our prescriptions. But during these 30 days our friends and family reached out with ideas to help us. We were willing to try anything! This is when we found a pediatric homeopathic doctor. She guided us with the use of homeopathic remedy tinctures. We slowly introduced it to his body and started to see improvement. Next we took him to a chiropractor who did a cranial adjustment and also tested Alex for parasites. The chiropractor said he had them in his brain. I know this sounds crazy, but it can easily happen. With this information, we started a parasite cleanse. Again we saw more improvements. Alex's last seizure was August 15, 2024. It happened in the middle of the night while we were in Denver to see his neurologist. At that appointment we did one last adjustment to his medication.
At the end of August we met with the genetics team. They told us all good news - Alex didn't have genetic epilepsy or neurofibromatosis. As far as they were concerned, he had a clean bill of health. Not being able to pin point the cause of the seizures is actually good news. It increases the odds of growing out of them. Statistically 70% of kids grow out of epilepsy. That is huge! I wish someone had told me that early on. I also wish someone would have told me brain damage doesn't occur during seizures. Or that 1/10 people will have a seizure in their lifetime. Alex had gone 45 days with out a seizure and we wanted to try to reduces some of his medication. We knew that two of the three medications weren't controlling his seizures and that the other one was doing most of the work. Our Epileptologist didn’t love the idea of weaning him off of the medication but we knew we could handle the seizures if they returned. After a month long process, we successfully weaned Alex off of one of his medications without having a seizure!! On top of that, we saw him gain more confidence in himself with better balance and playfulness.
Alex has been called a miracle by two different doctors and all the people around him. We may never know what caused his seizures or what has controlled his seizures. As to cause, I believe it was a combination of multiple things: childhood vaccines, underlying infection, heavy metal toxicity, evil trying to attack a bright light, God trying to pull our family together, among others. His body was fighting something. Seizures are a symptom. When modern medicine can't find a clear cause throwing an epilepsy diagnosis is their solution. What we do know is that we never settled or accepted his diagnosis. There are so many things we can do to improve our lifestyle and health standards in our daily life. All of these things vary per individual or family, but change can happen. We’ve utilized holistic treatments like grounding sheets for his crib, EMF blockers on all devices, SunlightSauna with infrared light, we switched to non-toxic cleaning + laundry products, we get outside everyday, changed his diet to a modified Keto diet which has had great success for seizure control. We also lean heavily on our faith and pray daily. We have had help from so many people around us and we couldn't have done it without them. Alex's journey isn't over but together as a family we can get through anything.