Despite wearing a helmet, my son’s face was injured when it fell into the table at our first epilepsy support group meeting. Beth was the first person to reassure me. She has a crew of boys and 2 of them are the same ages as my 2 boys. Her son with epilepsy is the same age as my boy with epilepsy, and their intractable seizure disorders presented very similarly. At the time our kids were both taking one pharmaceutical – my son on Depakote, her son on Onfi – and not getting seizure control.
Another thing Beth and I have in common is a pull toward holistic and complementary healthcare. When I went to cannabis, she went to chiropractics. And I think her results are even more miraculous. I’ve been excited to introduce her to you (and will follow up with more on chiropractics in a second post). She wrote out their story so thoughtfully and beautifully that I left it exactly as she shared it with me:
“Our journey began one windy morning on a secluded beach. I took my 3 young boys (4 and under) to watch a baby sea turtle release effort. These tiny creatures had a terrific struggle just to crawl a few feet to the lapping waves, where they would begin their life at sea. This image would become symbolic of our own baby’s journey to life.
Later that morning, the boys and I walked along the beach, frolicking in the waves. I remember there was a large, menacing tree emerging from the water. I had a feel of foreboding, so we moved toward shore. As we walked, my little 2 year old Liam slipped beneath the waves. I reached down to grab him. Time stood still. His eyes were strangely open and his body appeared lifeless, turning in the water. It was only a matter of seconds before I pulled him out, but his face was blue, his eyes were rolled back, and he wasn’t breathing. Collapsing on the sand, I frantically did CPR. I screamed for help, but the beach was deserted. My phone died. My baby was dying in my arms and we were alone.
Miraculously, a woman in a turtle patrol vehicle came into sight. As she arrived, Liam finally began sputtering and breathing. We estimate it had been 6 breathless minutes.
Rangers transferred us to an ambulance . . . a barely conscious Liam screamed with an otherworldly wail, but he was alive!!
At the hospital, a team awaited our arrival. I stood in a dripping swimsuit, watching them work. They confirmed a near drowning and water in the lungs. After a 24 hour stay, we were released, considerably shaken, but alive!
Two weeks later we were visiting my parents. My dad screamed for me to come quickly . . . I walked into my parents bathroom to see Liam on the floor, ashen, eyes rolled back, my mom doing CPR. It was terrifyingly similar to before.
The ambulance took us to a children’s hospital. We stayed a week while they investigated possible heart issues or neurological problems. They determined that the near drowning likely began with a seizure, which is why it all happened so quickly. After another seizure, he was diagnosed with epilepsy.
He began on Keppra, a tiny dose. Like .25 ml. He was a little guy due to gastrointestinal issues earlier. I really hated to put him on drugs. I try to find natural healing whenever possible; I’ve had 4 drug-free births for goodness sake. But we felt it was best to start the Keppra.
For 4 months, he was seizure free and we believed it was just a fluke. In that 4 months, we had to move cross country. While we were looking for houses, Liam was running around playing. The next moment he was on the ground with a tonic clonic seizure. After that he began regularly having tonic clonic seizures. Our doctor upped the dose of keppra to .5 mL. No effect. He added Trileptal. We began seeing absence seizures.
During this time, we were also adjusting to a new city and moving into a new house (3 states and 4 moves in 10 months due to job training), so some of this period is a blur.
It was a struggle to accept the epilepsy diagnosis, even in the midst of many seizures. We also had him tested for celiacs (no), hypothyroid (yes), and checked existing heart anomaly (improved).
Liam was having tonic clonics every week, sometimes back to back. He always needed 5-10 hours sleep after or he would awake screaming. Sometime after the Trileptal was added, we began seeing drop seizures, which wreaked havoc. His face slammed down so forcibly that he broke teeth, bit through his lip twice, and had a bad eye injury. We felt like there was an invisible bully continually knocking him down. He looked so beat up.
The tonic clonics and absence seizures continued, along with 70 drop seizures a day.
His behavior was also out of control. He screamed constantly, refused to wear shoes and most clothes, and slept fitfully. We didn’t know if it was just an awful case of turning 3 or the meds. Most people didn’t understand and we received a lot of judgement for what we now realize were medicine-induced behaviors.
Around this time we changed doctors, began attending the Epilepsy Foundation meetings, and began transitioning off Trileptal. At the same time we began Onfi.
At one year after diagnosis, his EEG showed 50% more seizures than we were even recognizing. Our pediatric neurologist said to expect his seizures to be very difficult to control.
Soon after, a chiropractor, Dr. Steve Tullius, came to speak at the Epilepsy Foundation meeting. He said that the spinal cord is the primary highway for the nervous system and for the majority of information that has to travel back and forth between the brain and body. He then spoke about vertebral subluxations, which are structural shifts in the spine that occur when the body is subjected to acute and chronic physical, chemical and mental/emotional stressors. He went on to describe how subluxations of the spine negatively affect messages traveling to the brain, altering how the brain fires. Subluxations of the upper neck can also compromise the area containing the vessels proving blood flow to the back of the brain, as well the flow of the protective cerebrospinal fluid which circulates around the brain and spinal cord.
Everything he said made so much sense to me. I also knew from college psychology that inside the brain, physical pathways become deeper with continual use. The body continually experiences stress; that stress is transmitted along the spinal column as a nerve signal; that signal encounters a subluxation, misfires, leading to a seizure. The ‘what to do with stress’ brain path deepens, and seizures become the body’s response to stress.
We signed up for an evaluation with Dr. Steve. His scans confirmed that Liam’s spine was massively misaligned, particularly at the atlas. We signed up for 2 weekly visits. Consistency would be important to teach the body to hold the spine’s new position.
At this point, we were willing to try anything. Our neurologist said ‘don’t waste your money.’ However, our family had experienced a previous success with chiropractic. My husband was in flight school and experiencing severe air sickness. He went through the military’s ‘spin chair therapy’ – which is as horrible as it sounds – in an attempt to reset his inner ear. He set the record for spins and the flight doctors said ‘We think it’s time to give up flying.’ I suggested we try an alternative therapy. Mark went to a chiropractor, who demonstrated a highly misaligned atlas was pressuring his inner ear. After just 4 adjustments, Mark was flying again. He is now an excellent and happy pilot with thousands of flight hours.
The visits to Dr. Steve were like a reprieve. No one lectured me because Liam wasn’t wearing shoes or winced at his screaming. At first, I continued to go because it was a safe place. Liam experienced continued seizures, and once a tonic clonic 5 minutes after a visit. We believed his body was still adjusting and continued faithfully.
Within 3 months, his seizures had stopped. We had 3 weeks out of town with a couple relapses, then by month 4 Liam was . . . seizure free!
He is now nearing 2 years seizure free. He is a vibrant, smart, and sweet 5 year old. We are blessed beyond measure.
We continued to see Dr. Steve bi-weekly for nearly a year, then reducing to once a week. After a year, we have just reduced to every other week! Liam’s spine and nervous system look better than mine.
After one year seizure free, Liam had another EEG. His neurologist was amazed . . . his brain showed ZERO abnormal activity. Just a year before his seizure activity displayed very high. He continues on 5 mg of Onfi once a day. We hope to wean off meds this fall.
Some have asked ‘was it the meds or chiropractic?’ We believe it was chiropractic because, as busy and fallible parents, we have missed up to a week of doses with no relapse whatsoever.
Nine months ago, our 4th son was born around the one year anniversary of seizure freedom. It had been 2 years since the near drowning on the beach. Like one of the lucky sea turtle babies, Liam has fought his way to a healthy and thriving life. We had the help of many: the Epilepsy Foundation, Dr. Steve, prayers from family and friends.
Our new baby boy is Dylan Tobias, which means ‘born in the waves of God’s goodness.’ His name reminds us of the life that was nearly lost in the waves . . . and has now been renewed.”
Good work mama. Thank you for sharing. There is so much hope.