The year was 1960 and I was 19 years old when Brent was born. He was my first born and I had no experience in what to expect. After he was born, not knowing what was wrong with him, the doctors took him from me and he stayed in the hospital for 3 weeks. He was listless, not nursing, and the Doctors had no answers. They told me he was not expected to live. They didn’t tell me why.
After 3 weeks Brent was stable enough to bring home but I knew something wasn’t right.
Throughout the years, Brent was in and out of hospitals (weeks at a time), going into, what Doctors back then called, “semi-comas”. It happened constantly with any excitement, Christmas, birthdays, etc. The Doctors said they weren’t seizures and he was “fine”. But he wasn’t fine. He’d vomit from the pit of his stomach, eyes rolling back into his head and each time rushed to the hospital in a “semi-coma”, never getting a definitive diagnosis. After years of taking him from one neurologist to another and going to major cities to see specialists, each had a different answer that the next specialist debunked and came up with a new theory. In truth, none of them knew what was wrong with my son. Finally, when Brent was almost 7 years old a neurologist said he had epilepsy. When I questioned his symptoms not being what I had read about epilepsy, I was told, well it’s just a “rare form of epilepsy”. I was then told to institutionalize my son. No name for this “rare form of epilepsy”, just that he would not be able to function in society so the best thing for him would be to institutionalize him. No matter how young and inexperienced I was I knew one thing- Brent would never live in an institution.
When Brent was 7, I took Brent and his younger sister and brother to California to visit my in-laws. While there, again I had to rush Brent to my sister-in-laws pediatrician in another “semi-coma”. This Doctor took one look at Brent and said he had another patient like Brent and said he would inject sugar (likely glucose but he said “sugar”) directly into his vein, if he was wrong it wouldn’t hurt him, but if he was right I was going to see something miraculous. Within a minute or two Brent went from an unresponsive unconscious boy to running up and down the halls. The pediatrician told me to go home and tell Brent’s Doctor what happened and he explained that he likely had some form of unregulated insulin secretion from his pancreas and it had caused a hypoglycemic brain injury and mental retardation.
After returning home Brent had 90% of his pancreas removed at a Children’s Hospital in Chicago after having been diagnosed with acute hypoglycemia (possibly Hyperinsulinemic hypoglycemia). At the time of Brent’s birth it was not a standard procedure to test blood sugar levels as hospitals do now. With each seizure, brain cells were dying. After the removal of most of his pancreas, Brent did not have another incident or seizure until he was 21 years of age. From age 21 on the seizures progressed in number and intensity over the years, going into status at times.
Despite all that, Brent has lived a great life. He rode horses and even had his own horse at one time. He bowled, rode a special bicycle, had a job in a sheltered workshop, was in the Special Olympics, went to church and loved meeting people and going to visit friends. Brent was walking, showering, packing his own lunch and picked up daily at home by a special bus that took him to and from his sheltered workshop. He had his routine and chores and felt good about his jobs. Life was good, or at least manageable…. until 2008.
In October 2008 Brent collapsed at home and was unconscious. An ambulance rushed him to the nearest hospital with extremely low blood pressure and abdominal pain. Again, Doctors didn’t know what was wrong but thought there was a problem with his bowels. They went in for exploratory surgery to find the problem and ended up removing 18 1/2″ of his small intestines. The Doctors speculated that he might have had a blood clot blocking blood flow to his intestines. They called it an intestinal ileus. He was in an ICU unit and started to recover from surgery. He even got up and walked one day when I went to refill my coffee. The staff did not like that he got out of bed so they started sedating him with drugs like morphine that he was not used to. Brent never fully recovered after that. He was in ICU for 6 months, had to have a tracheotomy and a feeding tube. Again, no explanation for what went wrong. They did every genetic test they could think of to try to explain why he wasn’t recovering and was in fact getting much worse. After 6 months in ICU we were told to take him home and call hospice. They were out of tests to perform and had no explanation for the spasticity and increased brain damage. We felt Brent was being, and had been, systematically dismissed due to his developmental disability. He was marginalized from the minute he was admitted to that hospital. We declined the “take him home and call hospice” advice and instead took him to another hospital for rehabilitation.
When Brent was admitted to the Rehab Hospital attached to a major university and medical school, he was immediately diagnosed with an Anoxic Brain Injury, spasticity, contractures, and a blood disorder (Protein C Deficiency) that came out of nowhere causing him to have to take Warfarin for the rest of his life. We are still trying to figure that one out and wonder if one of the AED’s caused the blood disorder. In May 2009 Brent came home… 100% dependent on others to care for him.
Between 2008 and 2010 Brent was in and out of hospitals, typically 4-5 times per year each lasting weeks, some months, all gut related. In 2010 he went on the GAPS diet and that resolved almost all hospitalizations except those that were seizure related.
Since 2008 Brent’s seizures are more aggressive and last longer and longer. He has stopped breathing during numerous seizures. We carry an arsenal of rescue pharmaceuticals to bring him out of his seizures. They leave him tired for over 24 hours after each dose and not in a great mood. Each medication has it’s own set of risks- none good.
Brent lost a lot during that horrible hospitalization, but he is a survivor and I know that his sister and I have made him happy with his life. His happiness shines through like sunshine. Our lives have changed drastically. It takes two people to care for Brent and there is little time for anything else. But Brent is happy- so we are happy as well.
You can imagine with Brent being over 50 years old he’s been on just about every anti-seizure medication ever made. We’ve lost count of how many AED’s he’s tried over the years, none stopped his seizures. Many, if not most, create horrible side effects- some even life threatening.
Brent has had a 10 day in hospital brain scan study, two Vagus Nerve Stimulator implants, as well as diets to help control seizures. Nothing pharmaceutical has worked to significantly reduce his seizures. For his spasticity he has a Baclofen pump implant. He should be bionic with all of these devices! And yet he still has Tonic-Clonic seizures on a regular basis and painful spasticity.
In 2013 we learned about several children being successfully treated with cannabis oils. After much research we headed to Colorado Springs in 2014 to see specialists, Doctors, and other patients, about options for treating Brent’s seizures and spasticity with cannabis oil. We are on a waiting list to try Charlotte’s Web, a non-psychoactive, high CBD, hemp-like plant. Brent was able to try THCa oil during his stay in Colorado. THCa oil is also non-psychoactive. The response was amazing. In 3 weeks Brent had ZERO seizures. We don’t know if we were lucky or it might have been a great answer for him. We won’t know until we can move. Due to Federal law we were unable to bring the oil home with us and Brent had a seizure his first night back home. That may seem a sad ending to a very hopeful trip, but it’s not. We saw results, Brent felt better and the community welcomed Brent with open arms. We are eternally grateful for all the help we received and the HOPE for a better future for Brent. A future which does not include so many seizures or the many pharmaceuticals that are damaging his internal organs.
We will be moving to a legal state so Brent can be treated. States are not acting quickly enough to save lives and this is unfair to so many patients- young and old. It only takes one seizure to take a life. You don’t know which seizure will be the one that does it until it happens. Now that we know we can stop the seizures or at least greatly diminish them how can we accept seizures in our daily or weekly life when we know there is a plant that can help prevent them? We can’t!
Colorado here we come!!