I recently attended an online symposium for my son’s rare, super-refractory epilepsy syndrome: febrile infection-related epilepsy syndrome. FIRES is considered one of the most catastrophic seizure conditions, typically occurring “out of the blue” in healthy children from 4 to 6 years old. New-onset refractory status epilepticus (NORSE) is the same syndrome but in young adults.
No matter which Western treatments they try—from heavy-duty anti-seizure drugs such as Depakote and Keppra, to intravenous immunoglobulin, steroids, cannabidiol, a ketogenic diet, and vagus nerve stimulator implants—nothing, and I mean nothing, works. Anti-seizure medications (ASMs) either don’t work, wear off, or even worsen seizures—yet we’re still told they need to take them.
Breaking all statistical estimates, we’ve had significant success reducing my son’s seizures. I’ve been told several times to stop trying to cure him and that there’s nothing left to do for him. “Just accept it,” the doctors tell me. Yet I don’t follow bad advice, and I’m also fortunate to know that the body can heal itself if you provide the right conditions.
It took some time and effort to get to this point of logical thought, when I simply analyzed my years of health diaries and found the numbers didn’t add up. On drugs, my son’s condition worsened—including his quality of life. We decided to complement my son’s mainstream care with integrative support and nutritional guidance, basing his healing plan on common sense.
My son is considered an outlier in the world of retractable epilepsy. He isn’t supposed to have improvements.
Drugs don’t work for kids like him, yet the maddening thing is, doctors keep giving more drugs. The science doesn’t support the fact that most people with refractory epilepsy are taking up to five ASMs per day, and neurologists and epileptologists rarely let their patients know they aren’t bound or contracted to follow the worn-down path of too many drugs.
The 30 Percent Rule
If you want to step off the hamster wheel and heal yourself or your child, you need to know the 30 percent rule. The rule is that 30 percent of epileptics won’t find seizure control with drugs. The Epilepsy Foundation terms the 30 percent as “uncontrolled,” “intractable,” “refractory,” or “drug-resistant,” meaning the person has failed to become (and stay) seizure-free with adequate trials of two ASMs.That means these 30 percent (which is more like 30 to 40 percent, as estimates vary depending on data sources) of drug-resistant children won’t grow out of their epilepsy after puberty, no matter how many well-wishers tell them so. Many of these children can’t have brain surgery because seizures occur all over their brain.
After you’ve accepted that magic pills won’t help for daily maintenance, you can look for the root cause and begin the journey of healing. The only place to heal, in my opinion, is off-road—outside the mainstream medical system.
When my son became part of the 30 percent of epileptics deemed drug-resistant, or “refractory” (the medical term I insisted on being added to his diagnosis), I requested that his epileptologist wean him off all ASMs. Believe it or not, his doctor agreed it was the best course. All I had to do was ask, but if I hadn’t, my son would be on the many ASMs that children with FIRES take for chronic epilepsy.
No drug is truly without side effects. The question is always whether the benefits are worth the risk.
Hopes and Fears
In the presence of undeniably brilliant epileptologists, geneticists, and neuroscientists at the FIRES symposium, a few of us showed up with our notebooks, waiting for the next big thing.Yet according to the doctors and scientists at the symposium—the best of the best in the world of FIRES/NORSE—they had nothing, simply nothing, for the chronic stage.
And what did the symposium focus on? The new protocols all were for the acute stage, and, though promising for those with new onset FIRES/NORSE, we were given nothing for our day-to-day management. For the chronic cases—which all of the parents in attendance were dealing with—they urged us to donate our children’s brains and organs when they die.
One epileptologist had been listening in on our small alternative successes on our social media support group. Some of our children were doing better with organic, whole food diets and IV vitamin C, hyperbaric oxygen therapy, and detoxification regimens. Yet this doctor went so far as to show us a PowerPoint discouraging parents from pursuing alternative methods. Another doctor told us nutrition won’t help us. In the next slide, our immunocompromised children were urged to get the COVID-19 jab.
Needless to say, the small handful of parents who attended the symposium, including myself, were left with the same feeling of hopelessness we always have after our quarterly neurology appointments.
Sometimes being surrounded by the most intelligent minds can only be helpful if real solutions are presented. “Our children deserve better,” a fellow FIRES parent friend texted me after logging off Zoom with more questions than answers.
Studies Don’t Support Added Drugs
Studies on epilepsy don’t support more than one drug for intractable epilepsy. A 2021 longitudinal prospective study on adding or substituting more drugs for drug-resistant epilepsy published in the journal Epilepsia, for instance, states: “Randomized studies in drug-resistant epilepsy (DRE) typically involve addition of a new anti-seizure medication (ASM). However, in clinical practice, if the patient is already taking multiple ASMs, then substitution of one of the current ASMs commonly occurs, despite little evidence supporting this approach.”Poor Quality of Life on Meds
Our children have basically become the drug company’s clinical trials. Parents have tried an average of 20 to 50 different drugs, surgeries, and other invasive methods on their children. They’re at the point where the adverse effects their children have experienced are so bad, doctors have no way of knowing if the comorbidities are from the drugs or the seizure activity.Nothing works, yet they still wait for their neurologist, who, like clockwork, offers more drugs. Many convince themselves the drugs are reducing their child’s seizures, yet they are guessing. They naively expect the neurologist to be keeping track.
Regarding the FIRES/NORSE symposium’s latest survey of families with the syndrome, parents rated their child’s average quality of life as 4.4 out of 10. The self-reported cognitive outcomes were 3.3 out of 10 for children and 5.5 out of 10 for adults. Though 69 percent of survivors went back to school or work, 100 percent required assistance, and 69 percent had worsened anxiety compared to before seizure onset.
How to Reduce Your ASM Drugs
So given that there is little benefit to ASMs for this group, how do you tell your neurologist or epileptologist you don’t need more than one ASM?You have more choice than you think. If you’re tired of being a lab rat for drugs that don’t work, you don’t need to worry about your neurologist breaking up with you. They can handle the news. They’ll actually respect you more if you know your stuff, come prepared, and advocate for your child, so here’s what you can do:
The number of ASMs and combination of ASMs and treatments my son has tried over the past eight years is in the double digits. We’ve lived in a perpetual state of weaning off one drug and increasing another. The weanings caused more seizures, and it never seemed like we were getting anywhere. The side effects of these drugs were unlivable. I once tried to fit them all on the spreadsheet. I couldn’t even fit them on a single page. My son experienced every horrible side effect contained in the black box warning.
For your neurologist to take you seriously, you need to prove to them that you or your child still have the same number of seizures on or off drugs. Keep a daily diary of every medication, supplement, and side effect, along with key events (possible triggers), as well as your food, drink, and water intake. There are apps for this if you prefer digital. “Drug-resistant,” after all, means “drugs won’t help,” so why take them?
Oftentimes, doctors who treat drug-resistant epilepsy know the odds presented in the studies. However, healing intractable epilepsy isn’t something they’re taught in medical school.
The way to say you don’t want another ASM is, “These drugs are ruining my quality of life.” If you already showed your data that the drugs aren’t improving your life, and the side effects are preventing you from a better quality of life, the risk-benefit ratio isn’t working for you.
Believe it or not, “quality of life” is a medical term that neurologists understand, and a doctor who follows the Hippocratic oath will listen to you.
Have your epileptologist or neurologist add “pharmacoresistant” or “drug-resistant” to your diagnosis. Now that it’s in your chart, any time you see a new doctor or specialist, they’ll know you are in the 30 percent.
They won’t push new ASMs on you unless you ask for them. This is a simple solution few people take advantage of.
Just like finding the right epileptologist is important, you need to find the right alternative practitioner as well—one who is both curious and caring. If they don’t recognize environmental toxins, find someone new. If they tell you your case is too complicated, find someone new. If they don’t want to give you their contact information when you’re having an increase in seizures during detox, find someone new.
This month, my son had only five tonic-clonic seizures. For the past five months, he’s had five or fewer per month—down from 14 to 25 per month. So my son is currently 50 percent below the average of 10 per month, and counting. This is the first breakthrough we’ve had in eight years, and it’s the result of doing our own research, finding the right integrative doctor to support us through detox, and knowing what works and what doesn’t. Everyone’s journey is different, but there’s one thing I know for sure: The 30 percent deserve better, and it’s up to you to search for the answers. I believe the answers are somewhere off-road, and you can only find them if you look.
