I’m not sure if I want to tell you about this. But in the alt-newspaper tradition, we tell personal stories. We don’t shy away from using first-person pronouns. We acknowledge and disclose our own subjectivity. We are not all-knowing ivory-tower oracles, but boots-on-the-streets reporters describing what we see to the best of our limited abilities.
My 4-year-old son has had two seizures in the last week. These seizures were unprecedented and, so far, remain unexplained.
The first seizure happened at a Reno park in the evening. My son Clyde was there with my partner, Margot, and my teenage stepdaughter Josephine. Clyde collapsed suddenly, started convulsing, and stopped breathing. Margot thought he was choking. Another parent at the park suggested she sweep his mouth and throat for obstacles. She did. His airway was clear, but he still wasn’t breathing. He bit down on her finger. Margot reassured the supportive parent that the blood coming out of his mouth was hers. Josephine called 911. After about two minutes, Clyde stopped convulsing and resumed breathing.
A fleet of first responders arrived quickly and responded professionally. He was by then conscious again, but pale, bluish and disoriented. Later, before I had even considered it, Margot said, “If you write anything about this, be sure to thank the people who were at the park. It was horrific, and everyone was so kind.”
An ambulance took Clyde to the pediatric emergency room at Renown. A doctor there told Margot, “The first seizure is free,” by which he meant that they weren’t too concerned with determining a diagnosis—which is infuriating. Especially since it’s, of course, not actually free. The doctor prescribed a nervous-system depressant in case it happened again, and he told Margot we’d need to get a referral to see a pediatric neurologist for further tests.
The prescription was the usual pain in the ass to get, at the only 24-hour pharmacy in the valley, the Walgreens over the freeway. We called Clyde’s regular pediatrician the next morning for an emergency visit. We saw her that afternoon at her office on the St. Mary’s hospital campus. She ordered bloodwork and said her office would send the referral to the pediatric neurologist. Then we spent a couple of hours calling around town to find somewhere to get the bloodwork done that day. Eventually, we headed to Northern Nevada Medical Center in Sparks, the third hospital we’d visited within 24 hours.
Are you still with me? Your eyes might be glazing over. Hospital stories, doctor’s office stories, insurance stories—at this point, they’re kind of like airline stories. Everyone’s air-travel stories are the same. Whether it’s delayed flights, prolonged layovers, cramped conditions, ridiculous routing—it doesn’t matter. The details might change, but the crux remains: It’s dehumanizing. You surrender some of your humanity for a little while to get corralled, shepherded and inspected, but in exchange, you travel from one side of the country to the other in a matter of hours.
But a bad experience of air travel can make for a shitty day or two. A bad experience with the medical-industrial complex goes on and on for weeks, months, years or decades, and costs thousands and thousands of dollars. And medical care shouldn’t be dehumanizing.
The day after our visit to the pediatrician, I called Renown to schedule something with the neurologist. Every call to Renown includes at least half an hour of sitting on hold, punching buttons for their automated phone system, and pointless conversations with disgruntled workers trying to pass the buck. I finally got on with the right person, and they hadn’t received the referral. I called back the pediatrician’s office, and they said they’d faxed it the day before.
Seriously, a fax? What, was the Pony Express rider not available?
I lost another couple of hours of my life calling back and forth between the two hospitals, dictating fax numbers: “It was sent from fax number (X) to fax number (Y).” “They said fax number (Y) is a Renown number, but not the right office. You need to send it to fax number (Z).” And on and on and on. It becomes the responsibility of patients to rectify the basic failures of medical offices to communicate with each other. And I hadn’t even started dealing with the fucking insurance companies yet. But I was finally able to get something scheduled.
The worst part of all of this is that none of it is shocking. I’m not looking for sympathy and don’t want to exploit a serious family crisis for any reason. This stuff—the disgruntled gatekeepers, the antiquated technology, the cavalier doctors—none of it is surprising. We expect it. But it is not OK. It’s a systematic problem that needs to be reformed. That’s one reason I decided to write about these experiences. But here’s the real reason: I couldn’t write about anything else right now.
After some tough conversations with the family and with Clyde’s pediatrician, we decided to go to a long-planned family reunion on the Oregon coast. That’s where I am now as I write this, and where Clyde was a few days ago when he had his second seizure. The episode was not as severe as the first—he didn’t stop breathing this time, and we were more prepared—but it was still totally fucking terrifying. And now it’s an ongoing problem, not an isolated incident. We spent about five hours in the ER at a hospital in the sleepy coastal town of Newport, Ore.
The vibe there was different than at the hospitals in Reno. I never got the sense that we were getting hurried along. The doctor was kind and patient, and he seemed genuinely concerned. He asked if Clyde had seen a pediatric neurologist yet.
“Not yet,” I said, “but he has an appointment.”
“Good,” the doctor said. “Hold on to it. Those are hard to get.”
I work for a healthcare system and patient phone calls are often transferred to my direct line or my direct line is posted in insurance carrier directories. I have no patient information due to no need to know for my job. I’ve been told by many of the callers that it is a long wait time and unclear choices for which number to push. Frustrating enough for routine calls….
I’ve also had to be the coordinator between my insurance company and a provider’s office to get a referral faxed and faxed to the correct number to receive needed services. Thank you for reporting an all too common situation. Best well wishes for the care and treatment of Clyde.
Most doctors don’t consider the possibility of tick-borne disease or know how to test properly for it, but it’s a common cause of seizures and neurological problems that should be ruled out (or in). I recommend finding a LLMD and getting a full tick-borne disease panel through Vibrant Wellness or a similar specialty lab. Standard labs are insensitive (false negative rate is as high as 50%) and do not test for all strains. Many TBDs can be transmitted by fleas and mosquitoes. Many people do not get a rash or remember a tick bite. Ticks can be smaller than a poppy seed. I mention this because most people (including doctors) assume they would know if they had been bitten (or if their child had been bitten). A recent study indicates one in seven people worldwide has been infected with Lyme disease. Most people don’t know they have been infected and harbor it as a stealth pathogen. But it can quietly — or not so quietly — wreak havoc in the body. I hope you find answers for your son’s illness quickly. I hope you will explore the possibility of tick-borne disease — even though most doctors you approach are likely to dismiss the possibility outright or after standard labs come back negative. I went through this personally, and it was a nightmare. Keep advocating for your son until you find answers.
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