On a Tuesday early this summer I got the call from daycare that no parent ever wants.
“Mrs. Bengtson, your son is in the office, he has a fever.”
My heart stopped and my mouth went dry. Then my heart started racing and I started breathing fast through the surgical mask that I had been wearing 8-hours per-day since the beginning of the pandemic.
“Thank you, we’ll be right there.”
In normal times, a child with a fever would mean a mild annoyance.
We’d figure out who was going to take off work to go pick-up the sick child, lay him down on the couch, pull out the ginger ale and Pedialyte, and wait for his body to fight off whatever garden variety virus was making him ill.
Most likely, we wouldn’t even call the pediatrician, unless he had other symptoms that made us concerned about something bacterial or more serious that would require antibiotics or medical treatment. We’ve been around the illness block enough times to know that nine times out of 10, a doctor’s visit for these symptoms would lead to nothing more than being sent home with instructions to push fluids and rest to help fight off what was likely “just a virus.”
But these are not normal times. This is 2020, and COVID-19 is coursing the globe and has to date taken roughly 180,000 lives in this country. The pandemic has disrupted normality since March, leading to limited contact, cancelled plans, and an abruptly halted school year. Millions of people throughout the country are out of work, and a call about a fever now causes a moment of panic instead of a feeling of inconvenience.
First, I called the pediatrician.
I was told that they couldn’t order COVID-19 testing through that office, and they advised me to do as I would have done in normal times and push fluids and rest. I was told that I could call the state testing system if I really wanted to have him tested. I’m a healthcare worker, so I really felt like I needed to know what it was we were dealing with, so I went on the state website to request an appointment.
After filling out the questionnaire, I was offered an appointment, but the first appointment anywhere near our house was Friday (this was Tuesday). Frustrated, I called another hotline through University of Iowa Hospitals and Clinics, and was able to schedule a video visit the next day. At that appointment, the physician we spoke to agreed to order the testing, which was completed that afternoon. About 12-hours later I received an email alerting me to new test result in my son’s electronic medical record. I quickly logged on and breathed a huge sigh of relief . . . negative for the novel coronavirus, aka COVID-19.
We were so relieved.
My son was feeling better and had some more energy, and with the negative test result I was confident we were in fact simply dealing with a garden variety cold or virus. I figured he would drink some extra fluids, take some acetaminophen, and be back to his old self in a day or two.
Except he didn’t get better.
In fact, he became worse. Over the next several days we would alternate acetaminophen and ibuprofen every 4 hours. His temperature would hover around 100 as long as the medication was active, but as soon as we neared the 4-hour mark it would spike — 103, 104, and then 104.5 at its highest point. He was tired and lethargic. He started complaining of sore legs and a stiff neck.
After three days of fever I called the pediatrician’s office again and asked to schedule an appointment. To my surprise, I was told that because he had a fever, he couldn’t be seen in the office. I could schedule a telephone visit but they didn’t have video visits available. I explained that he had a negative COVID test, but was told that didn’t matter.
So, I called two different urgent cares and got the same message. I was told that if I wanted a physical examination in-person, I would have to go to the ER I explained that this wasn’t an emergency but that he did have a persistent fever that needed medical evaluation. The answer didn’t change.
Finally, exasperated, I called back to the pediatrician’s office and asked to speak with a supervisor. I attempted to be polite, but I’m sure the frustration was evident in my voice. I repeated my request for an in-person appointment. I was worried about strep, a bacterial infection, or something else that could not easily be diagnosed in a video or telephone visit. Finally, my request was granted as long as I took a specific appointment time the next day and agreed to mask both myself and my child and call when we arrived prior to coming into the clinic so we could be taken directly to an exam room. I agreed.
But, that night, my son woke-up at 3 a.m. crying that his neck hurt so badly that he couldn’t turn his head. He was shivering and registered a fever of 104. All thoughts of the clinic visit were forgotten as we packed into the ER. By the time we got there, his fever had come down some and he wasn’t as scared. We waited a little while to see a doctor, and while the resident recommended a lumbar puncture and blood work, the attending physician decided that my son didn’t appear sick enough to have bacterial meningitis, and it was probably something viral. So he repeated the COVID-19 test and was ready to send us on our way.
I requested a strep test as well, which was negative. The physician spent a good deal of time telling me that COVID-19 usually wasn’t serious in children, so I shouldn’t be very worried. Afterward, I realized I should have pushed harder for blood work or some other kind of testing, but at the time I was so happy that he didn’t have to endure a spinal tap that I didn’t argue.
We got home around 8 a.m. We pushed a ton of fluid that day and continued alternating the medications for fever. For awhile, I thought it was working, but by evening he was shivering again and crying about his back hurting. I also started to notice some redness under his left eye, and two circular spots on his belly that I was sure hadn’t been there before. I toyed with going back into the ER, but by that time I was second guessing my judgement, having been pushed off so many times.
So, I waited until morning and looked at it again. This was Sunday morning, and when he woke-up he had a 102 degree fever, the left side of his face was swollen, his left eye was drooping, and the two spots were bigger and more defined. I sent a picture to my sister, who is an ARNP, and she said he needed to be seen that day. I called the on-call pediatrician at noon when they opened. The scheduler told me, again, he couldn’t be seen in office with a fever. I asked to speak with someone else, and was able to talk with a nurse who asked me to text pictures of what I was seeing to their clinic phone.
I did so, and within 15 minutes the doctor called me back.
“Those spots look like Lyme. I’m ordering testing at the lab tomorrow when they open, but you need to get two doses of antibiotic in him today. Even if you have to wake him up in the middle of the night we need to get this started now. If it’s not Lyme we’ll make a different plan after that.”
So we did.
We went to the pharmacy, got the antibiotic, and gave him two doses. The next morning, we gave him a dose of ibuprofen an hour before the lab opened and prayed he didn’t have a fever when we arrived. Our prayers were answered, and we got the lab draw completed. That afternoon the tests came back with a positive diagnosis of Lyme Disease.
Treatment: 21 days of antibiotics and monitor for any continuing neurological signs.
That was the end of our very long week.
In the end, it took six days, two telephone visits, two COVID-19 tests, one strep test, and an ER visit before we received the appropriate cause of my son’s symptoms. I talked to multiple people on the phone, and had to be more assertive than ever before. I also spoke more harshly than I am proud to admit to at least one person as I attempted to have my son assessed.
I don’t know for certain if the story would have been the same in a different time, but I hope that our experience will remind parents (and healthcare professionals) that we have to remember that not all fevers are COVID-19.
My son’s symptoms were not all typical of Lyme Disease. We never saw a tick, the rash came late, and it didn’t have the classic “bullseye” appearance.
We needed medical help, and I had to fight to get it.
It’s been over a month now since our experience, and I’m happy to report my son is completely fine, with no residual symptoms. But we had to advocate hard to get him care. As I reflect back, here’s a few skills that I know I would use again, if I had to do the experience over:
Don’t Panic
Not all fevers are COVID-19, but I admit that my first thought when I answered the day care call went to that possibility, and my anxiety about this probably made it difficult to navigate a challenging situation.
Politeness
I realize that by asking for an in-person clinic appointment for a child with a fever, I was asking for an exception to the office policies. These policies are in place to keep other people safe and are there for a reason. Knowing that very sick people are not in the clinic helps parents feel comfortable doing things like bringing their baby in for necessary immunizations.
There are times when talking on the phone that my voice was sharper than it should have been. I could hear the deescalation tactics that I myself use at work (“Ma’am, I understand this must be very frustrating . . .”) being used by the person on the other end of the line. Next time, I would focus hard on being polite and keeping my calm as I navigate through the system. I would also try to remember that the person answering phones probably has little to no power to make exceptions to rules and policies, so I shouldn’t take my frustration out on them.
Persistence
On the other side of the coin, being polite doesn’t mean giving up when you are advocating for your child. I had to talk to multiple people to receive permission to “break the rules” and have a clinic appointment. I had to call back multiple times to be sure that they hadn’t forgotten about me. I started to doubt that what I was asking for was really necessary. But if I hadn’t been persistent, my son might not have received the care that he needed.
Pragmatism
Some policies can be changed or exceptions can be made, and some cannot. I recognize that when I am asking for something outside the norm, this is not the time to be choosy about appointment times or other requirements. Believe me, if the clinic had told me I needed to dress both myself and my son in a Haz-mat suit and carry a kitten, I would have asked what color they wanted the kitten to be.
At the end of this experience my son is healthy and recovered. That is the important part.
But I did learn that during a national health emergency, we as parents may need to be more assertive than usual to get the care our kids need.
Not all fevers are COVID-19.
Strep throat, appendicitis, UTI’s, and bacterial infections still exist even as we socially distance and shelter at home. I hope that you don’t have to push through systems for medical care, but if you do, trust your gut. You know when something is wrong with your kid, and when they need to be seen.
Don’t panic, but be polite, persistent, and pragmatic, and don’t stop until you get the results that you need.
Stay healthy friends. Together, we’ll get through this.
