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Lavender In The Time of COVID-19

Our brush with staph scalded skin syndrome during a pandemic.

Strep Again

We have four kids so step throat is a relatively normal occurrence around our house. I doubt six months go by without a bottle of amoxicillin prescribed to one of them for strep or an ear infection. If amoxicillin were a brand, I’d invest in some of their stock.

So it wasn’t weird or concerning at all when Emily told me she took our 3rd daughter, Lavender, to the pediatrician and that the diagnosis was strep plus perhaps an allergic reaction to something else. She was itchy and had some redness to her face. So we start giving her the antibiotic, Zyrtec, and Benadryl.

It was a little weird but not super concerning.

This was a Friday. By Wednesday, they were admitting her to the pediatric unit of our local hospital.

Brief Timeline of Events

  • Friday, March 13th: First saw the pediatrician
  • Sunday, March 15th: Visit ER
  • Wednesday, March 18th: Pediatrician again, admitted to hospital
  • Friday, March 20th: Discharged from hospital

What Went Wrong

In short, communication between the pediatrician’s office, the ER, and us as parents was the reason this went from zero to OMG over a matter of days.

On her first visit to the pediatrician, they gave her a rapid strep test, which was negative. That happens often, and like usual, we were prescribed antibiotics as if it was strep. The usual routine.

By Sunday evening, her color had gone redder, burn like rashes developed on various parts of her body, but especially her face. She was itchy all over. My wife Emily and Lavender hadn’t slept well in days at this point. When we saw it was peeling like a minor burn inside her ear, we took her to the ER.

ER did another strep test. The rapid came back negative again. They remembered we said we got a strep test done on Friday, so they were able to dig up the test and told us results, “It was positive to strep”, and so it was Scarlet Fever, which as scary as it sounds is just really bad strep throat.

Scarlet Fever is relatively rare, with only 20,000 cases in the US each year. This helped explain why this strep was worse for her than other strep we’ve had in the past. ER staff said we were already doing what we needed to be doing and that there wasn’t anything to be done except wait it out 7-14 days. Grrrreat.

Monday and Tuesday, she continued to get worse. More lethargic. More burn like rashes. Less sleep. Started not wanting to eat or drink as much.

My wife Emily, the hero in this story, said since she wasn’t getting any better she was going to take her back into the pediatrician to see if they could at least give her something for the itchy burns or to help her sleep. I went along so I could literally carry her into the pediatrician because it hurt her to walk around with the burns on the skin behind her knees.

One of the first things out of the pediatrician’s mouth was:

I was going to call you today to check in on this, but you came in before I had a chance. Did the ER tell you it the test was positive for staph?

Ummmm no. The specifically said it came back positive for strep.

She called the hospital to admit Lavender immediately. It turns out she has Staph Scalded Skin Syndrome.

Pediatric Doc at the hospital was great. Immediately got her on IV fluids and IV Clindamycin. Let’s just say your young kiddo having to get an IV in a hurry is not something you want to experience as a parent.

Within 24 hours, it was pretty obvious she was responding well to the treatment. All in all, she stayed two days in the hospital and is to continue taking oral Clindamycin for the next 7-10 days.

What Should Have Happened

Lots of things should have happened better. I completely understand we’re in weird, busy, and somewhat panicked times. Doctors and staff are human, and mistakes happen.

I’m not a medical professional, and I didn’t even sleep in a Holiday Inn Express last night, but some of the failings here are easy to spot. Here is a probably not complete list:

  • ER was taking virtually zero COVID-19 precautions. It was absolutely business as usual there when we went in.
  • ER didn’t get diagnosis right and/or read the original strep test correctly
  • Pediatrician never followed up or communicated results to us directly for days
  • ER didn’t communicate results/diagnosis back to the pediatrician who might have caught it. They had no idea if anything else had been prescribed or changed with regard to her care.

By the time we were admitted to the hospital, thankfully, they were starting to roll out some COVID-19 procedures. Closed the coffee cart. At least asked us if we had traveled outside the country or had contact with someone known to be infected. Note this was over a week AFTER schools had been canceled for 2 weeks for the entire state of Kansas and the day after the Government canceled in person school for the entire state for the remainder of the year. Really not sure what the hell the hospital was waiting for. I can understand when various small businesses and individuals weren’t taking things as seriously as needed, but a hospital? Ground zero for the spread of all sorts of things? C’mon.

What We Need To Change

UPS and FedEx can tell me where my package is in real-time. Domino’s can show me at what step of the pizza making and delivering process my cheesy goodness is at.

Why the hell can’t I get a text or email alerting me to the results of medical tests? Why are not ALL tests results immediately available to the individual?

I realize not everyone is qualified to properly interpret the results of their tests. Some results might cause unnecessary concern or panic and result in a a few additional calls/questions to doctors.

However in this case we would have known 4 to 5 days earlier what was actually going on and would have been in a position to correct the ER diagnosis.

This would have likely meant a simple change in oral antibiotics and not hospitalization.

Even while in the hospital we had to repeatedly ask for the results of the blood cultures they had taken to see if the infection had spread to her bloodstream which can be really serious. Eventually got a “Oh yeah, that came back negative.” Great, thanks. Were you ever going to tell us?

What You Need To Do

You have to advocate for yourself and your family yourself. No one is going to fucking do it for you.

Keep a detailed record of everything you can in your phone. I have a detailed timeline of these events should it be necessary to refer to.

When they prescribe medication, ask for the name. Look it up on Wikipedia, Johns Hopkins, or Mayo Clinic. Ensure it’s intended to treat what you are diagnosed with. If it’s not listed, that can still be ok, but you need to talk to the doctor about why it’s being used.

Question them. Question everything.

And demand a record of every single damn test result. Get in their face about it if you must. You are legally entitled to these results. Get them. If we all start requesting them all, all of the time, they will make the system more streamlined.

Here is a guide to getting your medical test results that has good advice.

Conclusion

She seems to be recovering nicely now that we’re treating the correct thing. She should make a full recovery. We’re probably saddled with a huge medical bill that could have been avoided by emailing me a PDF over the weekend.

Our rating of the experience is zero out of five stars. Would not hospital again during a pandemic. hehehe

Posted 22 March 2020