Saturday, June 11, 2011

'Worst Sore Throat Ever'

It's time for a serious post -- no kidding -- to celebrate the three-year anniversary of No. 2 Son's recovery from Lemierre's Syndrome.

And to educate folks about what is also known as 'The Forgotten Disease.'

Think 'House' episode, not organ recital.

If you've never heard of Lemierre's (pronounced la-MEERS), you have lots of company. When N2S was admitted to the ER, then the floor, then the ICU, then was operated on and intubated, until he was finally diagnosed, no one in the hospital except one gifted infectious disease specialist (played by Hugh Laurie) had ever heard of the disease, let alone treated it.

Family members are familiar with the script: N2S (played by James Franco) had his wisdom teeth removed in mid-May of 2008. Two weeks later, he returned early from a weekend music festival, complaining of 'the worst sore throat ever.' His doctor (played by Katherine Heigl) ran tests for strep and mono, telling him to return if he didn't improve in a week's time.

A week later he was back at the doctor's office complaining that it hurt to breathe. The strep and mono tests had returned negative, so the concerned physician called an ambulance. Thirty-six hours later N2S was in ICU attached to a ventilator and in septic shock as the staff scrambled to figure out what was going on.

Husband and I (played, respectively, by Colin Firth and Angelina Jolie) got the dreaded 2 a.m. hospital call only an hour after we had left the building. When we returned, N2S's medical team plopped a folding chair in the middle of an empty room, sat me down, and explained that an ENT surgeon (played by Russell Crowe) was trying to drain an abscess found behind his right tonsil, which explained the sore and swollen throat.

Meanwhile, they had identified the infection as anaerobic bacteria and had switched to an appropriate antibiotic IV. However, he was in sepsis. They dodged the question of what my son's survival chances were with  'We'll have to wait and see. He's young and strong so he has that going for him.' I clung to the one piece of good news --  the infection was bacterial, not viral, and therefore in my mind anyway, more treatable.

Later that morning brought good news and bad: The ID specialist had diagnosed N2S with Lemierre's. The breakthrough diagnosis (music by Hans Zimmer) was confirmed when he observed starbursts of red pinpoints on N2S's extremities -- a signature symptom -- indicating ruptured capillaries near the surface. The bad news: An ultrasound showed a blood clot in his jugular, another telltale sign of the  disease.

That day and the next were the worst in my entire life: watching his vitals on the monitor hour after hour, making sure he was warm enough/cool enough (love those air-conditioner blankets), whispering words of encouragement that I didn't know whether he even heard. I told him silly things, ranging from calling his new IV cocktail 'the Sparta 300' of meds, to how he has beautiful hands and could probably find work as a hand model (additional dialogue by Carrie Fisher). Once he was stable enough, his ENT surgeon's second attempt to drain the abscess succeeded while the course of antibiotics slowly killed off the bacteria.

We got the Hollywood ending: N2S beat the disease and was discharged after two weeks. His home therapy included IV, injected and oral meds for up to six months afterward. From the time he had his wisdom teeth extracted, he had lost a quarter of his body weight and looked like a skull on sticks (now played by a shorn Shenae Grimes). 

I relate all this hoping to increase awareness of Lemierre's Syndrome. It is so rare only about 120 cases have been documented worldwide in the past 100 years -- small wonder the hospital staff were initially stumped.

The disease can manifest itself in different ways and is making a comeback. One case, documented on TLC's 'Mystery Diagnosis,' involved a college freshman undergoing two brain surgeries to remove abscesses (she made a full recovery). Another teen, featured in the September 9, 2008 issue of 'The New York Times'' Sunday magazine, wasn't so lucky.

Since the bacteria responsible for Lemierre's are anaerobic (fusobacterium necrophorum), they need to burrow deep inside tissue to survive (special effects by Pixar Animation Studios). Evidently, the throat offers an ideal environment: warm, wet, dark, thick. It's their toehold to a throathold, spreading and creating havoc throughout the body which if left unchecked will shut down all systems -- permanently.

BUT IT ALWAYS STARTS WITH THE WORST SORE THROAT EVER.

Please humor me. Please insist your doctor test before prescribing antibiotics, especially after conditions or treatment involving teeth, mouth and throat. BOLO for abscesses in such cases. Strep-busting meds won't kill Lemierre's, and by the time you find out, it may be too late. Many of its victims are otherwise healthy young adults.

I cannot imagine anything worse than losing a child. I feel fortunate to live in a region with some of the best medical minds and facilities in the world. But I worry about other promising young adults around the globe (played by the cast of 'Glee') confidently going off to college and dismissing a sore throat with, 'it's just a bad cold, I've been under a lot of stress.'

This is real life and death, not televised fiction.

To all you husbands, wives, parents, aunts, uncles, siblings and orphans:  The phrase 'worst sore throat ever' should sound an alarm in your head to seek medical treatment. Please help spread the word about Lemierre's so that it will not silence the ones we love.

For more fascinating information:

Wikipedia, 'Lemierre's Syndrome'

Diagnosis: The Way We Live Now: The Strep Throat That Wasn't. 'The New York Times' Sunday magazine, Sept. 9, 2008

'Mystery Diagnosis: Lemierre's Disease,' TLC Channel (accessible on YouTube)




Ok, this post turned out to be a blend of 'House' and organ recital, so let's just call it a house organ ....






Pass it along, and remember, it's all (c)opyrighted(c)2011(c)(c)

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