Our Daughter's Battle with Lemierre's Syndrome
I am the mother of a child who battled Lemierres' Syndrome and survived. I began a blog in March 2011,one month after she was diagnosed. However, I cannot access that blog at this time, therefore, it appears I have just begun to blog. The message is the most important thing here.
Our 17-year-old daugher Briana,
an accomplished crosscountry runner and AP student, was admitted to Scripps
Encinitas Memorial Hospital February 14, 2011. As parents, her dad and I only
knew she was seriously ill. we had visited the Emergency Room 3 times in 4
weeks. She had been traveling quite a bit during those weeks too since she was preparing to make a decision about college. That day we arrived on Valentine's Day in the hospital, her blood pressure was very low, we had been to the Emergency Room 3
times in 4 weeks. She was in Renal Failure. Her kidneys were not working and she
was in shock.
It appeared she had symptoms of strep throat, but when her
tests came back negative for Strep the first time we took her to the ER in
January, we had been puzzled at the result.
We had been to the ER a total of
3 times. In January, the course of 10 days of antibiotics seemed to quell the
symptoms, even allowing her to feel better. We actually thought she had overdone
it her first college recruit trip with a girlfriend and teammate from Rancho
Buena Vista at the end of January. She had exhibited all the symptoms of strep
and exhaustion. She returned home from UC Santa Barbara happy, but very ill. She
had a tendency to push herself. I thought this was the cause.
On February 17,
she was diagnosed with Lemierre's Syndrome, but it was 4 weeks from the start of
this before that occurred.
Lemierre's Syndrome, we learned was a rare
disease, also known as The Forgotten Disease, has been reported 160 times in 100
years. My decision to begin this blog was motivated by Bri, who said to me every
day of her journey, through tears and sobs, she never ever wanted others to go
through what she was going through. The pain that she endured I could not feel,
but I know how tough she is and it hurt my heart to see her in that much pain.
It looked excruciating. The pain came from everywhere every day, from her
symptoms, from her treatment, from the treatment for the treatment, from her
surgeries, from the problems which occurred from her surgeries and from her
recovery. This is her story.
Before that first trip to the Emergency Room,
following the trip to UCSB, her symptoms were extreme stabbing pains in her
neck. She had happened to spend the night at her older sister Krista's house in
Vista, near Bri's high school, and when I picked her up after work, I hadn't
realized how ill she really was until I saw her. I carried her school books and
backpack to the car as she groaned in pain. I knew she was running a fever too.
We stopped at the RiteAid in La Costa and I ran in and grabbed her drink of choice, Mango
Tango, some Motrin, Nyquil and Hall's throat lozenges at her request. I just
wanted to get the fever down and get her some sleep.
But over the next few
hours she just got worse, so I urged her dad to take her to the ER at midnight.
All I could think of was that it was really weird about the stabbing pains in
her neck.
They gave her IV fluids and pain meds and she immediately felt
better and came home. The antibiotics were prescribed for 14 days. She began to
feel better and we prepared for her next recruit trip to University of San
Francisco. Two weeks later
the ER doc, Dr. Andree, who made the decision to
take a blood test on that infamous third trip, February 12,2011, to the ER most
likely was the first decision during her treatment which saved her life. He
later confirmed with us when he visited us in the ICU that he indeed was shocked
at the results - bacterium in the blood - he said he had seen many teens come
through the ER whom had symptoms related to Strep. He had indeed ordered a blood
test, but not expected a result such as this one.
Her 14 days of antibiotics
following her UCSB trip allowed her to feel well enough. But then she would become ill again. When we were finally called to come immediately to the hospital when they found sepsis in her blood, her dad and I had been by her bedside at home the entire night before. We knew if we took her again to the hospital, they may send us home as before. As we got her out of bed and into the car, she was in such incredible pain, I wasn't sure we would be able to make it to the car without her dad carrying her. We arrived at the hospital and Dr. Andre immediately donned a special hooded mask and informed us he needed to start a central line. He needed our approval. We stood by her in the ER not quite sure what was happening. We knew she was in bad shape, but at least they weren't sending us home this time.
The doctor said her kidneys were not really working and they were going to admit her to intensive care. We stayed in the ER for a few hours waiting for many of the test results to come back. Evenutually, they admitted her and there began her journey from intensive care to semi-intensive care several times.
Over the next week, we met several doctors and specialists: Dr. Scott Eisman, the medical director of the ICU; Dr. Lin, Ear, Nose and Throat; Dr. Matthew Horn; Dr. Steve Kuriyama, a consultant in infectious diseases.
In the hospital, Briana exhibited forgetfulness, sort of delirium. She would ask me where I had been when her dad and I were actually spending the days and nights at her bedside. She kept asking why I had been gone for days and not come to see her. I thought it was her meds to make her sleep but after research, I found out that some patients have suffered from confusion and deliriousness. The nurses were so very helpful and nice, but Briana's "unknown" personality would surface...we laughed about it later, but on occasion she would curse or give a hand gesture to a nurse after she had left the room. This was very unlike our sweet, nice daughter who was always horrified if she wasn't being helpful to someone and making sure their needs were met. Briana was responding in certain, uncharacteristic ways because she was affected by the Lemierre's, not the meds.
Dr. Winn said they had found a clot in her jugular vein a week after she arrived and she had been downgraded to the "semi-intensive care unit." She seemed to be getting better. He advised us of surgery to either the tonsils and/or also a clot in her jugular vein. We immediately acquiesed and said whatever will get her better, take it out!
