Justin's battle with Lemierre's Syndrome: October 2008

Thursday, October 30, 2008

Another Case and Michael

I received this last night!
Hi Tammy,
I don't know how to post to the site, so I am just sending you a message.My 19-year-old son is at UCLA with classic Lemierre's. They virtually ignored his high fevers and sore throats for more than a week. And being a stoic guy like Justin, he tried to say it was nothing. He was finally admitted to the UCLA hospital system, but fortunately,even though it has spread to lungs and skull, he should be okay. I want you to know it is the subject of the UCLA Med school seminar this week. And they are going to also suggest that the medical profession rethink the mentality that you send them home with Tylenol if it is not Strep. Thank you for making your site on the Web. I believe that Justin is somehow helping us get through this. Please keep it up.
Best regards,
Alice

And please continue to keep Michael, as well as all the other people in your prayers. Michael is still in the hospital! His mother sent this update to me this morning,

Michael just had another echo and it shows that the leakage in his mitral valve is slightly less, but it still is a big leak, and the clot is smaller, BUT he has fluid around his left lung now. They will give him lasik for a few days to see if the fluid will go down. We don't really know what this means as of yet. We need to talk to his cardiologist about it.

Thank you to all the nurses and even Dr's that have contacted me letting us know they are helping get the word out! They have all put up flyers around the hospitals they work and is passing around our website to everyone they can.

I have ordered more business cards so if you see me out or would like me to mail you some please let me know. I should have them this week.

The new bracelets are going to be in this week too. We are asking for $3.00 or up donations for these as well as the pin or magnet ribbons we have. If you live out of St. Louis please email me @ sunflwz2@yahoo.com and all we will need from you is a check for the donation and we will get them out to you, I will let you know via email what mailing address to send it to.. Please add $1.50 for postage. I am going to set up an paypal account so if anyone wants to pay via CC they can through them. I'll let ya know when it is up and running.

Awareness and knowledge is the key to battling this disease! Even if you don't know much about Lemierre's that's all you have to say to people.
"I don't know much about this disease but I know it is VERY deadly and has taken the lives of young adolescents all over the US and the world. So please check out this website!"

Luv,
Tammy

Monday, October 27, 2008

Craft Fairs

Well they seem to be going well. We have had a good response and most of the people we are meeting saw us on the News.
Thank you to everyone that has helped us!!!!
We really appreciate it and couldn't have done it with out you all!
I am now researching Taylor Momsen, she was supposedly in the hospital with a life threatening throat disease! She was released already but makes me wonder what it was!!!!!!! She is a 15 yr old actress that plays a role in the TV series "Gossip Girls"

Wednesday, October 22, 2008

Prayers needed for Michael

Michael is a young man whose life was turned upside down due to Lemierre's back in Feb of 08. He has fought a very long on going battle and has won his battle but today had to go back into the hospital because he has an infection in his heart valve. He has a website of his very own you can visit http://www.prayformichael.com/ I told him and his mother Justin's whole family and all his friends are praying for him. His mother and I have stayed in contact ever since she found out about Justin months ago.. I also learned of a young 18 yr old girl in OH that will most likely be getting a heart transplant too b/c of the damage done to her heart. I'm not sure of her name at this time but we also continue to for pray her.
Thank you!
love
Tammy

Monday, October 20, 2008

Lemierre's

Lemierre's syndrome (or Lemierre's disease) is a disease usually caused by the bacterium Fusobacterium necrophorum, and occasionally by other members of the genus Fusobacterium (F. nucleatum, F. mortiferum and F. varium etc.) and usually affects young, healthy adults. Lemierre syndrome develops most often after a strep sore throat has created a peritonsillar abscess, a crater filled with pus and bacteria near the tonsils. Deep in the abscess, anaerobic bacteria (microbes that do not require oxygen) like Fusobacterium necrophorum can flourish. The bacteria penetrate from the abscess into the neighboring jugular vein in the neck and there they cause an infected clot (thrombosis) to form, from which bacteria are seeded throughout the body by the bloodstream (bacteremia). Pieces of the infected clot break off and travel to the lungs as emboli blocking branches of the pulmonary artery bringing the heart's blood to the lungs. This causes shortness of breath, chest pain and severe pneumonia. Fusobacteria are normal inhabitants of the oropharyngeal flora. This is a very rare disease with only approximately 160 cases in the last 100 years.SymptomsThe first symptoms are a sore throat, extreme lethargy, fever, and general body weakness, but after a week or two these symptoms are followed by a spiked fever, rigors, swollen cervical lymph nodes and septicemia (infection of the blood) which can cause complications in other parts of the body including abscesses of lung, brain, and other organs, kidney failure and also effects on liver and joints if untreated.TreatmentLemierre's syndrome is easily treated with antibiotics, but because sore throats are most commonly caused by viruses, for which antibiotic treatment is unnecessary, such treatment is not usual in the first phase of the disease. Lemierre's disease proves that, rarely, antibiotics are sometimes needed for 'sore throats'. If a persistent sore throat, with the symptoms are found, physicians are cautioned to screen for Lemierre's syndrome. Fusobacterium necrophorum is generally highly susceptible to Beta-lactam antibiotics, metronidazole, clindamycin and third generation cephalosporins while the other fusobacteria have varying degrees of resistance to beta-lactams and clindamycin. The disease can often be un-treatable, especially if other negative factors occur,i.e. various diseases occurring at the same time, such as; meningitis, pneumonia etc.IncidenceLemierre's syndrome is currently a very rare disease, but was quite common in the early 20th century before the discovery of penicillin. The reduced use of routine antibiotics for sore throats by doctors may have increased the risk of this disease, with 19 cases in 1997 and 34 cases in 1999 reported in the UK. The incidence rate is currently 0.8 cases per million in the general population, leading it to be termed the "forgotten disease". The mortality rate was 90% prior to antibiotic therapy, but is now generally quoted as 15% with proper medical treatment, although one series of cases reported mortality as low as 6.4%

Tuesday, October 7, 2008

Welcome to our site!

Please make sure and read all the way through our website. There is a lot of helpful and useful information here. Pass it along to all of your friends. Even bring it up in conversation the next time you take your children to the Dr. Justin's Dr's told me while he was in PICU that people die from this disease they just don't know this is what it is. For some people there is just not enough time to diagnose them so the Dr's believe their death was caused by Pneumonia or strep. Just 5 years ago the statistics were 120 case in 100 years. NOW the statistics are 1,000 cases a year and 100 deaths a year! This disease is coming back and we have to be more aware! It attacks young health adolescents ages 14 - 25. Everyone I have personally talked to that has survived this disease refers to it as their "Near Death Experience!" This disease attacks the body faster then any Cancer or HIV. Justin went into the hospital April 16, 2008 and passed away May 12, 2008. 4 weeks it took this disease to take him away from us. Every case I have read is a little different, it attacks different organs each time. I've heard it attack the brain, the heart, the kidneys and in Justin's case it went after his lungs. We are continuing Justin's fight! Justin was not old enough to be a soldier but in my eyes he IS OUR soldier. He gave his life to save others in my point of view! We are saving lives and educating Dr's and bringing more awareness to this horrible nasty disease! For more information please also visit www.medrants.com This Dr has been studying Lemierre's and sore throats for YEARS!
Thank you!
Justin E Rodgers Foundation for Lemierre's Awareness

Monday, October 6, 2008

NEWS CHANNEL 5 INTERVIEW!!!!!

The interview we did last week is going to air tonight at 10 on Channel 5!!!!

Justin's news article in the West Magazine

This was taken from http://www.westnewsmagazine.com/news02.html

Rockwood student dies rapidly from little-known disease
By Diane Plattner

In April, Eureka High School student Justin Rodgers began to complain of a severe sore throat and was dead approximately one month later from an unfamiliar disease. Now, his mother hopes to spread awareness about the deadly disease.
Justin died in the early morning hours of May 12, the day after Mother’s Day, after losing a battle with Lemierre’s Syndrome, a serious bacteria that is not well-known and even doctors are prone to misdiagnose the disease. Unfortunately, Rodgers’ doctor was among that group after initially diagnosing him with strep throat on April 11, said Sheryl Rodgers, Justin’s mother.
“Justin had said, ‘Mom, this is the worst sore throat I’ve ever had in my life,’” Rodgers said.
She said that Justin’s doctor took no throat culture and gave her son medicine for strep throat. She said her son’s condition worsened over the next few days during which he had increased high fever, chest pain and a lump in his neck. On April 14, Rodgers took her son to St. Anthony’s Hospital, which transported him overnight to Cardinal Glennon Children’s Hospital where he underwent extensive testing, including X-rays and blood work, Rodgers said.
Rodgers said that hospital officials diagnosed him with Lemierre’s Syndrome, a bacteria that can surface after mouth trauma. Last July, Justin was in a car accident that resulted in mouth injuries that required him to get major dental work, including a recent new tooth. In addition, Justin had suffered a broken nose just before the onset of his sore throat, his mother said.
“I wonder if all this woke up the bacteria, which was already living in the body,” Rodgers said.
The last time Rodgers saw him fully awake was a few days later, when hospital officials decided to place her son on a respirator and sedate him with drugs.
“He was out of it but still with us then,” Rodgers said. “He would frown when the doctors worked on him. So he had some responses.”
However, Justin’s lungs kept collapsing, prompting hospital doctors by April 25 to place him on an ECMO machine to help rest his lungs and heart. Doctors at that point also put him into an induced coma, Rodgers said.
“At that point there was no response from Justin,” Rodgers said. “Still, I talked to him and rubbed his sore spots to let him know we were there.”
By Mother’s Day, Justin was leaking too much blood, prompting doctors to decide to remove him from the ECMO, a move they said was risky if his lungs were not healed enough.
“Once they took him off the ECMO, Justin’s face was getting gray,” Rodgers said. “He was holding his own for a few hours, but then he starting going downhill.”
Justin died early the next morning following Mother’s Day with his immediate family, including three older siblings, by his side, Rodgers said.
“He was our baby,” Rodgers said. “I think the hospital tried to keep him going so he did not die on Mother’s Day.”
The tragedy is not the first for the Rodgers family. They also lost a 4-year-old child in a horseback riding accident and had a stillborn child many years ago, Rodgers said.
“I thought God could not possibly do this to us again,” Rodgers said. “I asked why again, why us. But there is no answer. Here we are walking on egg shells again.”
Rodgers said she was at least thankful that Justin’s funeral was so big that people were standing outside, a huge tribute to his life. She also hopes to honor his life with a campaign to help spread awareness about Lemierre’s Syndrome, which she said often hits people between the ages of 14 and 25. It is not spread by kissing but instead lives in the body, she said. Her goal is to make people, including doctors, more aware of its symptoms so they are not mistaken for strep throat.
“I do not want Justin to have died in vain,” Rodgers said. “This is one bad bacteria. It is very serious. People should not treat it lightly.”
To learn more about Lemierre’s Syndrome, visit the Rodgers’ family Web site at lemierresyndromejrodgers.blogspot.com.