Akron Children's Hospital and Dr. Blaise Congeni

I decided to repost a comment left on the facebook group page of Lemierre's Syndrome Fighters and Survivors because I have heard a lot of people searching for information on this disease and mentioned Akron hospital previously. If you are searching and discover the name Dr. Blaise Congeni, maybe it will help someone.

Here is the post: "TammyNgreg Clark Wow! Another akron Childrens Lemierres patient! So happy to hear your son is doing so well now! Congeni is AWESOME! He did an M&M conference on Lemierres using Stephanies case. She was the 19th case at children's when she was admitted and according to the dr's at that time she was the sickest Lemierres patient they had seen. We have taken Steph to childrens Er several times since because of her throat and I am so happy they know to take any visit very serious. I think awarness is spreading! I had introuduced Congeni to this group when he was gathering everything for the M&M conference. He was so happy to see there was such a group! The man is pasionate that is for sure! You could not be more right when u said life can change fast and all of us that have experience with Lemierres know what a wild scary ride it is! I am so happy that your son was able to be treated right away! Recovery can take time but as each day passes he will become stronger. I wish your son your family and you the best!"

Good update leads on Lemierres from group called Lemierre's Syndrome Fighters and Survivors

One mother, like myself, is attempting to correct inaccurate information reported in the news. Ironically, I worked for this newspaper group several years ago in Lake Tahoe. Mother Laurie Quarnberg posted in a group I am a member of Lemierre's Syndrome Fighters and Survivors several corrections in the article that appreared in the Greely Tribune in Colorado. I want to make sure her voice  is heard so inaccuracies are not replicated. 

Here is a portion of the story: 

When 16-year-old Madison Quarnberg of Greeley started showing symptoms of a sore throat, she didn’t know that it could almost cost her everything. Madison had symptoms of a sore throat and fever, so her mother, Laurie Quarnberg, took her to the hospital, where the doctor said that she had an infection. She was sent home with a round of antibiotics that was supposed to cure her. “I was really scared that first day,” Laurie said. “I knew something was wrong because she had a fever and wasn’t eating.” 

Please go to this link to see the full story. https://attachment.fbsbx.com/file_download.php?id=407422199369635&eid=ASvsxgBEbNeO5MWTMQoKLlO9tlyVRnlxZVyXdcOdxShGE_V6GmKHYc_vaC49xyFCKpk&inline=1&ext=1378332672&hash=AStyBv_CwX0ooWMK

Increase Awareness of Lemierre's Syndrome

Recently, I was thinking about the title of our blog: Bri's Hope for Cure of Lemierre's Syndrome. I think maybe what I really meant to call it and the reason why I started a blog, is because I wanted to increase AWARENESS of what Lemierre's is and how to diagnose it. The diagnosis is so important that maybe we should have called this blog: Increase Awareness of Lemierre's Syndrome. If treatment is begun, then the patient at least has a chance.

The problem is because it's The Forgotten Disease or The Mysterious Disease, treatment is delayed because of no diagnosis or wrong diagnosis and patients suffer or they die. My daughter was in excruciating pain for weeks. I couldn't help her so I felt helpless. But my helplessness was even deeper because not only could I help her with the pain, but her pain seemed to travel to different parts of her body. She complained of neck pain for weeks. Her body would go through fevers on and off. Then she was fine. Then it would reappear. It was so frustrating and scary.

While reading through Bri's medical records after we left the hospital, I found an excerpt from her main doctor who mentions it in her first record speculating what she may have. He later told me they had treated a young man several months before with the same symptoms. That was the reason he said he thought it possibly could be Lemierre's. What luck! This is a very rare disease with only approximately 160 reported cases in the last 100 years.

Lemierre's Syndrome: What is it?

I have learned a few things over the years about Lemierre's Syndrome: 

1. The medical term is REALLY hard to remember! ie., also known as postanginal sepsis and human necrobacillosis.

2. Lemierre's is called a syndrome or/and a disease. It is the  the occurrence of thrombophlebitis of the internal jugular vein (IJV) in the presence of an oropharyngeal infection.

3. It's commonly found in the mouth.

4. What are symptoms? Starts with sore throat, fever, weakness, neck swelling and progresses to shortness of breath, chest pain and possibly respiratory failure.

5. What are the characteristics? Septic blood clot formation in a jugular neck vein with emboli frequently traveling into the lungs and possibly joints and brain. 

6. What is treatment? Treatment includes antibiotics along with other measures such as ventilation, blood thinners, surgery and chest tubes. 

In Bri's case, she underwent two surgeries and then later when they found blood clots in her lungs and arms (yes, arms!) she began blood thinner therapy.

This disease was SO tough to diagnose because it appeared she had strept throat or something similar. Before she was diagnosed, I kept thinking, well, maybe she has one of those rare flus that strike people and there is no cure. In her case, the blood test was the first responder of saving her life! Because it found out she had sepsis (bacteria) in her blood. 

I hope these simple bullet points help someone searching for an answer to an unknown and undiagnosed case of Lemierre's Syndrome.

Monsters Inside Me on Animal Planet

I found the most recent story about a Lemierre's diagnosis while I was reading a blog I frequent about a young teen, Justin Rodgers, who fought Lemierre's and lost his battle. His sister has grown the nonprofit she established for him after his death. I have seen it grow over the years. Here is a link to his site: 
http://lemierresyndromejrodgers.blogspot.com/

Anyways, the story I read on her blog was about a story which aired in December last year on Animal Planet. Here is a brief synopsis which I am quoting from the Press Enterprise: 

"Abram, 23, was admitted to the hospital in April 2010 after complaining of a sore throat. He was subsequently diagnosed by Roberts and Dr. Tim Stevens, a former Arrowhead Regional oral surgery resident, with Lemierre’s — which is named after a French bacteriologist who, in 1936, documented 20 cases in which throat infections migrated to the bloodstream, potentially damaging vital organs. Abram was hospitalized for 28 days in the intensive care unit."

"An Arrowhead Regional Medical Center physician and a former patient who overcame a potentially deadly and rare disease known as Lemierre’s Syndrome will be featured in an upcoming episode of “Monsters Inside Me,” an Animal Planet Network television show."

Here is the link to the printed story: http://www.pe.com/local-news/san-bernardino-county/san-bernardino-county-headlines-index/20121205-colton-doctor-former-patient-to-be-on-tv.ece

I often think of Justin Rodgers because he was a healthy teen, like my daughter Bri, and he died and she is alive and thriving now at University California Santa Barbara. 

Primary Treatment: Antibiotics. Proper diagnosis is the biggest challenge!

Antibiotics are usually the primary treatment for Lemierre's. In my daughter's case, diagnosis came very late. We kept getting sent home with the possible diagnosis of "strept throat." 

Trying to find an underlying diagnosis for many conditions can be a very long and frustrating experience. With more rare conditions, like Lemierre's, a diagnosis can often take a long time. But the patient may not have the time to wait.

Lemierre's is considered a RARE disease. There are two other names for this disease:

2. Necrobacillosis and 

3. Oropharyngeal infection leading to secondary septic thrombophlebitis of the internal jugular vein

The important thing to remember is to keep pushing and be your own child's BEST advocate if doctor's cannot figure out or properly diagnose what's wrong. It's in cases like these you have to be the advocate and be involved. It's not the doctor's fault. 

In our case, I am grateful after a number of trips to the emergency room, one doctor at Scripps Encinitas Medical Center just happened to take a blood test. That is the instance they discovered my daughter Bri had sepsis in her blood. The clot in her jugular vein was spewing out bacteria into her blood. It is that one doctor who made the decision to take a blood test that initially saved her life!

Is Lemierre's cureable?

I found the following on netdoctor.com. I believe it simplifies what exactly Lemierre's is. Reprinted here from netdoctor.com

Question

What is Lemierre's disease?

Answer

Lemierre's syndrome is a rare complication of tonsillitis and other infections of the throat.

It was first recognised by a French physician in 1936 and is increasingly uncommon nowadays due to the use of effective antibiotics early on in the course of a bacterial illness.

In simple terms, Lemierre's syndrome describes an illness associated with the above and results in inflammation of the internal jugular vein.

This can lead to septicaemia (blood poisoning) and areas of infection at places elsewhere in the body.

The diagnosis is confirmed when the responsible bacteria can be grown from a sample of blood ('blood culture').

Treatment is by high dose antibiotics in hospital, usually straight in to a vein ('intravenously') and is continued for a period of up to six weeks after discharge from the hospital.

Because of the severity of the illness, and the susceptibility of the patient to develop septic areas within the lungs as a result of the original infection spreading.

Hospital admission is always needed and sometimes artificial ventilation for a while on an Intensive Care Unit (ICU).

With successful antibiotic treatment started promptly, a full recovery is to be expected, which, unfortunately, wasn't so often the case in Lemierre's day. Youngsters suffering from this complaint could easily succumb.

It sounds all in all like a particularly nasty infection and I for one am very glad that it is becoming a more rare occurrence these days.

Yours sincerely

The Medical Team

Read more: http://www.netdoctor.co.uk/ate/ent/203158.html#ixzz2ag8CuH80 
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