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» LymeNet Flash » Questions and Discussion » General Support » Girl Loses Life to Tick-borne Illness

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Author Topic: Girl Loses Life to Tick-borne Illness
seibertneurolyme
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http://www.khqa.com/news/news_story.aspx?id=37053

Girl loses life to tick-borne illness
By Rajah Maples
Posted: Thursday, May 31, 2007 at 9:14 PM

LEWISTOWN, MO -- It's a parent's worst nightmare, and it happened right here in the Tri-States.

You've heard a lot about lyme disease, and its harmful....potentially fatal effects.

But there's *another* tick-borne illness that you should be concerned about, and a local tragedy is the unfortunate proof.

7-year-old Ellen Cary of Lewistown, Missouri got sick around Mother's Day.

Many thought it was just a normal, childhood illness.......but what they didn't know ended up taking her life way too soon.

Her parents agreed to sit down with our Rajah Maples in hopes of preventing this tragedy from happening to someone you love.

When Ellen Cary started coming down with a fever, she was diagnosed with an upper respiratory infection. Her condition got worse, so doctors admitted her to the hospital and was later transferred to St. Louis Children's Hospital.

Rajah-- "You thought you were going to come home with her from St. Louis, didn't you? You never dreamed this would happen?

Eric and Harriet Cary: "No, it never crossed our minds. They diagnosed her with H-L-H and then they turned around the next day and told us that she had ehrlichiosis, which is caused by a tick bite. We had never heard of it before, but they told us the ehrlichiosis had triggered the disease called H-L-H."

A few days after Ellen was admitted to St. Louis Children's Hospital, doctors declared her "brain dead." Her parents were told there was nothing they could do, other than pack up, head home and make funeral arrangements. And it all happened in just *10* days.

Eric: "They say it's a very fast-acting disease, but they don't know too much about it."

Rajah-- "I appreciate you doing this interview, because I would hate for another parent to go through this."

Eric and Harriet: "Definitely not. I mean, what we've been through is a tragedy, and I would hate to see any child go through what Ellen went through.

Rajah---"I never got to meet Ellen, so let's talk about her life. What was she like?"

Eric and Harriet: "She was everybody's girl. Everybody loved her. She always had a hug or smile for somebody. Always thought of other people."

The Cary's want us to remember Ellen's thoughtfulness....and they also have some thoughtfulness of their own to pass along.

Harriet: "Just be careful. You never know."

The Centers for Disease Control and Prevention visited the Cary's home this morning to interview them about Ellen's case.

The center plans to test for ticks in every area in which Ellen had spent time.

We talked with a doctor St. Louis Children's Hospital about the illness.

It's treatable if it's caught early, but can be fatal.

Dr. Ericka Hayes says the hospital has already seen about 8 cases so far this year, including Ellen's.

Ehrlichiosis can be tricky to spot because its symptoms can be mild at first, and they can resemble a number of other illnesses.

Symptoms can include fever, headache, joint pain, fatigue and sometimes, a rash.

Dr. Hayes says it's *very* important to tell your doctor if you've pulled a tick off your body.

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Lymetoo
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Wow....how tragic. Missouri is #1 in Ehrlichiosis I think. I'm so sorry for the family.

Really, really sad.

Did you post this in Medical?

--------------------
--Lymetutu--
Opinions, not medical advice!

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trueblue
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Bea, I hope you don't mind I copied your post into the obituary thread. (I was unsure if it was already there.)

--------------------
more light, more love
more truth and more innovation

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bettyg
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[cussing] how very sad; 10 day illness; she's brain dead and gone!!! this poor family going thru such hell.

i'm going to print this before lunch and HAVE in my JUNE 1-30 lyme disease/co-infection window display at ames public library!

i'm going to have info there on LYME CONTROVERSY TOO, etc.

bea, thank you for posting this sad story.

CDC WAS THERE TODAY TO CHECK THINGS OVER FOR THESE TICKS! finally they are acting on something after a young 7 year old dies who didn't have a chance to grow up and experience life. [Frown]

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Geneal
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Prayers to the family of this little girl.

What a tragic loss....

I can't imagine losing one of my children, but it would haunt me

For the rest of my life, if it were due to something like a tick-bite and Miss-diagnosis.

Another cry for the education regarding Tick Borne Diseases!!!!!

Maybe another family won't have to suffer the same tragic loss.

Hugs,

Geneal

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CaliforniaLyme
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That poor poor kid-

--------------------
There is no wealth but life.
-John Ruskin

All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer

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MagicAcorn
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Wow - that poor mother.

This is absolutely got to be the most painful experience to lose a child. I had a niece die when she was 11 months old so I can understand the devastation they must feel.

When I got lyme I was pregnant and this was a daily fear for me so much so I didn't allow anyone to throw me a shower. I didn't want to jinx my very precarious situation. I was lucky.

Maybe as a community we can reach out to this family.

--------------------
 -

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seibertneurolyme
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HLH is Hemophagocytic lymphohistiocytosis

http://en.wikipedia.org/wiki/Hemophagocytosis

Symptoms of HLH could also be symptoms of acute Ehrlichiosis -- but the problem is that I am pretty sure HLH is one of those "rare" diseases and in my opinion Ehrlichiosis would be a much more common illness that should have been tested for sooner.

I know there are others out there who have been tested for "rare" diseases and the docs would not consider the obvious more common tickborne illnesses. In hubby's experience University hospitals are notorious for this.

This is just my opinion and not medical advice.

This tragedy could possibly have been avoided if docs were better at diagnosis and were open minded enough to consider all the possibilities.

Bea Seibert

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CaliforniaLyme
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HLH is like TTP a secondary syndrome triggered by an activating infection- also can be triggered by EB virus for example-

--------------------
There is no wealth but life.
-John Ruskin

All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer

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Deb
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I also wish to remind everyone that another serious symptom of ehrlichiosis is kidney failure. Six years ago, unknown to us at that time, my husband was infected by a tick carrying Ehrlichiosis.

Due to this infection he lost 70% of his kidney function. He was very close to being put on kidney dialysis by his nephrologist. He suffered many other debilitating symptoms as the months went on before we were refered to the right doctor - direction and treatment.

He was so ill in so many ways that it seemed almost a miracle when 300 mg of doxycycline daily restored his health. After being ill for six months and out on medical leave for five of those months, he was well enough to return to work after taking the doxy for only four weeks.

His kidney function nver returned to his base line range of functioning, I am happy to say that it did return to the normal range of functioning after treatment.

In addition to kidney failure, he did end up having successful shoulder replacement surgery last year due to the damage caused by the Ehrlichiosis. At the time of his illness one of his doctors, orthopedic, was able to document the joint destruction via imaging through the course of his illness. It was amazing to see. Even the rheumatologist he was referred to was surprised by the damage done in such a brief span of time to both his shoulder and hand/wrist.

Currently, the only remaining damage from the Ehrilichiosis left to deal with is the destruction of his right hand/wrist. The only option at this point is to freeze the joint to control the pain. Once we deal with that, I guess we have closed the book on all that this infection has cost my husband. We have been trying to space out his surgeries to optimize his work schedule/needs. I suspect he will be ready to deal with this in the next year or so.

We had learned the hard way, there truly are many implications and potentially dangerous outcomes that can result from being infected with Ehrlichiosis when left misdiagnosed and mistreated.

I truly express my heart felt sentiments for this family who lost their precious little girl to this disease. I apologize for this long winded post but I just can't express enough the potential serious outcomes when doctors and patients do not recognize the various symptoms of Ehrlichiosis.

Best Wishes,
Debbie/RI

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livinlyme
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so tired of hearing all the tags.. so tired of hearing about all the deaths...

Someone has got to open their eyes and relize how serious this is gotten and DO something about it .. and the government will NOT..
our petitions don't seem to make a whole lot of difference..

SO what do we do.. we can't all lay down and die like sometimes I think those in higher places (on earth) wish we all would..
Anyone got any bright ideas?
I am lost and plum out of them...

Seems too many in authority have a containment on this issue.... and I am lossing all hope on this battle...

--------------------
"Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it."

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5dana8
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[group hug] Wocali [group hug]

hoping & praying you can feel better soon [group hug]

--------------------
5dana8

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bettyg
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livinlyme, you asked for ideas....

see my post in medical on my LYME WINDOW DISPLAY AT LOCAL PUBLIC LIBRARY; read about what all i put in there plus the handouts for public.

i need to go down there and HAND OUT have a Q/A session. that's my solution. i posted the above article on this little girl whose life ended before it began! [cussing]

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CaliforniaLyme
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Debbie, that is weird, my husband, who I have not thought had any TBDs until YESTERDAY, has had 2 shoulder surgeries, 2 wrists surgeries and
unfortunately is going into kidney failure attributed to his diabetes. Reading your post made me jolt upright from surprise-!!! Yesterday his knee was killing him all day long, a throbbing pain around the joint, excruciating... With where we live, I couldn't help but think he has been infected-

Anyway, SO MUCH Ehrlichiosis is blood negative- they were lucky to find it with this little girl but I wish they had found it in time-

--------------------
There is no wealth but life.
-John Ruskin

All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer

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Deb
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California Lyme,

It is true that testing is most difficult. We hade more than one negative test result for Ehrlichiosis using Quest and East Side labs.

So, I told his doctor that I wanted his blood sample sent to Yale University for testing. At that time, Yale was open to doing this. However, the first blood sample got lost at the lab. So the lab director took personal interest and did speak to our doctor by phone and he himself over saw the processing of the next blood sample.

Our doctor, I say our because this doctor is now treating me for Lyme/Bartonella, began Ehrlichiosis treatment regardless of the local test results being negative. We needed a positive blood test result for Ehrlichiosis in order to get MetLife to pay us 13 weeks of back pay. Metlife agreed that my husband was ill with something but that he was fit for work since we didn't have proof of a diagnosis.

It is funny that on the very day we had signed a contract and mailed a retainer fee to a lawyer to appeal MetLife's denial for benefits, we received a call from our doctor saying that Yale just faxed him a copy of the positive test result. Once we had that test result in our hands, it was like all our troubles went away. Metlife immediately cut us a very sizeable check for thirteen weeks at full pay. It was a really tough battle but it was worth the time and effort.

I have to say that all my husband's doctors were most concerned and actively seeking a correct diagnosis. However, at the same time it just seemed like such a circus to me. He was seen by his internist, orthopedic, gastrointerologist, nephrologist, rheumatologist and finally the infectious disease specialist. He had numerous test of all sorts to which nothing ever showed. Except he did have abnormal blood lab results in the areas of kidney function as well as other parameters. In addition, we had imaging results to show rapid destruction of his shoulder and wrist. The later imaging actually showed bones "eaten away" that were once viewable on the films early on in his illness. Some bones were actually nonexistent as the infection progressed.

The nephrologist early on wondered if a TBD might be a potential but the results were always negative so we got swayed in the wrong direction and ended up chasing down other potentials with other specialists.

My husband was a real mess at that time and was also having significant neurological involvement as the infection advanced. I felt like I was having to be his constant care giver and advocate.

I only wish it didn't take five months to get this thing properly diagnosed and treated. Lucky for us that the infectious disease specialist suspected Ehrlichiosis and treated for it and wouldn't stop treatment until he was symptom free.

I wish your husband well. I too am diabetic and have found that my own internist, whom I highly regard, is quick to blame things on Diabetes at times even though my glucose levels are in good control.

Six months ago my internist thought I might be having kidney failure based on recent labs. My "Lyme doctor" did not concur. He felt it simply was due to the GI side effects and vomiting I was having from the antibiotics. We gave me a long antibiotic break and sure enough the levels all went back into the normal range and have remained there since restarting the antibiotics. I simply was becoming dehydrated.

These TBD are so complicated in nature and having to deal with the current "battle line" is going to further complicate things for patients of TBD.

Best Wishes,
Debbie/RI

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bettyg
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sorry, can't remember who; newbie posted a link about this entitled like.....read this; it's this article!

but i went to is link, and there are STORIES THERE NOW, SO I COPIED THEM TO IS LINK.

i bolded things wrong that i caught that we, lyme community, should reply to clearing up mistakes noted. going to bed now.... [sleepy]

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GRC
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It was me betty,sorry I reposted.!!! I have deleted it.....
I think ?? If not I am sure I will be corrected !!
as always.

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pineapple
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my 7 y/o son now has an upper respiratory infection and a circular rash, both appearing about the same time. I am scared about co-infections and I cannot afford to go to my LLMD again for a while and they would not give me advise about doseage or which antibiotic over the phone. (I understand.)

I could see how easily one could die from these diseases because physicians simply are not aware of co-infections, and they still don't know how to diagnose lyme disease.

The grieving family of Ellen has my deepest sympathy. I am so sorry to hear that this happened.

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bettyg
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GRC,

if yours did get deleted, please click again on the site, and copy/paste COMMENTS SUBMITTED BY READERS here to bea's post. i don't have time to do this again....thanks! [group hug] [kiss]

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GRC
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http://www.khqa.com/news/news_story.aspx?id=37053

Here is the link.You/We ect can also post reply on this site.Maybe get people directed here to learn more.

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GRC
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Readerrs comments:

Submit a comment about this story


so very sorry about your loss
I have never heard of this disease but have had a few ticks on me. We live in a rural area and have many oak trees on our property. We have six dogs and have pulled many ticks off of them every year. We have found a good tick prevention and one of the stores in our area and have not had many problems since using this product. I cannot think of the name of it right off hand but will try to find the name and will post it to this sight when I get it. Again I am deeply saddened by your loss and will hold your in my prayers. Sincerely, Sue Warfield

-- susan warfield, oroville California

Re: "Ticks in area" & a poem of comfort for little girl's family...........
My husband has been picking (tiny black ticks) off of his skin nearly everyday from doing outside work for the telephone company in and around the area. This put a real scare in him. He was treated at "outpatient" for a tick bite about 6 weeks ago after it left a HUGE red circle on his back and was swollen up with considerable pain. The dr. treated him with 3 weeks of antibotics and said that he was considering it to be lyme disease. Be sure to check yourself for ticks (which seems to be in abundance this year). If you find one and pull it off within 48 hrs., you are not at risk for developing lyme disease.

By the way, if the knew the email address of the parents of this little girl, I would send them the link to one of my poems to bring them comfort. It's entitled "My Daughter Walks with Jesus." Here is the link:

http://www.marilynspoetry.com/view/?pageID=180108

-- Marilyn Ferguson, Versailles, IL.

Thoughts and prayers for you and your family.
First of all, I'm very sorry for your loss. I can't imagine the pain you are all feeling over the loss of your precious daughter.

My sons recently came home from a weekend away covered in ticks. They are covered with spots from where the ticks were attached. They both have low grade fevers and infections from the tick bites. They are currently on antibiotics as well. I just phoned my doctor and am trying to find out what kind of tests to check for the tick borne disease mentioned in this news article. Because of this news story, I am very concerned with what I'm seeing on my sons and am being cautious.

I don't want to make light of your loss, but I believe that this may save others' lives if we know what to look out for.

My thoughts and prayers for you and your family.

-- LeAnn Baker, Kahoka, MO

so sorry for your loss
First of all I am saddened to hear of this tragedy. You are in my prayers!
My 14 year old daughter has been sick for 4 days now with a bad headache, fever ( highest was 102.8) and sore neck. I took her today to the clinic and blood was drawn, but after hearing this story I am even more concerned. I dont remember her having a tick and she doesnt either. But im guessing she could have one on her and we dont know it...i will definately check her for one. Thank you for telling your tragic situation, it may just save other lives.

-- Lisa Zumwalt, Hannibal, MO

Be very concerned about summer "flu-like" symptoms.
Deepest sympathy to the parents.
My daughter had Ehrlichiosis, too, and recovered. We thought she had the flu. (so did the doctors), but when her legs became paralyzed and a rash broke out, she was hospitalized. It wasn't until a month later that we found out what it was, although she remembered no tick-bite at all.

-- S. Myers, Philadelphia

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Melanie Reber
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(Thanks Sammi)


http://www.emaxhealth.com/39/12808.html

Missourians Warned About Tick-Borne Disease
Tick-Borne Disease


State public health officials are urging Missourians to protect themselves from tick bites following the recent death of a Northeast Missouri child from a tick-borne disease.

The child, who became ill after apparently being bitten by a tick, received intensive medical care but died May 23, about 10 days after symptoms initially appeared. Tests performed at St. Louis Children's Hospital indicate the child was infected with Ehrlichia chaffeensis, a disease related to Rocky Mountain spotted fever, according to State Public Health Veterinarian Howard Pue, D.V.M.

"Serious complications from ehrlichiosis are rare, but a death like this - of an otherwise healthy child - is a solemn reminder of the importance of avoiding tick bites to reduce the risk of getting a tick-borne disease," Pue said. "The risk of serious tick-borne disease is low for most people, but early symptoms are difficult to distinguish from other infectious and noninfectious diseases."

The Missouri Department of Health and Senior Services has received increased reports this year of several tick-borne diseases. Sixteen cases of ehrlichiosis have been reported so far, compared to an average of nine cases per year for the same time period over the past five years. In addition, 54 cases of Rocky Mountain spotted fever have been reported so far, compared to an average of 22 cases per year for the same time period over the past five years. Other tick-borne diseases reported in Missouri this year include two cases of tularemia and 10 cases of Lyme-like disease.

"While some of these cases are still under investigation or in various stages of testing, we are concerned about the large number of tick-borne disease reports we have received this year," Pue said.

Missouri State Epidemiologist Bao Ping Zhu, M.D., hopes Missouri physicians will heed the importance of this spring's unexpectedly high number of tick-borne disease reports.

"These reports appear to indicate increased tick activity for 2007," said Dr. Zhu. "Ehrlichiosis, Rocky Mountain spotted fever and tularemia can be life-threatening, and diagnosis can be very difficult."

Because tick-borne illnesses cannot be quickly diagnosed through testing, treatment decisions must be based on clinical evidence and the likelihood of tick exposure, according to Zhu.

"The best way Missourians can protect themselves is to avoid tick bites and become more aware of the symptoms of tick-borne diseases," Pue said. "If you have been bitten by a tick and experience a sudden fever, headache, rash, achy muscles, nausea, vomiting or general body discomfort, you should contact your physician for evaluation."

Tick-borne diseases can be effectively treated with appropriate antibiotics, especially when caught at an early stage, Pue added.

People can protect themselves from tick bites by:

* Avoiding areas with lots of ticks - walk in the center of trails to avoid overhanging grass and brush.

* Keeping ticks off your skin - apply a repellent that contains 20 percent or more DEET and read the label to make sure you are using it correctly. Wearing light-colored clothing that makes ticks easier to see and tucking your pants into your socks also can help.

* Performing tick checks - remove ticks from your clothes before going inside, disposing of them in a sealed plastic bag or other container. Check your body and your child's body for ticks after being outdoors, even in your own yard.

Pue urges parents to educate themselves about the safety of using insect repellents containing DEET on their children. The American Academy of Pediatrics has stated that insect repellents containing DEET are most effective against ticks and mosquitoes. Thirty percent DEET is the maximum amount currently recommended by the AAP for children over two months of age. DEET should not be used on infants under 2 months of age.

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