Medical Forum / Diseases and Disorders / AIDS / October 2005
AIDS-related pneumonia: Taking notice of what wasn't said.
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David Canzi -- non-mailable - 09 Oct 2005 08:04 GMT Everything below is speculation.
The LA Times reported the coroner's diagnosis of Eliza Jane Scovill as "AIDS-related pneumonia". I've noticed that the LA Times article did not mention pneumocystis carinii by name anywhere. If the coroner's opinion was that Eliza Jane Scovill had some other kind of pneumonia and that AIDS had made her susceptible enough to die from it, he might very well describe a non-PCP pneumonia as AIDS-related.
In a letter from Christine Maggiore posted in AME and here, she mentioned that an ER doctor who examined Eliza Jane Scovill thought she might have haemophilus influenzae. I've heard of it before, but didn't know anything about it. I went searching and found the following:
http://textbookofbacteriology.net/haemophilus.html
"Disease caused by H. influenzae usually begins in the upper respiratory tract as nasopharyngitis and may be followed by sinusitis and otitis [ear infection], possibly leading to pneumonia."
Runny nose, ear infection, pneumonia -- in the right order.
http://www.drgreene.com/21_1102.html
"Those in close contact with people with serious H flu disease should receive preventive antibiotics."
"Those in close contact" would include Christine Maggiore.
From the LA Times article:
"For her part, Maggiore said that her daughter's death has taken a toll on her health; she's had trouble eating, sleeping and, this past summer, simply breathing. She's treated her symptoms with Chinese herbs, walked five miles a day and practiced yoga, and is now feeling better, she said."
Also from the LA Times article:
"In an interview, Gordon said he suspected an ear infection but believed it could be resolved without antibiotics. In a follow-up call, he said, Eliza Jane's parents told him she was getting better."
 Signature David Canzi "I am not denying anything." -- Celia Farber
DavidT - 10 Oct 2005 13:34 GMT Where/when do we find out what the coroner actually found?
BTW- There is a vaccine against haemophilus influenzae - a very effective one too. Of course, this potential life saver was also denied to EJ.
Alex - 10 Oct 2005 14:47 GMT > Where/when do we find out what the coroner actually found? > > BTW- There is a vaccine against haemophilus influenzae - a very > effective one too. Of course, this potential life saver was also denied > to EJ. "Denied"?
Alex
DavidT - 11 Oct 2005 09:25 GMT Yes, denied.
All kids have the right to be protected against H. influenzae by vaccination. To deliberately not vaccinate a child who is at potential greater risk (someone who may be HIV infected) is plain stupid.
Fondoo - 10 Oct 2005 19:04 GMT We all know people never die under a doctors care, we know nothing, they have all the answers. Toxic drugs are our only source of long term health, treating drug induced disease with more drugs makes perfect sense and effective treatment can only be shown in studies, just because 100's of studies have been found to be fraudulent we have to assume all the current ones are good. The millions of studies the toxic drug makers paid for prove this. You all are such suckers
David Canzi -- non-mailable - 12 Oct 2005 01:38 GMT >Where/when do we find out what the coroner actually found? I don't know if we ever do. My understanding from a distance, as neither a lawyer nor an American, is that it becomes public knowledge when/if it is used as evidence in a trial.
 Signature David Canzi "I am not denying anything." -- Celia Farber
pauleewhiting - 10 Oct 2005 23:59 GMT Since posting my unpublished letter to the Los Angeles Times here at our web site, a number of people have contacted me with requests for replies to questions or to charges leveled by detractors. As much as I would love to respond, I am under strict advisement from my attorney to wait for the completion of the independent review of my daughter's autopsy report before speaking publicly on the topic of her tragic death.
In the meantime, I thought you might be interested to know something of my on-going negotiations with the LA Times over my 150 word letter to the editor.
The Times declined to publish the short letter posted earlier this week for a variety of seemingly ever-changing reasons. First, they wanted me to strike the opening sentence which states "medical records show my daughter did not exhibit symptoms consistent with pneumonia." Even though none of the doctors wrote of any suspicion of pneumonia in her charts, and the Times' article mentions her breathing measured normal on an oxygen test, the Times says that her cough and runny nose are included among the symptoms of pneumonia, therefore I cannot write she did not exhibit symptoms of pneumonia.
Instead of arguing that a cough and runny nose are also symptoms of anything from a cold to allergies--and as common among three year-olds as scuffed shoes and temper tantrums--I accepted their ruling and changed my sentence to read that she did not exhibit symptoms consistent with "advanced pnemonia." No go said the Times. So I tried "life-threatening pneumonia." No way. They claim that this statement still contradicts her medical records, records which the Times does not, or at least according to privacy laws, should not have in its possession (not that there's anything to hide). So I changed the sentence again to read, "She did not present with the chest pain or blue lips and nail beds indicative of life-threatening pneumonia...," and am waiting to hear if this will be allowed.
Following this semantic wrestling match, we engaged in debate over the standard definition vs the LA Times definition of a fact. Qualifying what counts as fact is important since (suddenly) according to one of the reporters, "the Letters to the Editor page is for facts, not opinions." Although that rule didn't seem to apply to Nora Castillo of Whittier California whose rather harsh opinions about me were published last week, I agreed. Let's all stick to the facts. But then I learn that, in the case of my letter anyway, a fact is only a fact if: 1) it is in concordance with what the Times' reporters have in their notes; 2) appears in the autopsy report (which includes only select citations from my daughter's medical records; or 3) refers to an event that occurred in the presence of LA Times reporters or a third party witness. Given these three letters-to-the-editor-laws, I was told I must delete my reference to what ER doctors said about seeing nothing in my daughter's chest X-rays to explain her dire condition.
I can't say their three-point qualification rule feels particularly fair or reasonable (was I supposed to call the LA Times before I dialed 911?), but since we happen to have a third party witness to our ER experience, OK, let the Times' ruling stand. I then explained how a neighbor followed us to the hospital that night, how he was there when the attending physician at the ER told us Eliza Jane was dying and that none of the many tests and X-rays revealed why. And just in case that's not enough, I also have the hospital report which states that after all the tests and X-rays, there was no apparent cause of death. Hopefully given these facts, they'll allow my sentence about the ER to stand.
We then moved on to a truly perplexing discussion: according to the LA Times, the coroner's office has a policy that prohibits disclosure of autopsy information by telephone. This means that my letter can't mention how the medical examiner, Dr Changstri, called our home the week of May 23 and spoke with my husband. But if it's true the coroner's office doesn't disclose autopsy information by phone, (and in our grief and devastation we somehow imagined this conversation), how did the LA Times learn of the findings in my daughter's autopsy report before it was finished being transcribed and printed? And what about the call to our home from the coroner's office on the morning of September 13 in which they disclosed by phone the alleged cause of her death? We're we dreaming?
Since it seems that any letter from me is unlikely to be approved for publication by the LA Times, please feel free to share the newly revised letter below along with my correspondence with the paper's Readers' Rep that follows.
With thanks for your interest in another side of the story,
Christine Maggiore
pauleewhiting - 11 Oct 2005 00:18 GMT Revised letter to the Editor, Los Angeles Times
In response to your article "A Mother's Denial," medical records from three separate pediatricians state my daughter had clear lungs. She did not present with the chest pain or blue lips and nail beds indicative of life-threatening pneumonia at any doctor visit. Records from her last medical exam on May 14 show Eliza Jane had no cough or respiratory congestion. A series of chest Xrays taken in the ER did not reveal why she was dying. After careful examination of her lungs during a May 18 autopsy, the coroner could not determine a cause of death.
One month and no determined cause later, the coroner's office called her primary pediatrician, Dr Paul Fleiss, demanding to know if he knew about my book and HIV status. Even after discovering my testing history and controversial work, it took 12 more weeks for the coroner to decide my daughter died of AIDs-related pneumonia.
We have questions and concerns about the coroner's findings and hope to clarify these via an independent investigation due in three weeks. Interested readers may follow the unfolding story at www.ejlovetour.com
Christine Maggiore
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My end of recent correspondence with LA Times Readers' Rep Jamie Gold (surely one of the most patient individuals on earth):
Hi Jamie,
Below please find a new revision of my letter. I've used a few more words to clarify the statements about my daughter's medical records and our experiences at the ER. To make up for this, I've cut out other sentences.
With regard to our conversation yesterday about the content of my daughter's medical records, could you please let me know if the Times actually has copies of these records? From my understanding, her records are not public information and the Times reporters cite from the autopsy report and interviews with her pediatricians. I think it's important to note that the coroner's office does not have my daughter's complete medical records. They never requested records from her last two doctor visits, and as such, this information is not included the autopsy report.
With regard to the Time's requirement of third party witnesses to events not attended by reporters, as I mentioned during our phone conversation yesterday, a neighbor who followed us to the ER can substantiate the experiences referred to in my letter. This man stayed there with me and my husband for several hours, including the awful moment when the attending physician at the ER apologetically stated they could not determine from x-rays, a spinal tap, CAT scans or other tests why our daughter was dying.
That and the following statement from the hospital report may be enough to settle our disagreement on whether the ER found no cause of death after examining a series of chest Xrays. The attending physician wrote: "I feel that [there] may be [a] rather high likelihood that the patient may have Haemophilus Influenza. Nevertheless, it is just speculation on my part at this point and the case will need to be referred to the coroner's office to help determine the cause of death."
If you will provide me with a fax number, I will send you my daughter's medical records from the pediatrician visits mentioned in the autopsy report along with the summary statement of the attending physician at the ER.
I would also appreciate knowing if either reporter disputing my account of events at the hospital ever interviewed the ER doctor before going to press. The timing of any interview concerns me as I doubt it would be possible to get an unbiased account of what happened that night with our story having been told from one perspective on the front page of the Times.
Regarding the Time's claim that the coroner's office does not disclose information by telephone, as I reiterated yesterday, Dr Changstri very kindly called my husband the week of our daughter's memorial in reply to his request for an update and explained that they still had not determined a cause of death for Eliza Jane. She also outlined what steps they were taking to investigate further. Her remarks about investigating poisions and chemical toxins as a potential cause was so disturbing to me, I immediately phoned a friend who works in law enforcement and told him what Dr Changstri said. He is available to verify our conversation about Dr Changstri's remarks if needed to substantiate the sentence summarizing this event.
Again with regard to the assertion the coroner's office does not share information by phone, Denise Bertone called our home on the morning of Tuesday September 13 and disclosed the coroner's determination of death to my husband. When I got the news from my devastated husband, I phoned our lawyer and reported what Denise had told us. I'm sure our attorney recalls this conversation.
Jamie, if the Times still wishes to disregard our experiences at the ER after considering the above mentioned information, will you please let me know as soon as possible? I'd also appreciate knowing if the Times still stands by the claim that the coroner's policy is no disclosure by phone. If so, can you help me understand how your reporters managed to write an article that included the coroner's determination of death before my daughter's autopsy report was finished? As I recall, Dan Costello contacted me for comment on his completed article Thursday September 15. Following his call, I phoned my attorney who spoke with him that same day. The autopsy report was not ready until Friday September 16; Denise Bertone called to confirm it was finally available as of that Friday morning. When I asked Dan if he had a copy of the autopsy report during our first contact, he said he did not, and stated the same again the week of September 19.
With heartfelt thanks for your patience and help (and kindness under duress),
Christine Maggiore
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