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Medical Forum / Diseases and Disorders / AIDS / October 2005

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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

---

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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