AIDS News
Dean
On May 26, Christine Maggiore and Robin Scovill let me know that their daughter Eliza Jane had died on May 15. According to them, the girl developed a fever and an earache, and after a couple of days of this her pediatrician put her on an antibiotic. Less than 24 hours after that, the girl suddenly had a seizure and died of cardio-respiratory failure. To me it sounded an awful lot like an acute reaction to the antibiotic, especially because apparently the kid had never been on antibiotics before.
I assumed that when this became public knowledge a sh*tstorm of accusations would start that the child had died of AIDS, even though everyone who'd ever met the kid or seen her, including her pediatrician, said she was healthy and normal. I figured it would be best to wait until the medical examiner's office issued a report. I assumed that if Maggiore and Scovill were lying, and the child had been sickly or evincing any AIDS symptoms, we'd find that out in due order.
Today I found out the medical examiner's report says that a cause of the kid's death is "aids-related pneumonia," at least according to the LA Times, which gives precious few details, some of them contradictory.
I'll be contacting the family and looking into getting a copy of the medical examiner's report, and asking a few basic questions, such as "what is that diagnosis based on?" Did the child have any AIDS symptoms whatsoever? The LA Times story is rather obscurantist on all these Journalism 101 questions.
Of course it's possible the parents have been lying and covering up and if so I hope they're punished. But based on both what I know of these people, and people I know who know them, I'm rather doubtful. I'll have more to say when I know more. In the meantime, journalist Liam Scheff has more to say that's worth reading.
Anyone know how to go about getting a coroner's report?
* Update * Molecular biologist and former scientific editor of Nature Biotechnology Harvey Bialy writes in:
The story in the LA Times is distortion of the worst sort. The article clearly states the infant died of "AIDS related pneumonia". Unless someone is diagnosed with AIDS, there is NO such thing. Maggiore's child never received an AIDS diagnosis, therefore the entire article is based on propaganda. Big surprise.I don't know if I'd call it propaganda, but I'm not surprised that questions a 16 year old reporter for a school newspaper should ask apparently aren't being asked by the LA Times.
* Update * As you can see in the trackbacks, a fulminating bully named Richard has called Christine Maggiore a murderer and accused me of helping her, and of "suppressing" the story (as if I'm even capable of that). He also froths about being banned from Dean's World, knowing full well that he was banned for slanderous and dishonest behavior, not for disagreeing with me. I find myself wondering if he or others like him ever think of Valerie Emerson's daughter, or about any of these kids. No, I doubt it. Christine Maggiore's little girl is dead, and anyone who questions whether it was HIV is a murderer and a liar. Whatever.
In the meantime, as I've mentioned in the comments, I'm trying to get ahold of the actual medical report on the girl rather than relying on the LA Times' half-assed reporting. I've been waiting to write about this until I could get that report because I figured this would be the reaction in some quarters.
Who in hell lets their kid stay that sick that long?
Furthermore, there's no way in hell I would ever consider feeding a kid Oscar Mayer Lunchables to be a form of "neglect". Maybe not vaccinating your kids, but not junk food.
Also, a question for you and the estimable Dr. B, Dean, if AIDS is caused by malnutrition and drug use, how did this little girl, who clearly was neither (since her mom wouldn't even feed her lunchmeat, only "homegrown vegetables") die of AIDS-related pneumonia?
Explain what details you found to be contradictory. I didn't find any. Some omissions, perhaps, but no frank contradictions.
I'm sorry these people lost their little girl, but more than the doctors are responsible here.
Furthermore, where in the literature on HIV is it supportable that a perfectly healthy three and a half year old child can suddenly develop AIDS and die in 11 days?
Listen, I know antibiotics are good, but they kill people every year either due to allergy or other reaction--which is why many parents are reluctant to use them unless a child is profoundly ill.
So, what is the justification for saying the drug was not implicated here? Or something else? What is the evidence? We are presented none, and basic questions need to be asked.
I have no idea what the child's diet has to do with any of this. I don't approve of vegetarianism but that's neither here nor there.
If you can find me in the case-literature for support of that as an "AIDS death" I'd really like to see it. Otherwise, it looks to me--from here--that the medical examiner just did a rubber-stamp, "mother is HIV+, kid died of AIDS" diagnosis. (Hell, half the time all you need is a fever and diarrhea to get that as your postmortem, at least if you're black and live in Africa.), and that the establishment here has found someone with a bullseye on them and are blasting away for all they're worth.
But we won't know more until we see the report, will we? Or is this LA Times story enough for you?
I agree that we have very little evidence that the drug or something else did not contribute to her death, that's one of the omissions I referred to. Severe vomiting after 1-2 days of amoxicillin is certainly within the realm of a drug reaction, and I wondered about that. I say this not as a practitioner, but as a patient (I have severe reactions to all of the "cillin" derivatives myself).
As far as the one doctor who did not treat EJ who is directly quoted is concerned, perhaps he exaggerates a little, but he makes a valid point that if the girl was treated more aggressively from the onset of her illness, she would have had a better chance. This point is reinforced by the other experts who postulate that if the girl was known to be at risk, she should have been treated more aggressively from the outset, including more tests to determine whether she was suffering a bacterial or viral infection.
From the article, it doesn't seem as if ANY cultures were taken until after the little girl died. It doesn't take much to take a swab of mucus to try to determine what's causing the infection and therefore what they should treat it with. That in and of itself might have saved her life.
The article, and the path report, don't claim that she went from healthy to full-blown AIDS in 11 days. Or 15, depending on how you do the math. The simple fact is that EJ was never tested for any markers of AIDS. Although she appeared to be a healthy, normal child, we simply do not know how long she was really sick, how compromised her immune system was throughout her life, or what events led to the development of the pneumonia, because these things weren't monitored. I think its specious to claim that she went from 0 to AIDS in 11 days based on the dearth of evidence.
On the other hand, she could have gotten the pneumonia through a totally unrelated immunodeficiency (the cold and ear infection) and it just blew up on her, as it does in so many once they start showing symptoms.
And I never said it was an AIDS death. And yes, I am willing to accept the CORONER'S REPORT of death due to AIDS-related pneumonia. Which I know full well you can get with out having AIDS.
I didn't see anything in the article about an HIV test, either, and I'm wondering why that was. It should have been done at autopsy, and certainly the results are relevant.
Did Dr. B read the article, or does he think 3 year olds are infants? I know he thinks I am.
The article clearly states that child welfare caseworkers noted that the children were well-cared for and that the parents clearly had their interests in mind at all times.
It does seem that Maggiore and her physicians may have gone too far into the realm of "alternative medicine," getting into things like vegetarianism and avoiding all vaccinations. Those aren't choices I agree with, although I understand why some people make them. There are some vaccinations we won't allow for our children, and some we will, for example--and vaccinations kill children every year, as I'm sure you know.
If all my kid had was a runny nose, and no fever and nothing else apparently wrong, I'd probably wait a few days before consulting his pediatrician. If my child became cranky and developed a fever, I'd take him in. I'd probably approve the antibiotics right away but I'd understand why others wouldn't. Once the earache showed up, I'd definitely go with the antibiotics.
Which, except for consulting a doctor earlier, appears to be pretty much what Maggiore and Scovill did.
Dean,
As you and your many readers know, I occasionally allow my emotions on this topic to get the better of precision (although not often). Albeit that Eliza Jane was never diagnosed with AIDS while she was alive (nor ever tested for HIV antibodies), I suppose it is possible that a zealous medical examiner performed sufficient tests on the post-mortem blood to find an antibody or pcr unit or three that could be put on the form, and on that basis reach the dubious conclusion of an 'AIDS-related' anything as being "a" cause of death. But without the report itself....¿quien sabe?
Additionally, I have it on good authority that the medical report lists the 'AIDS related pneumonia' as "A" cause of death, not "the" cause of death, which would be another medical first for the most mysteriously deadly virus ever. But in this instance the difference between the definite and indefinite article is more than usually significant.
All the above simply highlights the need for this document on which such a potentially actionable story was based to be made public.
Until then, we should all shut up.
As for getting the kid to the doctor, I agree with you that I probably would have waited a couple of days to watch it, but maybe I feel like they should have known that because she was at risk, they should have looked deeper. They DID take her to the doctor. Dr. Gordon said he suspected an ear infection early on. Why didn't he treat her then, or at least do a swab?
As for the comment on other kids--I'd let that go. She gave up a career to be a full-time mom and give everything she could to her kids and she feels cheated. People who grieve a loss go through all kinds of things--anger, resentment, denial, bargaining with God, all that shit. I wouldn't have even put that in the story myself. It hasn't got anything to do with anything.
While rare, acute respiratory reactions that can be deadly are one of the known side effects. Which, amongst other things, is why some people are reluctant to put their kids on antibiotics unless they're obviously quite ill.
Again, this is stuff a high school newspaper reporter--well, a smart one--should know to ask about. Zero, zippo, nada, anywhere in this story.
Mind you, maybe the report will tell us that they were able to rule that out, that the kid was HIV+, that she had other symptoms that hadn't shown up before, etc. I just can't trust the LA Times as a reliable source here. Not when they've been shown to get so much else wrong on so many political issues (and anyone who thinks this isn't a political disease is nuts).
It would be just like the Times to leave out the contributions of a severe allergic reaction, which would have weakened EJ to the point that she couldn't fight the pneumonia and then it killed her.
That's definitely a serious omission, as I said before.
In all things medical - it comes down to this.
Given that there are known risk/benefits to any medical intervention, it comes down to an individual's informed consent whether or not one wishes to accept or deny such intervention. No one should be pilloried for the decisions they make since the outcome is always uncertain and individuals hold differing values and risk tolerances. What I find untenable is the fact that when one rejects a medical intervention and the outcome is negative they are treated as dangerous fools. When one accepts a medical intervention and the outcome is negative the medical establishment gets a pass. "Well, they did the best they could, they tried."or "these things happen"or "rare complication". When one rejects a medical intervention and the outcome is positive - they "got lucky". When one accepts a medical intervention and the outcome is positive - the doctors "saved lives".
Neither I nor anyone else reading these silly articles knows what killed EJ. Perhaps, even the pathologists don't really know. The larger issue is does society have the right to dictate the medical decisions a parent makes for a child? Do they have a right to take away the parents decision making capacity for the sake of the child? Should a parent that does not hold the same view of a risk/benefit analysis as their pediatrician suffer the invasion of CPS into their lives because their decision does not conform to the physician's recommendation?
I dread the mere thought of any of my kids coming down with a severe illness. I just know I would butt heads with the doctors over their care. I butt heads with my OB/GYN doctors before they were even born. They get very upset when you start to question the necessity and utility of their practices on a case by case basis. I made one OB cry because I refused a TB test. (I had one 6 mo earlier and there were a whopping 18 cases of it in my state that year- all in distant cities)"You HAVE to have one." Uhh- "no I don't". You should have seen how upset they got when I absolutely refused to let them give my 18hour old infant a Hepatitis B shot. Yet they all admitted that she was not "at risk" for Hep B and there was no proof that she would maintain protection by the time she might actually find herself at risk. They don't like to be tied into knots. They don't like it when you question the sanity of established "policy".
If they're lying, they're very bad people.
I only found out last night that the report had finally been released and made public, but I'm going to look into getting a copy if possible.
TIA
From the LA Times article:
The first hint that Eliza Jane was ill came at the end of April, when she developed a runny nose with yellow mucus, Maggiore told a coroner's investigator.
On April 30, Maggiore took her daughter to a pediatrician covering for Fleiss. That doctor found the girl had clear lungs, no fever and adequate oxygen levels, the coroner's report said.
Hmmm. No apparent dyspnea, no fever, presence of mucous. The coronor's own report is inconsistent with PCP at the very least.
As such, it really can't be used as a reliable source for determining what happened to the girl.
Who in hell lets their kid stay that sick that long?
Am I misreading something? I thought it I read that she was all over the kid's illness. Why would you jump on the Mom - what did she do that any other Mom wouldn't have?
Sounds to me like she didn't let her kid stay sick that long without doing anything.
Also, it implied that before the antibiotics, the kid was improving. If that child had any pneumonia, how'd a doctor miss it. Most can diagnose it just by listening to the chest and an x-ray confirms it. But any experienced physician can "hear" it in the lungs.
I do know that it's not particularly unusual for pneumonia to set in after improvement in the initial infection. Whether or not it's plausible for Incao to have missed it probably depends on how thoroughly he examined her - if he was just visiting from Denver it might have been a casual thing. Presumably the child still had symptoms of something, otherwise Maggiore wouldn't have kept getting doctors to look at her, and the story doesn't say what exactly was going on at that point.
However, it's not as though pneumonia is necessarily AIDS related. My son had it twice last winter. I'd really like to know what made the coroner dub it AIDS-related.
Just taking the kid to the Ped's office isn't a magic bullet that makes the illness go away.
I don't know how most pediatricians act, but I will say that two weeks is not an extreme amount of time for a child to be sick, nor is recommending a wait-and-see approach all that unusual for my ped at least. 'Developing new symptoms in the absense of treatment' wouldn't particularly worry me if the symptoms themselves weren't worrisome. A child's viral illness can start out with a runny nose, the child might run a fever a few days later, and it might turn into a cougha few days after that. I'd definitely have taken my child to the pediatrician during the course of it, and if a week had gone by and there was no improvement I'd be concerned, but if we're talking about a regular kid-illness set of symptoms like that, only 20-20 hindsight makes DEMANDING the doctors test for EVERYTHING remotely reasonable under normal circumstances. I guarantee that you could look on the kid-related message boards out there and find a dozen similar stories that have an uneventful happy ending.
Doctors and parents have had it drummed into them over the last few decade or so that antibiotics are to be used only when it's medically indicated, not as a just-in-case measure (it's not even clear how useful they are for ear infections). If I went to my ped every time my child had a runny nose and fever and DEMANDED tests and antibiotics lest my child drop dead, they'd treat me like a nut and for good reason.
Again, this is all under normal circumstances. Taking into account that the child might have HIV makes a difference. I've never lived with an immunocompromised person so I don't know how such things are approached, but I suspect antibiotics are much more likely to be given on a prophylactic basis, and stronger ones to boot, so if whatever killed her was the kind of infection that only attacks people with poor immune systems, the parents AND doctors are at fault for not treating her properly. I'm just saying that it's not accurate to suggest that *any* responsible parent would be in panic mode after a couple of weeks of illness.
I've got a note in to Scovill and Maggiore asking them questions. I expect an answer within reasonable time.
This was a three and a half year old child who except for a bout of everyday childhood chicken pox, which she got through utterly normally a year or so prior, and had no signs of any sickness other than that except recently developing the sniffles and a low-grade fever. If anyone wants to say that's typical for HIV I'd really like to see them support it with the literature.
I understand perfectly well why someone wouldn't want to have their kid tested for HIV--I'd never consent to such a test myself--but I would agree that swab tests to look for specific bacterial infections would simply be prudent.
Of course, we are presuming here that no swab tests were done.
Richard Bennett, whom I've begun to think of as "Foamy the Clown," says amoxicillin doesn't cause fatal respiratory reactions. The Mayo Clinic disagrees with him, noting quite clearly that an anaphylactic reaction, causing airways to become restricted and rapid drop in blood pressure, characterized by wheezing, dizziness, loss of consciousness, and sometimes death--usually in frighteningly short order, as little as hours--is a known reaction to all the penicillin family of drugs. But I doubt that'll penetrate through all the foam spewing out of Foamy's lips and circling around his head.
Your parents never let you be sick that long? What, did they do magic to cure you?
I'd think a parent was irresponsible for letting a child be ill for two weeks without checking with a doctor. If the parent had checked with multiple doctors within those two weeks and had been told repeatedly that nothing serious was going on, in most cases that would mean that nothing serious was going on.
Here's a snip from www.askdrsears.com (a popular site run by a conventional doctor) describing a scenario that is 'well within the boundaries of what can be expected during the course of the common cold':
"Your child starts off with a clear runny nose for a few days, and then she begins coughing slightly. Over the next few days the nose turns from clear, to white, to yellow, then to green. She can't breathe through her nose. The cough worsens and starts to wake her up at night. About 5 to 7 days into the illness her cough begins to sound junky, you hear some rattling in her chest, and she gets a fever. She may complain of sore throat, headache and stomach ache at this time. The fever lasts for 3 to 5 days yet is seldom higher than 102º. The fever then goes away, but the green nose and junky cough continue. Between 5-7 days the nose starts to seem less thick and green, but the junky cough continues. Over the next week, the nose clears up more, the cough improves slightly, but she still has episodes of junky cough off and on. After about three weeks into the illness the cough quiets down and eventually goes away by four weeks."
That's a cold in little kids sometimes. If you can't take watching a kid snuffle and grumble for two weeks, I suggest you never assume care of one between December and March (our Hideous Virus months for the last two years). I could go in there and bang my fist on my doctor's desk all day and all night and it's not going to cure my son's colds any faster. I take him, of course, and almost invariably they tell me it's a virus and he'll get better on his own, and he does. A couple of times they've recommended antibiotics, based on specific symptoms, and I'm glad that treatment is available, but I sure as hell don't expect it for every cold, his or mine.
I mean, am I missing something here? Are you spotting some telltale symptom that should have tipped a parent off that something serious was going on? The two symptoms mentioned in the LA Times article are a runny nose and fluid in the eardrum. Are you really suggesting that every parent who has a child with these symptoms ought to be demanding extensive testing or expect fatal consequences?
That's the only "telltale symptom" I'm aware of. Although as I've said, I'm attempting to get a copy of the records made public.
In other words, a person never having been exposed to the drug penicillin or its derivatives can develop allergic reactions if previously exposed to environmental sources.
And response to oral medications may be less obvious initially, take longer yet be equally severe in outcome.
How that applies to a three year old, I'm not sure. Even if it wasn't an allergic response, penicillin can sure mess up intestinal flora.
I support the notion that Mr. Bennett doesn't have all his oars in the water on these issues.
I have a strong--very strong--reaction to erythromycin. I'm not at all allergic to it, at least according to my doctors. My system just won't tolerate it, as it causes projectile vomiting within 10-15 minutes.
but apparently pulmonary edema (pneumonia) does.
On the other hand, I know of no known allergy to erythromycin. Its primary default seems to be ineffectiveness.
These little complaints get rarer and rarer every year as the kids now have nicely primed immune systems equipped to ward off whatever ails them. Can't remember the last time a little bugger was more than a passing annoyance to anyone in the family.
Antibiotics? Only 1 out of three kids 11,9,8 has ever had them and that's because she was visiting her hypochondriac aunt at the time.
I believe in some quarters its referred to as jewish penicillin.
Or:
Did you hear the story about the lady whose husband died. She goes to the synagogue and the Rabbi is orating about the Mrs's late departed husband. Every few minutes she says: "so give'm chicken soup."
After about twenty minutes, the Rabbi interrupts:
"Lady, your husband has passed on, get over it."
She says:
"So give'm chicken soup it can't hurt anything."
For those that do not get it, I apologize for the interruption.
See also Antibiotics 2005: An Update.
It begins to appear that the LA Times is guilty of a hit piece here. Or rank stupidity, take your pick.
They're just taking about how everybody connected "feels" about a mysterious death. They don't want to delve too deeply into the medical details, because that would be "taking sides".
And they aren't terribly interested in AIDS the way you are.
Yeah right. It's just me.
So this girl went from 0 to AIDS in 15 days. Right?
Since all we have here is speculation, I'll posit this possibility that "fits" the sudden collapse of the child.
It's possible that the vomiting presumably caused by the antibiotic caused some aspiration of vomitous, possibly induced a laryngeal spasm and cardiac arrest. It fits more with the description of the collapse of the child than so sudden arrest due to pneumonia. What I find curious in the accounts is the lack of any evidence of labored or fast breathing which would be expected in pneumonia. Obstruction of the airway would also lead to pulmonary edema which could be mistaken for pneumonia (I suppose) post-mortem.
Also, from my readings, the presence PCP in post mortem lung tissue does not necessarily mean it was pathogenic. I would have to read the path report as there are very specific pathological signs of PCP pneumonia post-mortem that are distinctively different from obstructive edema.
"So this girl went from 0 to AIDS in 15 days. Right?"
Beats me. My point is that the paper doesn't want to ask that. Too deep and too contraversial. It wants to just say "he says this, she says that, he says this...."
You parent as you see fit, I'll do it my way. Just thank your lucky stars you've never have anything serious to deal with. And if the pediatrician ever calls me a nut for wanting to know what's wrong with my kid, I'll be damn sure to let you know personally.
The one thing I was waiting for when I read the story was a confirmation that:
1. The coroner found presence of the actual HIV in the girl.
Because, pneumonia has been around for a million years. AIDS-related pneumonia has been around for only 24 years, but clinically, there's no distinction (that I can see).
If there is no presence of HIV, there is no AIDS. If there is no AIDS, there is no AIDS-related pneumonia. If there is no AIDS-related pneumonia, there is no story.
I didn't see anywere in the article that HIV, the actual virus, was detected.
I'm not saying HIV will not be detected, but it seems like shoddy journalism to run with such a provocative, sensationalist story, without providing this basic fact.
Regardless, these folks lost a child, so our hearts and minds need to be with them.
Barnes, Hank
If treatment shortens the duration of a cold, what's the treatment and what's the evidence? Can you point me to recommendations from any medical body for treatment for common respiratory infections that go beyond the pallative?
I'm glad you've never been sick for two weeks, but taking your personal experience and extrapolating it to everyone is not evidence-based medicine, as I'm sure you know. You may associate the fact you've never been sick for that long with whatever treatment you're accustomed to getting, but the evidence is no more with you than it is with the people who think their homeopathic cold remedies are shortening their colds. There just isn't any evidence that treating colds alters their course. If you believe that personal experience trumps the research, you're pretty much endorsing Maggiore's approach.
Suggesting that most people ought to assume after two weeks of mild illness with repeated medical checks that they have a potentially lethal infection is just silly. Yes, sometimes people with seemingly innocuous symptoms die quickly, as in the famous case of Jim Henson. That doesn't mean that everyone with innocuous symptoms should be clapped into the hospital just in case.
Also, you should note that I didn't say they'd call you a nut; I said they'd treat you like a nut. The distinction makes a difference, because you might not be as aware of altered treatment as you would be of a direct challenge to your judgement.
Even if you accept the prevailing wisdom on HIV, you have to have some evidence of immune suppresion other than a cold.
Also, for someone that commented about chicken pox killing someone HIV positive, my friend that has been positive for over 20 years came down with chicken pox last year. He came out of it fine. Of course, he needed close doctor supervision.
I was about to make several points with regard to Eliza Jane's death, but you made some of them for me--like what happens to children who are given the "life-saving" drugs. Most disturbing is the degree to which CPS and the medical establishment can direct the care of children with perfectly adequate parents.
One thing we really need to consider is the "HIV" test, which has no gold standard. The very fact that Christine Maggiore tested positive, indeterminate and negative should tell us something about the validity of this test. Christine is not some "nut" who has always questioned this--it was her own experience in trying to get through to conventional AIDS groups that led her to further investigation and the ultimate publication of her book.
I will proudly admit that I am now a dissident who questions the HIV/AIDs paradigm. I myself was diagnosed with "AIDS'related pneumonia" (PCP) four years ago, along with testing positive. This whole thing is such a mess of circular definitions that to this day I'm not sure which came first.
I spent four years on the "meds" until I almost accidentally happened upon my first dissident site. I read voraciously until all my questions were answered, and got off those drugs pronto! I only hope it wasn't too late. I've been off for 4 months now and am coping with some detox issues but feel really great.
I will answer any questions anyone has, but do not feel it's appropriate in this thread.