September 24, 2005

Yes, I guess I was bored

I got into the AIDS debate with Dean again. I know, I know, I really shouldn't, but this one pissed me off.

The argument is based on this article from the LA Times detailing the death of Eliza Jane Scovill, the 3 year old daughter of a well known "HIV does not cause AIDS" activist mother. EJ was conceived, carried, and breast-fed by an HIV positive mother who was not on medication and because of her beliefs, refused to have either EJ or her brother Charlie tested for HIV.

EJ's death was recently ruled by the LA county coroner's office to be due to "AIDS-related pneumonia".

This pissed me off on so many levels: the parents, the doctors, and the article.

1. The kid was sick with a cold and then an ear infection that got worse for over two weeks from the first peds visit until her death

2. Given her well documented risk, why did NONE of the 3 doctors who examined her even think to give her antibiotics or take a culture swab to see what was causing her symptoms? They knew mom was HIV+ and she was at risk (according to the article)

3. The second doctor suspected an ear infection but never gave her drugs, the third doctor FINALLY gave her an antibiotic the day before she died. I'm no fan of over medicating, but in a case where a kid (or an adult) is at risk of being severely immunocompromised, you do a swab and then use a drug that kills whatever you found. It's too easy for something relatively innocuous to take hold in someone who is already defenseless. I know from experience.

3.5 What about the drug they gave her? The article says she was vomiting severely the day after starting the amoxicillin. Was she having a reaction? Amox and the other cillins and some derivatives make me break out, vomit, or both. Did her reaction (if any) to the drug contribute to her death? Was she too sick before starting the drug to overcome any effects of a reaction? Did a drug reaction weaken her to the point that she could no longer fight the illness?

4. I don't appreciate anyone (this girl's mother) who equates "small apartments on busy streets, extended day care, and oscar mayer lunchables" with neglect. Just because not all parents can AFFORD to stay home and give their kids organic vegetables doesn't make their kids any less special than yours or make you any less neglectful and selfish. I'd rather VACCINATE my babies (which this mom didn't), make sure I knew what ALL their health issues were, and give them junk food than be so deep in denial that I can't face the fact that it might have killed my baby and let the doctors take the blame.

UPDATE: Dean points out in the comments that not all vaccines are safe and effective. I actually agree with him, but I had forgotten about the "new" vaccines, which I utterly disagree with: chicken pox, pneumonia, and ear infection. The long-term safety of these vaccines is clearly unknown as they are less than 10 years old, and the effectiveness of them is also in question, as a large chunk of kids who get these vaccines still get sick when exposed....

5. Where's the HIV test? They say she died of AIDS related pneumonia, but there was no mention of them even doing an HIV test. I know there are some legal issues with reporting someone's HIV status, but I assume the parents would want the truth to be told, since they say that they still believe HIV doesn't cause AIDS.

I guess what gets me here is the disconnect and the denial. On the part of the parents AND the doctors. Look, I respect your right to parent as you see fit, including whether or not you find out about your kids HIV status if they are at risk. However, that doesn't give you the right to act imprudently. Based on ALL the evidence out there, HIV is clearly linked to AIDS, and MOST LIKELY causes AIDS. If your child is at risk of being HIV+ and you choose not to find out, for whatever reason, then you have to be aware that when that child gets sick, it could spiral out of control quickly, as it may have in this case. If you choose not to vaccinate your child, you have to be aware of the risks that go along with that and the risks that your children import to other people because they have not been vaccinated. If you choose to avoid antibiotics, then you need to be aware that your child can die just as quickly from a bacterial infection as from a car accident. It can happen that fast.

In this case, prudence dicated an aggressive treatment strategy. One that should have started by determining what bacteria/virus/fungus was causing the symptoms, instead of looking, guessing, and sending the kid home. More than once. It took two weeks before she was given anything other than "naturopathic remedies"(link)

And what of the reporting? Surely the author of the 5 page LA Times article was intelligent enough to ask the questions I've raised. Especially with regard to the HIV testing. That's clearly relevant here. Perhaps the journalist wouldn't know enough about the possible side effects and reactions to amoxicillin, but a simple Google search would have sufficed. Also, the journalist doesn't appear to have enough healthy criticism of the doctors. While the writer allows Dr. Gordon to second-guess himself, Dr. Fleiss is paraded out as the pediatrician to the stars, notorious and controversial, but well established. Little criticism of the treatment strategy of any of the doctors is offered, except by unnamed, uncredentialed "experts". While it is likely that the little girl died of HIV related symptoms, no direct evidence to support this is presented except the single conclusion of the coroner.

I am flabbergasted by the ignorance and denial among educated people. By all accounts this was a healthy, active, intelligent child who should not have fallen so fast. Something was missed. Whether or not it was AIDS remains to be seen (where's the test??), but clearly there was more going on here than meets the eye.

Posted by caltechgirl at September 24, 2005 11:18 PM | TrackBack
Comments

I of course am known for being highly skeptical of the science behind claims that HIV causes AIDS. That entirely aside, I agree with most of your assessments. Some moderate exceptions:

1) SOME vaccines are admitted to be of questionable value, and all are known to have dangers (yes all of them, and people who don't know this are fools). Parents should make informed choices on those issues; there are some vaccinations our sons have, and some they do not, based on our informed choices as parents, and our doctors respect our choices on that. (Polio yes, chicken pox no, just for example.)

2) I'm not going to condemn anything a mother still grieving only a few months after her three year old infant's death says that doesn't make sense. Whether she was a full-time stay-at-home mom or not obviously doesn't matter though.

3) I am utterly flabbergasted, as are you, that the reporters could go an entire five pages in this article without ever once asking after the child's HIV status. Is it impossible to run such a test on a dead child?

4) Not revealed, but what I recently found out, was that about a year ago Eliza Jana had chicken pox, and got through it just fine in short order just like most young kids do. The article omits that, but otherwise acknowledges that the child's health records were excellent before just a couple of weeks before her very sudden death. So if her immune system was compromised, it as only in the last year, and apparently, not even visible until she got a runny nose 15 days before she died.

5) One of the known--rare but known--side effects of amoxicillin is that it causes severe, occasionally fatal, respiratory reactions. The kid had a low-grade fever and an earache for God's sake, and within 24 hours of being put on amoxicillin went into severe pulmonary seizure. How is THAT not worth asking some pointed questions about?

Posted by: Dean Esmay at September 25, 2005 01:44 AM

Wow, I had no idea this debate over whether or not HIV causes AIDS even existed. Anyways, here's a little more bang for the HIV does cause AIDS evidence:

http://www.niaid.nih.gov/publications/hivaids/12.htm

Which includes the studies of three healthy lab workers who accidentally exposed themselves to HIV and got AIDS.

Posted by: Random Caltech Amuni at September 25, 2005 05:07 PM

This pissed me off on so many levels: the parents, the doctors, and the article.

1. The kid was sick with a cold and then an ear infection that got worse for over two weeks from the first peds visit until her death.

Why would this fact piss you off on any level? With the exception of the death of the child, a cold progressing to an ear infection happens all the time.

2. Given her well documented risk, why did NONE of the 3 doctors who examined her even think to give her antibiotics or take a culture swab to see what was causing her symptoms? They knew mom was HIV+ and she was at risk (according to the article)

Do a google on antibiotics and ear infections. You'll find a plethora of articles encouraging doctors NOT to use antibiotics as the first line of attack for an ear infection. Research shows that most ear infections clear on their own. I've worked in a lab for 30 years. Ear cultures are rarely done. Only indicated when an infection doesn't respond to standard antibiotic treatment. I don't see any reason why the doctor needed to treat EJ any diferent than any other child. It wasn't as if he was suddenly seeing a bunch of unusual or alarming symptoms in the child consistent with an immunocompromised child. By all accounts she was a relatively healthy kid that had a typical cold and a typical ear infection.


3. The second doctor suspected an ear infection but never gave her drugs, the third doctor FINALLY gave her an antibiotic the day before she died. I'm no fan of over medicating, but in a case where a kid (or an adult) is at risk of being severely immunocompromised, you do a swab and then use a drug that kills whatever you found. It's too easy for something relatively innocuous to take hold in someone who is already defenseless. I know from experience.

See above.Alos, what is your evidence that this child was "defenseless"? According to Dean she had a typical case of chicken pox with a typical recovery a year earlier. I read nothing that indicated she showed any signs of being susceptible to a host of infectious diseases. Perhaps I'd agree with you if she had a history of frequent OI's. She had none as far as I can tell.

3.5 What about the drug they gave her? The article says she was vomiting severely the day after starting the amoxicillin. Was she having a reaction? Amox and the other cillins and some derivatives make me break out, vomit, or both. Did her reaction (if any) to the drug contribute to her death? Was she too sick before starting the drug to overcome any effects of a reaction? Did a drug reaction weaken her to the point that she could no longer fight the illness?
My theory is that the antibiotic may have induced vomiting and she may have aspirated. It fits a lot more with the case history than PCP pneumonia. No where in the published story is there any mention of labored breathing. I've yet to see a case of pediatric pneumonia where the kid wasn't breathing fast and shallow. A normal O2 sat is not consistent with pneumonia.

4. I don't appreciate anyone (this girl's mother) who equates "small apartments on busy streets, extended day care, and oscar mayer lunchables" with neglect. Just because not all parents can AFFORD to stay home and give their kids organic vegetables doesn't make their kids any less special than yours or make you any less neglectful and selfish. I'd rather VACCINATE my babies (which this mom didn't), make sure I knew what ALL their health issues were, and give them junk food than be so deep in denial that I can't face the fact that it might have killed my baby and let the doctors take the blame.
No comment on parenting methods, I doubt very much that many people would approve of mine. I assume you don't have children yet. My advice to you is to be careful of your apparent confidence in modern medicine. After thirty years in the business I am absolutely convinced that less is more. Iatrogenic illness is fast becoming a leading cause of morbidity and mortality in this country. The more exposure you have to it the more likely you are to suffer harm. Just do a quick assessment of the people you know. How many do you know that have been misdiagnosed? Had a bad reaction to a prescribed drug? Been subjected to unnecessary tests? Had a false positive or negative result? Had a treatment failure? A screening scare? A disease missed by a screening test? I could go on.
Modern medicine is capable of truly amazing things, it is also capable of doing much harm. I admire Christine for taking responsibility for her health decisions and the health decisions of her children. She may or may not have made the right decisions, but she absolutely has the right to weigh the evidence for herself and make them. I know plenty of dead people who followed every doctors order to the letter. I don't suppose you'd blame the doctor for their death, so why be so hard on this mother? Because she didn't make the same choices you would have? Just for arguments sake, how would you feel if she did follow all the mainstream advice and EJ spent 3 years of her life getting poked and tested and taking medicines that made her feel sick all the time and she was in and out of the hospital and she dies slowly of liver disease at 5 or 10 instead of suddenly at 3? Would you condemn her decision then?

Posted by: maggiemay at September 26, 2005 06:14 PM

Clearly we disagree and you think it's fun to be petty. Check your email.

Posted by: caltechgirl at September 26, 2005 11:24 PM

...why be so hard on this mother?

Because the child is dead, most likely because of her crazy New Age views on disease, food, and medication. If you're going to take every conceivable risk in the way you raise your children, you'd better be ready for some criticism when reality slaps you in the face.

It's interesting that Dean and the other HIV deniers are now trying to blame the death on a drug reaction, just as they try and blame AIDS deaths on AZT. The drug reaction theory doesn't fly for two reasons: 1) cillin allergies don't manifest on first use; and 2) cillin allergies manifest in minutes after ingestion, not a couple of days later.

It's also interesting that they question the diagnosis of AIDS-related pneumonia on the basis of an HIV test that any responsible parent would have given the child in advance.

This is a very sad story, made sadder still by these parents' continuing denial about the dangers their lifestyle poses for their other child.

Posted by: Richard Bennett at October 4, 2005 12:15 PM