Sunday, September 11, 2016

Zika Part 2
Humans are Just Food Trucks for the Andes Aegypti Mosquito

Please stick with me readers. I know these Zika posts are a deep, wonky dive, but this faux crisis is just so emblematic of the problems of the politicizing and profiteering that corrupts many (most?) of our environmental and public heath issues that I just can't give this a quick pass over. It also concerns me deeply that I've found so much disinformation and bad analysis at each and every layer of this story. And I just can't get out of my mind the untold number of pregnant women who are needlessly having the bejesus scared out of them. 

Let’s quickly recap my last post: We should all be afraid, very, very afraid. The Zika virus is ravaging the Americas and leaving in its wake thousands of babies with profound birth defects – or maybe only hundreds – oh, wait, how are we defining microcephaly? Oh, never you mind! Despite being absolutely clueless for decades about what is causing autism and our current epidemic of allergies, asthma and a host of autoimmune diseases, after mere weeks the CDC is absolutely sure Zika causes microcephaly and other yet to be documented birth defects and needs our $$$$s STAT! In the meantime, we’re in an all-out war with the mosquito.

The headline in the Washington Post said it all - ‘Like it’s been nuked’: Millions of bees dead after South Carolina sprays for Zika mosquitoes. This was horrible news, even more so because of the poor health of bees and other pollinators in America due to the not yet well understood phenomenon of Colony Collapse Disorder. The US Department of Agriculture estimates that pollinator bees in America are worth $15 Billion dollars in crop production annually. Carelessly killing several million bees, as well as an unknown number of other pollinators such as wild bees, butterflies and moths, in addition to being tragic, is also a very expensive mistake. Moreover, the pesticide used in South Carolina, Naled, has actually been banned in many other countries because of its toxicity to humans -especially developing fetuses - and other living things.

However, according to the Center for Disease Control (CDC) and the National Institutes for Health (NIH) the stakes are high enough to warrant out-right panic over the Zika virus – and therefore, by extension, any reckless decision-making that comes along with it. The day before the article reporting the bee deaths, the Washington Post prominently featured an Op-Ed by our friends Tony Fauci of NIH and Tom Frieden, head of the CDC hyping the Zika Virus’ “unprecedented threat to the people of our nation, especially pregnant women” and decrying the lack of funding provided by Congress. How panicky should we be? These fine gentlemen are threatening to take some of the money previously destined for cancer research, HIV/AIDS programs, heart disease (the number one killer in America) and the CDC’s own sacred cow, the childhood vaccination program and re-direct those dollars toward fighting Zika.

This huge, unprecedented reprogramming of funds – and willingness to undertake poorly-planned aerial spraying with a pesticide with known toxicity – implies that a whole host of data is available about Zika, the disease’s transmission, mosquitoes, pesticides et al, and that the data is clear, unimpeachable and supports, in the strongest possible way, a myriad of decisions being made at the Federal, State and Local levels. Decisions which have serious and profound, personal, economic, environmental and public health impacts.

Undertaking aerial spraying implies many things, for example: that aerial spraying is the best way to fight the mosquitoes capable of spreading Zika; that those mosquitoes are actively spreading the disease; that there are many, many cases of Zika that we know are being spread by local mosquitoes; and that in the past we have seen similar mosquito-borne diseases spread quickly and dangerously through the population once they hit the mainland US.

Further, the emergency reprogramming of funds within the top public health organization in the US leads one to believe that the tests being used to confirm that these are really cases of Zika are reliable and widely available; the freak-out about this birth defect/Zika connection is warranted because we have irrefutable evidence of such; these birth defects are so devastating, and happen with such frequency that it warrants taking dollars from HIV/AIDs, heart disease and cancer programs and research; and finally, that researchers have successfully developed safe and effective vaccines for similar diseases.

Well, ummm, no, not really - on any of the above counts.

As I like to say – let’s unpack a few of these assumptions…..

Aerial spraying is an effective way to combat the mosquitoes thought to be spreading the Zika virus:

The Zika virus is being spread here in the U.S., Puerto Rico and elsewhere in Central and South America by the Ades Aegypti mosquito. As so elegantly put by an infectious disease and mosquito expert on the Diane Rehm show on August 3rd, the Ades Aegypti is “the Norway Rat” of mosquitoes (listen at 46:15). What exactly did Dr. Michael Osterholm, the director of the Center for Infectious Disease, Research and Policy at the University of Minnesota, mean by that? Simply put – we are these mosquitoes’ food trucks – they want to be where we are. That means in urban areas, near the ground. According to Dr. Osterholm, studies have found one of the places they love to hang out is in our closets (46:44). They are hanging out near our birdbaths and the kiddie toys in our backyards (46:35) – not near a semi-rural bee farm in South Carolina. So, absolutely “no” to the effectiveness on that aerial spraying (46:50)

But surely, spraying is effective in certain conditions? Like in the urban areas mentioned above? Well, no, not really according to Dr. Osterholm and Phil Goodman (another panelist on the same show who has spent decades fighting disease spreading mosquitoes in the Florida Keys) (31:50) As they said, the mosquitoes stay close to the ground. The spray falls on any number of things – including us, bees, butterflies, moths and our back yard gardens – before it would ever get to the mosquitoes. Not to mention that the life span of an infected mosquito is 8 to 10 days – that means every time you turn around there’s a new crop of mosquitoes in your back yard or closet. Getting on top of each generation of mosquitoes would require almost constantly bathing neighborhoods in pesticides that have proven neurotoxic effects on developing fetuses. (Remind me again, who are we supposedly protecting with all this spraying? Developing fetuses?)

In addition, one of the reasons Mr. Goodman of the Florida Keys is helping Miami-Dade County with mosquito control is because Miami-Dade doesn’t have much of a mosquito control program. Why? Because they don’t have much of a mosquito problem. Ocean breezes and winds pretty much keep them at bay (14:08).

On top of that, it turns out most of these mosquitoes have become rather immune to the stuff. Remember DDT? That wonder pesticide which was once deemed so safe, we were encouraged to cover our baby’s nursery with wall paper embedded with the stuff? Moms were encouraged to wipe down lunch boxes with it and children were actually SPRAYED with the stuff while eating lunch or swimming in the pool – really – watch this short, mind-blowing video. Well, DDT – which as we know has been deemed to very much NOT be safe - is a close cousin to the pesticides being used today on Andes Aegypti (yet we’re supposed to believe this new version of this pesticide is perfectly safe). It turns out all our spraying of DDT and related pesticides over the decades has led to current generations of mosquitoes who are pretty resistant – (13:13 and 33:50). In fact, by Dr. Osterholm’s assessment, the spraying does little whatsoever to control mosquitoes and is used mostly by municipalities to “look like they’re doing something.”(46:54) I’m SURE the bees and beekeepers appreciate that.....

So, does that mean GMO mosquitoes are the answer? Setting aside all questions about the pros and cons of releasing heretofore not well studied genetically modified organisms into our ecosystem and just looking at the effectiveness of such mosquitoes, if indeed, they could interrupt the Andes aegypti life cycle, Dr. Osterholm says “no” to that as well (41:20). The Andes Aegypti mosquitoes never venture more than 300 – 400 yards from where they hatched (41:24). Add that to their 8 to 10 day life span and you would, according to Dr. Osterholm, have to release GMO mosquitoes in a “carpet-like fashion” every 300 – 400 yards at least every two weeks to have any impact on the problem over many, many square miles. It is not, he says, “a high utility tool that would wipe out these mosquitoes.”(41:55)

Mosquitoes are actively spreading many cases of Zika on the US Mainland:

To keep everyone in panic mode, and Zika hysteria prominently featured in the press, the CDC and the NIH like to throw around big Zika infection numbers. But we have to ask ourselves: Are we hearing the relevant numbers in all those news reports? Probably not. When you hear a spokesman for either organization talking numbers, they are likely confounding many categories to make the number sound big. On any of the audio recordings or articles I link to on the post (including this one) Tom Friedan or Tony Fauci say we are closing in on 20,000 Zika infections in the US. Clearly, that is meant to scare you. What they don’t tell you – or at least don’t tell you right away - is that there are more than 14,000 cases in Puerto Rico, but just over 2,000 in the lower 48 (which is not to say that Puerto Rico isn't important, it just raises the question of why are we gearing up for a mainland assault on mosquitoes when the real problem is elsewhere?). What they almost always leave out is that the vast majority of those cases on the mainland are travel related – people have traveled to countries where Zika is actively being transmitted by mosquitoes and have come home infected. How many of the Zika cases on the mainland have been acquired by local mosquitoes? Well as I write this, forty-three  – yes, that’s right only 43 cases – all in Florida. What? How about the cases in South Carolina, where they felt they had no choice but to aerial spray and killed all the pollinators, surely they had many locally transmitted cases, yes? No. No, in South Carolina there are ZERO - yes, 0 documented cases of actively transmitted Zika infections. South Carolina has only had 43 cases of TRAVEL RELATED Zika – total – since April – but no locally transmitted cases at all……

We have every reason to believe Zika will spread rapidly throughout the US:

This one is really forehead slapping worthy. On August 26th Tom Frieden of the CDC did a Facebook Live interview with NY Times reporter Sabrina Tavernise, to really push two messages – first, Congress is being derelict in its duty – the CDC needs money NOW for vaccines, better testing and tons of research and secondly, we all should be very, very afraid as Zika related birth defects are certain to explode here in the US at any moment. He and the reporter start the interview dutifully sticking to the agreed upon message – money and panic, money and panic, money, vaccines and panic.

But then a funny thing happens. On a Facebook Live event the reporter isn’t the only one who gets to ask questions – the fine folks listening in on Facebook get to ask some questions too….. First, at -10:53 Frieden gets asked – why isn’t Zika exploding in the US? Oh, but it is, he says – in Puerto Rico! We should expect it to explode in Florida too he insists. Then someone asks – “Isn’t Zika very similar to dengue fever in many ways?” Aren’t they are similar in symptoms, mode of transmission and geographical pattern of outbreak? Well, yes. Next question. But wait, we’ve never really had a serious outbreak of dengue in the Continental US – why? Ummmm…. Frieden then has to admit that dengue hasn’t spread in the US in the past because we don’t really have all the conditions necessary here to facilitate such a widespread outbreak of dengue (-10:12)

WHAT?!? Well, it turns out that in Central and South America, the Caribbean and other areas where mosquito borne diseases such as dengue, chikungunya and Zika spread widely, it is in part because those areas have conditions conducive to said spreading. In these areas, the population density is much higher than in the US, there is very little air conditioning so everyone’s windows are open and few people even have screens on said windows allowing mosquitoes easy access to the human “food trucks.” These conditions, Frieden has to admit, don’t really exist in the US. Still, he tries to fan the flames of fear, pointing to a round of dengue infections in the Florida Keys a few years back that stuck around for a year before dying out and once again turning our attention to Puerto Rico. But a questioner brings up dengue again, towards the end of the Facebook session. In response, Frieden admits yes, “9 times out of 10” dengue has died out after a few clustered cases in the US (-3:27). But never mind that – what we really need to do is worry about that 1 time out of 10 when it doesn’t! It could happen with Zika! Yes, he says, usually you get a couple of dengue cases in a household or a workplace and it “hits a dead end”, but that time in the Florida Keys (and a little in Miami) – they saw 40 to 50 locally acquired cases of dengue over a year-long period! (In a population of over 2 million people…..-3:06) How far up the East Coast has dengue ventured in the past? (It has only been seen in Texas and Florida -2:15).

So, someone asks, the real issue is people coming home with infections from other countries? Well, yes. And the best way to avoid spreading the disease under those circumstances? Practice safe sex and wear bug spray for 3 weeks after you return so the local mosquitoes don’t pick up your infection – Wait, what? I’ve never heard that advice before - that sounds like a simple, inexpensive and effective way to fight Zika in the US (-2:00). Shouldn’t we be telling everyone coming home from a trip in an area with active Zika infections use bug spray? ….oops, never mind, can’t dwell on that. Time.Is.Up!  Tom Frieden’s World Fear-mongering Tour must move on.

To be continued…..where I will unpack some of the issues regarding the reliability and accuracy of the tests for Zika, the real likelihood of the development of a safe and effective vaccine and the strength of the “proof” that Zika causes birth defects. In the meantime, if you enjoyed watching Zika 101, here's Zika 201.

Tuesday, August 23, 2016

Zika Virus, Diane Rehm and the CDC

Be afraid, be very, very afraid – terrified even. Stay inside, bathe yourself in DEET, wear long sleeves, embrace GMO mosquitoes, don’t travel to South or Central America, especially not Brazil, or go to certain parts of Miami, or maybe avoid Miami altogether as well as Puerto Rico, and maybe the Caribbean. Don’t get pregnant for a year or maybe two, or have unprotected sex with your spouse for 6 months…….  But the Olympics – oh the Olympics in Rio, Brazil? Yeah! Be sure to go to the Olympics! But before you go, how about an extra $1.9 Billion for the CDC?!

Oh, the Zika virus – where to start? My Inner Angry Wonk has been simmering about this since day one (just ask my poor sister), but over the last couple of weeks I have hit the boiling point. On August 3rd, driving home from taking my youngest to Shakespeare Camp, listening to the Diane Rehm show on our local NPR station I was dismayed to hear them talking, yet again, about the latest CDC horror show known as the Zika virus. Among those on her panel that day were Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases at the National Institutes of Health, and Dr. Irina Burd, director of the Integrated Research Center for Fetal Medicine at Johns Hopkins University Hospital. In between all the pearl clutching and hand wringing over 15 Zika cases in Florida, they gave call-in advice to panicky mothers of small children living near those cases (listen at 18:55). To protect their very small babies, and infants as young as 2 months old, these doctors were recommending that these mothers keep their babies in long sleeves and long pants at all times and when taking them outside slather their exposed skin – i.e. their hands and faces with both sunscreen and a DEET containing insecticide – where it will undoubtedly wind up in their tiny mouths. Can you hear my Inner Wonk screaming?????

The CDC has been studying autism since the epidemic they refuse to acknowledge began almost 30 years ago - growing in incidence from 1 in 10,000 in the 1980's to the current rates of 1 in 68 over all, 1 in 42 boys and a shocking 1 in 28 in the children of Somalia immigrants living in and around Minneapolis. Yet despite the untold millions they have spent on research, the CDC remains stubbornly clueless about the causes of autism, not even certain if this dramatic increase in numbers represents a real rise or simply better counting and diagnosis (?!?!), and absurdly suggesting their best guess is that there is a strong genetic component in a condition that has increased exponentially in just one generation!?!. Nowhere on the CDC autism pages is it even entertained that maybe, just maybe there could be some sort of environmental factor involved – or maybe even factors…..

However, unlike the impenetrable mystery that is autism, a few short months into the current Zika outbreak and the apparent increase in microcephaly cases in Brazil, the CDC is certain – absolutely, completely, unequivocally certain – that Zika and Zika alone, is the sole cause of a profoundly devastating birth defect. A virus that has been around since at least the 1940’s (If not longer...Western medicine has a maddening tendency to equate their finding and naming something with the definitive starting point of said disease or condition….) that is so mild and harmless that 80% of the people who have had it didn’t actually notice, is suddenly harming fetuses, causing miscarriages and striking others with Guillame-Barre syndrome. However, despite their certainty, their pronouncement was remarkably, frustratingly, data light and only asks one question – could Zika cause birth defects? No other possibility is even entertained. In the paper the CDC itself actually admits there is no “smoking gun” linking the Zika virus to the cases of microcephaly. This lack of data has not, however, stopped the CDC from issuing a long list of unprecedented recommendations and advice – which the news media has gleefully, breathlessly. reported far and wide – impacting untold millions of people, many countries and communities with wide-ranging and significant - some might even say profound -personal and economic consequences. Not to mention that $1.9 Billion funding request and the burgeoning coffers of bug spray, GMO mosquito companies and vaccine developers.

How data light are we talking? Let’s start to break this sketchy story down.

First off, as I said above, there seems to be an apparent increase in microcephaly cases. To document an actual increase, what do you need first? You need a baseline - a “before” number. Well, pretty much every media report or article I cite in this series of posts is missing the before number. Why? Because Brazil apparently did not have a very well-documented “before” number. One of the very few news reports that I could find with a before count was an article in Nature which reports that the number of microcephaly cases recorded in Brazil in 2014 was 147 – a number, the article points out, so low as to be unbelievable given the number of microcephaly cases which occur annually worldwide (for example, approximately 25,000 babies are diagnosed with microcephaly every year in the US). The paper cited in the CDC report, used as the CDC basis for their "before" number, claims the number of microcephaly births in Brazil to average 157.3 cases per year from 2000 – 2014, also unrealistically low. So much for the "before" number.

Even as a skeptic, however, one cannot deny the existence of the heartbreaking pictures of the babies and sad, painful stories of mothers and fathers truly suffering in Brazil. They exist. They are hurting. They need help and services. And they deserve answers – truthful answers. Exactly how many babies and families are we talking about? Good question – that is another disquieting piece of this story. You would think if the CDC is telling every woman of child-bearing age in the Americas to panic, consider terminating pregnancies and demanding Congress come back in the middle of August recess in an election year to approve emergency funding, they would have a pretty good handle on this – but no, again.

The number of cases reported have varied wildly since the CDC and the press began hyping this story. In February 2016 the NY Times reported the numbers were upwards of 4,783. The Nature article from March 21st cites 6,398. The next day, in the Washington Post the number dipped much lower, maybe only 2,500. Then there was talk of how to “define” microcephaly.  Wait, what? There wasn't even an agreed upon definition of microcephaly to begin with? No, apparently not. In the beginning, Brazilian health authorities asked doctors to report a case of microcephaly when a newborn baby’s head measured 33 centimeters (cm) or smaller. Then it was decided that measurement was too inclusive and the number changed to 32 cm. Eventually Brazilian Health authorities adopted the World Health Organization’s (WHO) definition of microcephaly, with head measurements of 31.9 cm for newborn boys and 31.5 cm for girls.

Wait. What’s that you ask – we’re defining this devastating neurological deficient SOLELY on the measurement of a baby’s head circumference? No other physical characteristics? The muscle constrictions? Brain calcification? Eye disorders? An MRI or CT scan? No. It appears that, especially in the beginning, microcephaly cases in Brazil were being counted by head circumference alone. Here, National Geographic tries to make sense of the numbers in March - they are reporting 641 cases of “confirmed” microcephaly in Brazil. According to the article another 4,222 are being “investigated” and 1,046 cases have been “rejected” for not meeting the “criteria” although what that criteria consists of is not shared with us. I could not find a description of that criteria anywhere. Hmmm…..

All the news stories aimed at scaring the dollars – oops, I mean crap – out of us acknowledge that this Zika outbreak has been working its way around various parts of the world starting sometime in 2014, hitting the Pacific Islands near Guam and the Marshall Islands, Haiti and most of the Caribbean and pretty much all of the countries in Central and South America. If, indeed, Zika causes microcephaly, and various other disastrous outcomes, the virus should have left a trail of miscarriages, paralysis, death and profound disability across all these countries, right? Well, in a nutshell, not so much.

Try as they might, the CDC, the Washington Post and the NY Times have not been able to produce any real evidence of increased cases of any of these ills in any other country besides Brazil (begging the question, once again, what the heck has happened to investigative journalism???). 

Missing the numbers to convince you to be terrified, they’ve done their best to explain away the lack of data with a variety of excuses – most of them ridiculous and highly offensive to the population of the countries involved. Haiti? TheWashington Post says the residents there don’t go see doctors often enough for either fevers or childbirth and therefore Haitian mothers missed the fact that their babies were born horribly malformed and disabled. To the extent that they did notice? The physicians in Haiti and the wise reporters of the Washington Post speculate that their superstitious mothers interpreted their births as the work of “evil spirits” and left them somewhere to die. The doctors of French Polynesia and Yap? They just forgot to document women were giving birth to babies with tiny, unnatural looking heads – if you go back looking for them you can find a few – maybe an increase from 2 cases a year to 8 – and again, no other cause for such an increase has been explored (some of the sentences written in these articles have actually caused ME harm – smacking my forehead with my keyboard – how did someone write these things and how in the world did they think we would believe it????). And as Columbia announces Zika is on the way out, and we’ve hardly heard a peep about microcephaly cases there, the NY Times assures us that there are still six reasons we should still believe that Zika causes microcephaly.

So hey, better go ahead and slather that baby – and any pregnant woman you see – with both sunscreen and DEET, just in case (I can pretty much guarantee you that that safety study has not been done). But while driving and listening to the radio that day, My Inner Angry Wonk was at least relieved to hear Diane Rehm’s response to the DEET recommendation – she was horrified – she refuses to use DEET on herself she said – why in the world would she use it on a baby?? Both Dr. Fauci and Dr. Burd chastised her and insisted that it was safe to use, citing EPA “pesticide registration” as proof of safety. Hey, I worked for EPA, and I believe that a lot of good things get done there. But I would NEVER and I mean NEVER tell someone to forgo their own research, their own instincts, their own skepticism simply because the EPA said so. Decisions in big bureaucracies get made for many reasons, under various circumstances and you better believe that I’ve seen bad decisions made under both "big P" and "little p" political pressures and for other dubious reasons. Yay Diane!

But this disease is worth a lot of money for a lot of people. Maintaining the public's level of fear is important to the CDC. Imagine my disappointment, but not my surprise, when 2 days later, on her Friday News Round-up show, Diane Rehm revisited the issue (at 34:32). After talking with a caller from Miami about a different topic, Rehm used the caller’s location as a reason to launch another discussion of the Zika virus. She reminded people that she is going to Florida later this month. That two days before she had declared her worries about the safety of using DEET-containing insecticides and her life-long refusal to use it. Well, never mind, she said, Dr. Fauci had had another conversation with her and changed her mind. Zika is just too dangerous and the CDC just too important to ignore. She would, in fact be using DEET insecticides on her very person on her trip to Florida she declared. One of her panelist, Ruth Marcus, a columnist at the Washington Post, doubled down on this message. “This is very scary. Listening to Tony Fauci is one of my rules in life. Everyone should listen. Everyone should listen to the CDC.” Rehm chimed in – “Absolutely!”

That noise – that noise you hear along with the screaming – I need to go ice my forehead……

Next time…. But of course that test they are using is really accurate – right? (Until then, enjoy this video - Zika 101)

Tuesday, August 9, 2016

If They Start the Shots Early Enough Part 2…..
The Vitamin K Shot

As I said in earlier posts, there are moments that I look back on, where I read something that defied logic, heard something that made me suck in my breath, saw a report that made me slap my forehead. Things that in retrospect make me wish I had followed my gut and done more research – moments when I wish I had been able to figure out what was going so wrong. When I wish I had just grabbed my kid and run.

When my oldest was 10 and half years old, he fell off the high dive at the local High School pool, landing on the pool deck. His skull fracture and severe traumatic brain injury (TBI) almost killed him and left him in the Pediatric Intensive Care Unit (PICU) at Georgetown University Hospital in DC for a month. With no voluntary movement – he couldn’t even make his eyes track together - and dependent on both a feeding tube for nourishment and a trach tube for breathing, we left Georgetown by ambulance and headed to Kennedy Krieger Institute (KKI) in Baltimore to begin his very painful and arduous rehabilitation journey.

Our time in the PICU had made it abundantly clear – leaving a severely ill person in the hospital without an advocate 24/7 was to court disaster. At Georgetown we had been there continuously, along with my mom and sister and our son was never left without one or more of us in his room. But after 4 weeks, my husband needed to get back to work and be at home with our then 8 year old daughter, so moving forward we agreed I would live in our son’s room at KKI. Once installed there, I joined a cadre of amazing warrior moms. Smart and fearless, they were always a step or two ahead of the staff. Moms who knew their kids’ every medical issue, medication and treatment. Moms totally in tune with their children.

In addition to being a rehab hospital for those who had suffered a TBI or spinal cord injury, KKI has a feeding program. It’s a therapy program for kids who, for various medical reasons, have difficulty eating. Several of those moms had children with autism. And to a one, they told me their children had regressed into autism – losing speech, no longer making eye contact, losing motor skills. All these years later I remember their stories and how they worried me. Before our time at KKI, autism had barely registered on my radar. And to the extent I had any awareness of autism, it did not include regressive autism. What I don’t remember about those conversations is whether in their stories, did those mothers link their child’s regression to vaccinations? Whatever they told me, I am embarrassed to admit, it was not enough to prompt me to question vaccines for my third.

His birth may have been 10 years after our daughter’s, but sadly their birth stories are not all that different. Despite my insistence that I was ready to push, and despite my doctor’s many notes in my chart about my short pushing phase, my youngest was born after two pushes onto the birthing bed with only my husband and daughter in attendance. Instead of being by my side, our nurse was across the room with her back to us admonishing me and insisting that I was absolutely clueless about what stage of labor I was actually in and refusing to go wake the doctor at 4:11 am (lest you think I am misremembering this in some sort of birthing-room fog, we have photographic evidence to prove it!)

Like his sister he was serene at birth and had great Apgar scores and sadly, like his sister, I sent him off with his father for tests and whatever else the hospital had in store for him. When I first started writing this post about his vaccine injury I was certain it would be about his Hepatitis B shot like his sister. But it is back-to-school season and I was looking for his records. I was shocked to see he didn’t get Hep B until his 1 month checkup. So what did he get that first day that made us all miserable - the thing that started us down his road of vaccine injuries? His vitamin K shot…

But wait, you say, how could the vitamin K shot lead to vaccine damage – it’s not even a vaccine? The Vitamin K shot is just that – just some natural, straight up Vitamin K like you would get from the deep green leafy veggies that come weekly in your box from your organic Community Supported Agriculture – right? That’s certainly what I believed until recently. But no. Turns out the vitamin K shot not only contains 22,000 times the level of vitamin K that newborns are typically born with, it is not a natural version of vitamin K, it is a synthetic. The shot also contains aluminum, a known neurotoxin, polysorbate 80, a toxic chemical which has been proven to cause infertility in animals and propylene glycol, a chemical which is also used as a solvent in antifreeze, engine coolants, varnishes and the like. Really.

And if all of that isn’t horrifying enough, the vitamin K package inserts warn that it should be given subcutaneously (under the skin) or really bad things could happen – like anaphylaxis among other side effects. That’s because phytonadione, the synthetic vitamin K used in the injections, can cause allergic reactions and hasn’t really been studied for safety in pregnant women and babies. In fact, pregnant or nursing women are counseled not to take synthetic vitamin K as its effects on unborn or nursing babies are not known. It’s also not to be taken by anyone with compromised liver function (like maybe babies…..) or anyone known to be allergic to it (how would we know about a minutes old infant?) So, of course, you would think hospitals are super cautious and always take the time to deliver the injection subcutaneously…..but no, most of the links I cite within this blog suggest otherwise. My husband is certain our son received an intramuscular injection into his thigh.*

When my son and my husband returned to my room, my baby wasn’t howling in horrible pain as his sister had been, but he was cranky. Then he became so sleepy he was basically unresponsive. While his siblings had been eager, successful nursers, I could not rouse him enough to even try. I have since learned that sleepiness and deep unwakeable sleep are signs of a vaccine injury. When, the next day, he became so dehydrated he only had urine crystals in his diaper, the nurses absurdly started pressuring me to offer him a bottle – which I refused. If he wouldn’t/couldn’t wake to nurse, how/why in the world would a bottle be any different? My husband and I tried over and over to wake him with a cold wash cloth to the back of his neck and then on the soles of his feet and when that didn’t work we progressed unsuccessfully to ice. While my husband and I worried about his unresponsiveness and dehydration the nurses and doctors shrugged it off – some babies just found birth very tiring they claimed…..(???) It was more than week before he really woke up. In the meantime I went through excruciating engorgement as my milk came in on time for a baby who was perpetually, unresponsively, asleep.

Clueless to the possible reasons for his lethargy and totally unaware how many shots had been added to the infant vaccine schedule during the intervening 10 years, I was floored when at his 2 month checkup the nurses ambushed him with 4 shots – giving 2 in each thigh simultaneously - representing 6 vaccines. As I look back on his vaccine record and his ensuing medical and developmental issues I can now see that he either regressed, developed new medical issues, or both after every round of vaccinations.

The stories from the mother’s at KKI lurked in the back of my mind during this time, especially when I sensed a change in him after his 4 month vaccines – the same toxic onslaught he endured at his 2 month checkup. When I raised concerns with his pediatrician about autism (I wasn't even linking my worries to the vaccines - I was just worried about regression!) she poo-pooed my concerns – chalking it up not to real changes in my child, but to my maternal paranoia as traumatized mother. All those rumors swirling around about vaccines and autism? Nonsense she insisted! And I guess as a parent, analyst, proud bureaucrat, a political science major who completely believed in the integrity of journalism as the 4th estate, I just did not, could not, believe that all those parties involved would be willing to put so many lives in such horrible danger.

Then she said something that turns my stomach to this day - the whole regression thing she declared, was bogus. She had worked with autistic children during her residency and to a one, she insisted, the parents had just missed it. Mothers just didn’t realize their children never made eye contact, never pointed, didn’t speak. Their children simply had not really acquired the developmental skills - and then lost them - these mothers thought they had. I was speechless – like the wind had been knocked out of me. This was a doctor I had been with for years. She had cared for my twin nieces after they arrived fragile and tiny 8 weeks too soon. A doctor I really, really respected and trusted. I thought of all those warrior moms at KKI. Moms fighting for their kids and the skills and health they had lost. Those moms who missed NOTHING. Looking back, I just should have grabbed my kid and bolted. Instead, I stood there dumbstruck as the nurses descended with his 6 month vaccines…..

*All this begs the question – do babies really even need a super-infusion of any kind of vitamin K – synthetic, natural, injected or oral? Might nature have some reason for babies to naturally be born with low levels of vitamin K, since it seems to be universal the world over?  Don’t doctors – and Pharma – lecture loudly and often that buying vitamins and supplements for adults is a waste of time and money? Don’t they spend a great deal of time warning us all about the dangers of mega doses of vitamins? Some of the links here address some of those questions. I hope to cover this topic in a future post.

Monday, August 1, 2016

The EpiPen Bin,
Vaccines and Autism – Have I Lost My Mind?

My 3 year old, my youngest, appeared suddenly at my side, surprising me. I had just left him in front of the TV in the other room with a homemade watermelon, mango smoothie and permission to watch some Sponge Bob. “My throat is funny” he croaked and then he started gagging, vomiting and turning blue. Somehow I recognized that my previously allergy-free child was having an anaphylactic reaction. As I frantically dialed 911, I sent his 13 year old sister upstairs to get an EpiPen. All the EpiPens in the house were adult size and I worried about dosage, but what choice did I have – he had now collapsed and was gasping for breath. My brilliant daughter returned in seconds, with both an Epi-pen and a bottle of liquid Benadryl. I opened the bottle and just poured it into his mouth and held my breath. Miraculously, the effect was almost immediate – his breathing began to improve and by the time the EMTs arrived he was breathing without struggling and his blood oxygen levels were back to normal.

We headed off to the pedestrian’s office immediately for a check up and had an EpiPen Jr. by the end of the day. Add another “issue” to the list of illnesses and disabilities affecting my children I thought. As with all the other “issues” they battled – ADHD, auditory processing disorder, sensory integration disorder, auditory defensiveness, learning issues to name just a few - I chalked it up to genetics – somehow my husband + me = trouble. Many years ago, in the 1960’s, when my sister was diagnosed around age 3 with a myriad of food and environmental allergies it was a rare and unusual diagnosis. We were forever explaining to friends, family and schools that there were many things she couldn’t eat or be around. Many were dubious – they had never heard of anyone allergic to FOOD. Later on my mother developed many severe food allergies which made it nearly impossible to eat out and required constant dosing of allergy medicines, rounds of huge hives, headaches, stomach aches and vomiting. Even eating at a friend’s house was fraught with worry since few people believed or understood the reality and severity of her reactions.

Thus, when my youngest began Montessori pre-school later that year at the small program in the Methodist Church basement a few blocks from our house, I came bearing his EpiPen Jr, liquid Benadryl and an expectation that I would be spending some time explaining his issues. Our daughter and youngest son are 10 years apart in age. I had been vaguely aware of the increased acknowledgement of food allergies since my last stint in pre-school, but as with my kids’ other issues I assumed this was simply the wonderfulness of more Awareness! More Acceptance! It had not occurred to me what it really represented –More.Severe.Food.Allergies! As I walked up to the front desk, the Director looked up. “Oh, hello. Welcome to School. The EpiPen bin is right over there.” WTHeck?!?! My mouth dropped open – an EpiPen BIN. In a school this small?? No explanations needed?!?!? I called my husband on the way home – what in the world was going on??

Where were all these cases of severe food allergy coming from? How, in the 40 years since my sister’s diagnosis had things gotten dramatically worse, not better? When our pediatrician packed us off to see an Allergist I expected to find some advances in the science – if the problem was getting worse, researchers must have made some progress, right? I knew no one had found a cure for allergies, but there should be better treatment, better understanding of why this was happening – right? I was, however, sadly mistaken. My Inner Angry Wonk was appalled - I began reading everything I could about the growing epidemic of allergies.

Were you surprised to see vaccines linked to “the A word” in my returning blog post? Well – you and me both! As I explained then, when I stopped writing 4 years ago, it wasn’t because my Inner Wonk was any less angry. In the meantime, I was still shocked and dismayed by the amount of medical harm that had impacted my family and so many people I knew. As a policy analyst I struggled to understand how medicine in the U.S. could have moved so far away from evidenced based practices, become obsessed with searching for “cures”* and seemed completely disinterested in causation and prevention (or maybe it always has been that way and I just started noticing?) And despite all the money the U.S. spends on health care and health care research, everywhere I looked I saw new and growing chronic illness, life-threatening diseases, allergies and “issues”. I was (and am) determined to understand this better.

My personal research took on more urgency over the last few years as several diseases and missed diagnoses impacted my life deeply. First, my daughter was finally - after years of needless medical interventions and ridiculous diagnoses - successfully treated for Chronic Lyme disease and finally found healing for her life-long gut issues (variously diagnosed over the years as Irritable Bowel Syndrome, Crohn's Disease, and Ulcerative Colitis). Win to integrated medicine!

Next, I helplessly watched for years as my cousin and his wife fought to keep their son alive as he vomited (and diarrheaed) his way thru infanthood and toddlerhood. Eventually, he was diagnosed with both life-threatening food allergies and eosinophilic esophagitis - a severe autoimmune disease where eosinophils, white blood cells which normally protect the esophagus from germs and parasites, instead, in the presence of various foods and allergens attack the esophagus itself and cause chronic, debilitating inflammation. This means it is nearly impossible for their child to eat - essentially he's allergic to food – pretty much ALL food. He is now 8 and except for a few allowable treats gets all his nutrition via feeding tube. Just being in a room where eggs are being cooked can make him very sick. He can't sit down at big family gatherings and enjoy the food and fellowship that comes from cooking and eating together. School parties, field trips and Cub Scout projects involving food are off limits for him. It's something he and his family have to think about almost every minute of every day.

The last story is the saddest. My dear friend, a gifted medical doctor herself, developed seizures and then a severe autoimmune disease. My frantic research into the immune system and auto immune disease was too late to be of help to her. She died in December of 2014 at just 45 years old.

To be clear. Up until as recently as 2013, I was adamantly “pro-vaccine”. My kids are pretty much VaxXed up. Even as my research into the immune system, our microbiome, obesity and chronic disease, etc. kept pointing me toward the fact that any understanding of the science suggests that vaccines can never be either entirely safe or even reliably effective – I was incredibly reluctant to believe so, but the more I learned the less I could ignore...

*(Don’t get me wrong – cures are critically important for those of us currently suffering from disease, myself included and especially in the case of my cousin’s child. However, I cannot understand how we can find “cures” if we aren’t interested in understanding the causes of the disease – and preventing it. How can you fix something if you do not understand the mechanisms of how it came to be? And if our current model of medical care really cared about care, wouldn’t we all want fewer diagnoses in addition to early detection? Fewer rounds of chemo? Fewer cases of chronic pain? Less auto-immune disease? But then what would we do without all those wall-to-wall Pharma ads that now sponsor and pay for our sports, entertainment and, of course, our nightly news…..)

Wednesday, June 22, 2016

If They Start the Shots Early Enough……

you can’t figure out what damage has been done.

I had been in labor about 14 hours, the last 2 in the hospital. I was almost completely dilated, but my Ob-Gyn wanted to hurry me along. Without much warning she broke my water – catapulting me into the pushing phase. The impulse was so strong, my daughter was born in that very first push, resulting in some serious trauma to my body. As the doctor and nurses ran around frantically trying to control the bleeding, they were yelling at each other that maybe they needed to knock me out. In the midst of this, I held my daughter. Despite the chaos and my (somewhat) muffled cries of pain, she lifted her head from my chest and quietly looked into my eyes.

As they were jamming in IV’s, clamping delicate places and generally jostling me all around I began to worry that my daughter would bond with a screaming, scary version of myself – I was also beginning to  feel weak and was afraid I would drop her. I asked my husband to take her and while the nurses wanted to whisk the two of them off to the nursery for all the prodding they had in store for her, my husband refused to leave me or let her out of his sight. 

Once the bleeding was under control and repair work underway, my husband agreed to go with our daughter to the nursery. My recollection of the next few hours is hazy – having made it thru childbirth without pain medication I was now woozy on some cocktail needed to keep me from jumping off the bed while they sewed me up. The next thing I remember clearly, I was holding my daughter – my very unhappy, screaming daughter. No longer gazing at me silently, her eyes were squeezed shut, tears streaked her face, and the veins pulsed visibly on her forehead. Her tiny hands were clenched so hard her knuckles were white. She cried like that for a great deal of her entire first year of life. We were told that night and for months to come that this was simply “colic”.

What I didn’t know then, that I do know now, is that in 1991 hospitals across the country began giving all babies a Hepatitis B shot on their first day of life – usually within the first 12 hours. The CDC made that recommendation, despite the fact that Hep B is a blood borne, sexually transmitted disease most commonly found among IV drug users. They made that recommendation, despite the fact that mothers could be tested prior to delivery to determine whether they were Hep B positive – the only route by which their babies could become infected. They made that recommendation despite the fact that the vaccination’s safety for infants has been minimally tested. Despite the fact that the long term effects of the vaccine has never been studied. Despite the fact, that by their own calculations the vaccine’s effectiveness wanes after 7 years long before your baby will be sexually active or be tempted by IV drug use. And they have continued to make that recommendation, year after year, giving the same dosage shot to a baby – even an extremely tiny premature baby - as a 19 year old would get. Despite the fact that the US is the only country that vaccinates babies on their first day of life. Despite the fact that the Us also has the highest first day of life death rate – 50%  higher than the all the other industrialized countries combined…..Really. Read that again – it's true How can we not be outraged by this?! How is THIS not front page news?

The rest of her first year of life sounds like the stories of the autism parents I have read and listened to, here herehere and here. As with her brother before her, as dedicated environmentalists we started out using cloth diapers. The diarrhea and bloody diaper rash defeated us again. Then she developed a rare, fast growing tumor on her back which had to be removed by major surgery – twice. And then the endless ear infections started and of course the loads of antibiotics. She was on antibiotics pretty much continuously from the age of 6 months until her first birthday when we finally submitted to ear tube surgery in desperation. I do not remember how much Tylenol we used, but I am sure it was a fair amount. I know now that was the worst thing to do as acetaminophen seriously impairs the ability of the liver and kidneys to clear the body of the toxic ingredients she received in her vaccinations.

Like her older brother, she was very verbal, she was very bright, but she had sensory processing disorder, auditory processing issues, ADHD, learning issues and severe separation anxiety. She loved her teachers, but couldn’t relate to her peers. Every day, when she got home from school, I essentially re-taught her the day’s lessons. Each school year I thought we were headed to private school or to the school for kids with learning disabilities where my son was enrolled. She had things working in her favor - she was a girl, she was personable and pretty organized so teachers and administrators were willing to work with her. Plus, they had a few years under their belt with this new crop of vaccine injured students which began as children born in 1989 began entering public school systems.

The next part of the story is her’s to tell. It was filled with much illness. Hospitalizations. So many diagnostic tests. Many diagnoses. So.much.medication. Epic gastrointestinal issues. I honestly cannot think of a department at Children’s National Medical Center where we were not seen. She (and we) almost did not make it thru High School or College. Finally, my research pointed me toward Lyme disease. And while I was pretty sure she had it, it took much longer to find a doctor in our area who believed chronic Lyme was real. Her immune system dysregulation made her especially vulnerable. Damaged by the vaccines, the antibiotics, and the combination. Who knows for sure what this awful combination brought on since little real research is being done. Hardly any government researcher is even asking these question or looking for answers as our children get sicker and sicker – severe allergies, obesity, autoimmune diseases - some of which have NEVER been seen before - seizure disorders, ADHD, ADD, cancer, autism. How can we spend more on healthcare than the next 20 countries combined and still be so, so sick – getting sicker, in fact, every single year?!?

 Our Integrative Health Doctor treated our daughter’s Lyme disease. Healed her gut. Adjusted her body. Took her off gluten and artificial sweeteners. Pushed us toward organic and non-GMO food, grass fed protein, higher fat, lower carbs. Slowly but surely she got better. She graduated from college, got a great job, got married a year ago and started graduate school last fall. We are SO lucky……but we didn’t learn soon enough to spare our 3rd child from similar struggles…..

Tuesday, June 14, 2016

I'm Back

To my small handful of loyal followers....thanks for continuing to encourage me to get back to this despite my protracted absence. Four years ago, almost to the day, I talked to my dad about this blog - he had just read a draft of what would be my newest entry and he was so encouraging and excited. I had no way of knowing that just hours after I published that post on June 20th 2012, both my parents would be dead - killed at 11:00 in the morning by a teenager high on synthetic marijuana who had been out smoking and driving since the night before. Somehow, the writing became so difficult after that for me and until now I have been unable to take it on, but all this time my inner wonk remained angry and perplexed by the ever increasing rates of autoimmune diseases, allergies, learning disabilities, cancers, autism. Although not writing, I have been reading and researching voraciously (someday I will have to get back to fiction) and it has led me to some unusual - and very unconformable - places. Places that have often left me angry, frustrated and depressed. Some of the things I have to share you've probably heard bits of here and there and some may make you think I've gone a little off. Please don't jump to conclusions - stick with me and I will try to share what I've learned....

In February of 2010, I sat in the cavernous Barnes and Noble in Bethesda, MD. Author Judith Warner had one of her first readings for her new book We’ve Got Issues: Children and Parents in the Age of Medication. I was one of the mothers she had interviewed for the book. A mother whose kids had issues – a mother in the minority. And yet, as I looked around at the packed room, I wondered. As Judy began to talk about Sensory Processing Disorders I expected her to spend time explaining what it was. Twelve short years earlier, when I figured out that’s part of what plagued my kids, doctors didn’t even accept it as a legitimate diagnosis. I had to explain it to everyone – doctors, educators, family members, therapists. But, as Judy talked, all the moms around me nodded knowingly. They all had kids with Sensory Issues – what the heck was going on?!?

I am late to this party – this understanding that vaccines are ruining our children’s health and well-being - which I find a little ironic since the 2 oldest of my 3 vaccine injured children were born in those first years after the Vaccine Court Legislation passed in 1986 and the vaccine schedule took off. For years and years I believed our doctors and thought our struggles with colic, chronic ear infections, sensory integration dysfunction, language delays, motor delays, auditory processing disorder, learning issues, ADHD, allergies, and wrenching gut issues were unique to our family and therefore genetic – some horrible melding of our DNA that consigned our kids – and us as parents - to endless struggles for treatment, therapy and accommodations.

Recently my husband and I watched the documentary Vaxxed: From Cover- Up to Catastrophe about the CDC whistleblower and despite all our struggles over the past 27 years our first words to each other when we sat down in the car after the movie – “We are so lucky….it all could have been so much worse.” Which if you know our story is saying A LOT. (More on that later). Our path has been difficult, but it did not include autism.

Since seeing the movie I have spent a great deal of time reflecting on a number of things. How I missed the connection to our children’s health problems and disabilities to their vaccination. How I have traveled in such a short time from an extreme pro-vaccination stance – I totally bought into the Swine Flu “Pandemic” of 2009 and marched my entire extended family to get vaccinated and as recently as 2013 I insisted on annual flu vaccines for all to “protect” a family member fighting cancer – to my current realization that vaccines are neither safe nor effective.

That’s not to say I didn’t know SOMETHING was up. In fact, as I look back over these 27 years there are so many moments like the one when I was sitting in the Barnes and Noble, when it became clear to me that something was very, very wrong – not just with my kids, but many kids. The clarity of some of those moments is startling and brings such sadness…..

My oldest was born in 1989, when, unbeknownst to me, the vaccine schedule was exploding. (Even if I had, it wouldn’t have mattered – like so many I believed in my doctor and the “science”). I now know that 1989 is seen as the "gateway year"  when the onslaught of learning disabilities; ADHD, allergies, autoimmune disease and autism began. Like many autism stories I have since read or listened to, our son was born healthy with great Apgar scores, but unlike in regressive autism or seizure disorders, his vaccine damage was slow and hard to see. It started with the diarrhea and the horrible diaper rash – after his 4 month shots I think. My husband and I were idealistic Policy Analysts at the Environmental Protection Agency and we started out with a determination to use cloth diapers – it was not to be – his diarrhea and bloody diaper rash demanded disposables.

Despite being precocious and very verbal (thank goodness) our son was late to walk. And when he entered EPA daycare at 18 months we began to get the notes and requests for meetings that would be the hallmark of all school years to come – his teachers had never had a child like him. He was bright, but liked to spend a lot of time alone or with his teachers – he was not interested in his peers. He was very sensitive to textures and his clothes, hated loud noises, had poor impulse control….and the meltdowns….. I distinctly remember my sobbing after a meeting with his preschool teacher when he was 4 – he was so different, so difficult, gifted in some ways – yes - but she told us to temper our life expectations for him.

There were many of those. His first grade teacher who in desperation sent him to the principal’s office one afternoon because he was one of 4 (FOUR!) boys with serious issues in her class of 20 – he would wind up spending most of the remainder of the year and a good part of 2nd grade hanging out with the principal – who adored him, thank goodness. The 3rd grade (veteran) teacher who told me (actually screamed at me) at our first meeting that his behavior made her want to jump out the window and run away - in 25 years she had never had a kid like him.

Being a Mom, of course I wanted answers. In those pre-internet days it was not easy. But somewhere in there, with the help of other mothers looking for answers I figured out the sensory integration disorder, auditory defensiveness, auditory processing, ADHD. We found a Physical Therapist who recognized the disorders. We got into a school for kids with issues – a school that was gaining students with issues EVERY YEAR ……. and all around us family and friends’ children were acquiring diagnoses – learning disabilities, ADHD, severe allergies, asthma, autoimmune diseases – you name it – and autism. 

At first I marveled at the wonderfulness of the new awareness! The better diagnoses! The acceptance!  The therapies! So grateful! And then, as the numbers all around us multiplied, it started to scare me....what the heck was going on?!? The Policy Analyst (and proud bureaucrat) in me was alarmed - surely someone was feverishly researching this - the CDC? NIH? Yet, year after year - nothing. My Inner Wonk was getting the numbers got scarier and scarier - 1 in 150, 1 in 100, 1 in 68 - where there should be outrage and alarm, there was mostly silence.....

(Next, our daughter's story)

Wednesday, June 20, 2012

The Need for a Patient Advocate

What it's Really Like in the Hospital

            Did you know being admitted to the hospital is the 3rd leading cause of death in the US? I'm not making this up - 100,00 people die each year as the result of often simple medical mistakes and another 100,000 die from hospital acquired infections. Health care in this country is broken - so broken that we don't even realize how broken it is and it's broken in ways the media is ignoring - or is reluctant to cover because of the long reach of the medical industrial complex. The money and power behind our medical system means the world of doctors and hospitals has remained unbelievably unregulated. Think about it: we have detailed rules about how long a truck driver can be on the road, systems in place to carefully evaluate airplane crashes and detailed rules about ethics and government employees (my husband, Stuart, isn't supposed to accept as much as a cup of coffee from a government contractor) and yet a surgeon who's been awake for 48 hours can cut you open, operate on your heart or remove an organ. If he makes a mistake there isn't a system in place to evaluate what went wrong or how to ensure it doesn't happen again. And hospitals, doctors and Big Phamra are intertwined in incestuous and hidden ways.
            My interest and awareness of healthcare policy and healthcare research, like my interest in politics, has been around as long as I can remember. My car accident in 1992 and resulting chronic pain only heightened my awareness (but severely limited my physical capacity to aggressively pursue these interests) . Thus, when Jake sustained a severe traumatic brain injury (TBI) in 1999, I followed him into the ER with a great deal of concern and not just a little bit of wariness. From our first moments in the ER at one of the country's "best" hospitals we found we could not leave him alone for one second. We found that a loved one in an intensive care unit is more vulnerable and unprotected than an infant.
            Several weeks into our time at the Pediatric Intensive Care Unit (PICU), after several harrowing episodes where our presence (Stuart, my mom and my sister) and our insistence had saved Jake's life (see "Our Scary Time in the PICU" and a forth-coming post about his life-threatening blood clot), the doctor in charge of Jake's medical team called a meeting with our family - Stuart, me, my mom and dad, sister and brother-in-law.  We were informed that our 24 hour a day bedside oversight was making the nurses "nervous" and the doctor insisted we needed to be there less. 
            My Inner Wonk, of course, was furious. I informed the doctor that I had just read the results of an Institute ofMedicine Report estimating that 98,000 people a year die from simple, preventable medical mistakes. This hospital had already, right before our eyes almost killed our son - not once, not twice, but three times! There was NO WAY we were going anywhere and we made that clear. This was especially galling since in the meantime the doctors representing various specialties necessary for Jake's recovery repeatedly reported - thru nurses and residents, not in person of course - that they were way too busy to ever meet as a team to coordinate his care with each other - much less with the patient's family! It was clear to us - we were not the problem!
            This meeting with the doctor and much of our ordeal was recounted in a Washingtonian article about Jake. My friend Regina Holliday used that quote about the 100,000 deaths a year on the jacket she painted for me as part of her Walking Gallery. I proudly wore it for the first time April 27th to the premiere of the Discovery Channel special "Healthcare Tsunami: Bring Your Best Board." There I learned, much to my dismay, that no one has done a comprehensive assessment since the 1999 study, but most experts agree that is still a reasonable estimate. Do the math: since Jake was hospitalized in June 1999 approximately 1.3 MILLION people have died needlessly from easily preventable medical mistakes. The documentary then revels that IN ADDITION, another 100,000 die each year from hospital acquired infections! 200,000 people! - each year! year after year! Thus my contention - my rant - your average hair dresser is better regulated and has more oversight than your average doctor!
            Those numbers - 200,000 a year - 2.6 Million since 1999 - makes going into the hospital the third leading cause of death in the US! Really! - going into the hospital = 3rd leading cause of death! If you find that unbelievable - if you can't believe it - please, read those numbers again. If you still don't believe it - go here - listen to DennisQuaid tell you
            Many people helped us get through Jake's hospitalizations and the months and years of rehab after his release. As a way of "paying back"  - an attempt to make something positive out of our experiences - I began to put together hospital survival kits for friends and family who were going into the hospital. Over the years, as I heard one disheartening story after another of stupid, thoughtless medical mistakes I began to include a letter in my kit - a letter about the need for patient advocacy. Seeing the Healthcare Tsunami documentary and learning recently that a friend's father was going into the hospital prompted me to pull up my letter and update it. I want to share it with you so you can prepare someone you know before they go into the hospital - to give them a chance to not be one of the 200,000 this year.


Hospital Survival Pack
Dear Friend -

These days time in the hospital can be very chaotic and trying. The Discovery Channel documentaries on health care safety - "Chasing Zero" and "The Healthcare Tsunami: Bring Your Best Board" have highlighted that 100,000 people a year die from medical mistakes and another 100,000 die from hospital acquired infections. Those facts mean that being in a hospital is the 3rd leading cause of death in the United States! 

For the person who is the patient –  I want you to relax - your job is to get well and not worry – you don’t need to be in charge. For the person who isn't the patient - I don't want to scare you, but for far too many patients, their time in the U.S. medical system is disjointed and uncoordinated. This state of affairs requires that each patient has an advocate - an advocate who is there as much of the time as possible. 

As the advocate you ARE in charge and your job isn’t to worry, but to be vigilant  – in all situations – with doctors, nurses and any family member who is not being helpful. You need to know about everything that is supposed to happen, especially keeping on top of medications and allergies. You'll  need a notebook  to keep track of things and some paperclips so when a doctor gives you his or her card, you can attach it to the notebook with your notes about what his/her role is in the patient's care. (There can be more than one advocate, but that means taking and sharing  good notes is especially important!)

It is OK for the advocate to question doctor’s orders that don’t seem to make sense or don’t seem to be helping or working. It's OK to ask for clarification, explanations, follow-up and follow-through. Medical professionals know a lot, but they aren't necessarily smarter than you - they just studied something different in college - and they do not know or love your patient they way you do.

Before surgery, if the patient is offered an epidural for pain management post-op consider it skeptically and discuss with your surgeon. When I was in pre-op for surgery in 2009 at John Hopkins Hospital, the anesthesiologist came to talk to us and brought up the epidural thing out of the blue. She lead us to believe that my surgeon was recommending it given my chronic pain issues. We tried to find my surgeon or her resident, but no one knew where they were. The pre-op nurse and the anesthesiologist pushed us to make the decision, again presenting it as my surgeon's idea. By the time my surgeon showed up the epidural was already in and she was clearly not happy - but the anesthesiologist was pleased since she'd scored an extra procedure - we felt like we were in the middle of a bad episode of "Grey's Anatomy"!

Other reasons epidurals aren't always great for after surgery pain:  An epidural has to be swapped out after surgery and replaced with either pain pills or a pain medicine pump and the nurse, doctor or resident  who takes out the epidural  is never the same as the nurse or resident who sets up the pain medicine pump so there is always a window when you're not covered on the pain med front (this happened to me ). Secondly, the epidural site will hurt (sometimes a lot) for a couple days afterward and leave you wondering about the trade-off in pain. (My grandfather who was paralyzed from the waist down from a falling accident many years ago and who was really tough when it came to pain, complained bitterly, for several days about the residual pain from an epidural site.)

In our experience, things for the patient fall apart in the window after surgery, when the nurses are supposed to take over from the recovery room nurses the post-operative pain issues. No matter what the doctor says, no matter what the nurse says, no matter what the patient says, DO NOT leave the hospital until at least the first round of post-op pain medicine is given and has been in for a few hours. Many times the first dose is of something makes the patient throw up or doesn’t work and the nurses on the floor can be really slow to address that. Once the pain gets out of control it is really hard to get it beaten back. For the same reason, make sure the nurse is on time with the next dose. Many hospitals allow them a window of 60 to 90 minutes past when a drug is due, to get around to giving it – that can really be a disaster – track her down and insist it comes sooner.

With that delay in mind: If the patient has the option of a pain medicine pump, it can be a good choice since the patient will  have less of the ups and downs of pain as pills take effect or wear off and  the bag of liquid pain meds lasts longer than the pills, so there are fewer opportunities for your dosage to get behind. The patient will be told she can push as often as she likes, but the machine will actually only allow doses at set intervals.

Thing to know: if the patient does the pump thing and only pushes the pump at the set interval (and not closer together) the doctor will assume your pain is under control - without asking! Medical protocol insists that if the patient is in pain, she will push the pump more often, even when  she knows pushing more frequently is futile! (Really, we had a big argument with doctors about this at another of the country's "best" hospitals.

Unfortunately, the role of the advocate requires being a bit of a pain-in-the-xxx. To soften this with the hospital staff, be as respectful as possible while still being really insistent. Being very knowledgeable about your patient's condition and treatment plan goes a long way. So think about simple acts of kindness. Bringing an extra cup of coffee, share a snack or a treat, show up with dark chocolate toward the end of a shift. You can also take over a bit of patient care to lessen their burdens. My mom, who trained as a nurse earlier in life, did Jake's sponge baths while he was in the ICU. Stuart took over Jake's nightly baths later on when we moved to the rehab hospital. And among other things, I learned to change out Jake's trach tube as required twice a week. When we took the time to get to know them, nurses began to choose us for their shifts and coincidentally they tended to be the best nurses on the floor (I think they were less put off by us). This allowed them to really get to know Jake and his care plan which was great for many reasons (we even helped one nurse get over her lifelong fear of dogs - her boys thanked us before we left!)

Finally, if one of your primary advocates/caregivers has health issues themselves, think about enlisting the help of a high school or college age niece, nephew or grandchild to help. An extra pair of young legs can really help and younger energy can also lift spirits. When I was 14 I was my grandpa's helper for a number of weeks while my grandma was in the hospital. In addition to carrying things, getting coffee, reading maps, I read the newspaper to my grandma and kept her up to date with current events. 

 Here’s what I've put in your hospital bag and why:
1.                Some kind of rich skin lotion and lip balm: for both patient and advocate – hospital air is nasty dry
2.                Eye pillow & eye shade: Again for patient and advocate. Hospitals are really noisy and bright and you may find it hard to nap when the opportunity arises. Someone gave me an eye pillow when I was sleeping in Jake’s room for 5 months– it changed my life.
3.                Ear plugs: See above
4.                Quarters and dollar bills: for advocate’s use of vending machines (I've found some big hospitals now have machines that take $5 bills or credit cards, but not always.)
5.                Massage lotion & oils:  For patient. Even when you hurt so much you don’t think you could stand to have anyone touch you, take it from someone with way too much experience in this, sometimes a simple foot rub or hand massage or leg rub can really change how you feel – really. And giving a hand or foot massage to the patient could give a family member or good friend something to do and make them feel useful.
6.                Additionally, extra massage oil/lotion if the patient will have some physical therapy it can be really helpful. With Jake I was surprised how much massage the PT’s used before starting movement and I was surprised they didn’t have massage lotion around – they just used regular lotion which doesn't work well for that. When I started bringing massage lotion, they really appreciated it, as did Jake.
7.                The notebook, paperclips and pens/pencils (I love ultra-fine sharpies because they can also be used to mark personal items if needed and if you get a couple colors then you can doodle too)
8.                An extra sweater or light blanket for advocate - hospitals for reasons I've yet to figure out are often crazy cold - especially ERs!? If you're really prone to be cold or the patient is, pack some of those instant heat packs that you can stick on under your clothes - they sell them at CVS, etc, but are much cheaper at Costco.
9.                Following are things that you should add - Cell phone - no research has ever shown cell phones interfere with hospital equipment so don't worry if you have one with you and it's on. Most hospitals have given up on a ban and will let you use them in most areas. Even if they don't you can probably get away with texting.
10.          A 3x5 card (or computer print-out on card-stock because you will be referring to it frequently and it will fall apart otherwise) list of the patient's pre-hospital medications and doses. It might be helpful to also write down what they're for. You will think that once you give the hospital this list on intake that they will know - but because hospitals have resisted making records electronic and because you will be seeing a parade of health care professionals, none of whom is in charge of keeping  care coordinated, you will be asked this question repeatedly.
11.          If one of the family caregiver/advocates also requires several medications a list like the one described above is also helpful. It's also important for caregiver/advocates to bring several doses of their own medication, because often you wind up staying at the hospital longer than you anticipate.
12.          Anything else the caregiver/advocate may need to keep themselves going, whether it is a Sudoku puzzle or a high-protein snack.