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…..)