Thursday, August 17, 2017

Vaccinations

A note before we begin : I'm not a doctor, but doctors don't always give you the fullest and best information. As I discuss my journey with learning about and making decisions on vaccines, I am going to give you some excellent information. I will be sourcing the American Academy of Pediatrics, The World Health Organization, and The Center for Disease Control. In America, the AAP and the CDC are the ultimate resources, you cannot find information that is more respected or used outside of those sources. Worldwide, the CDC and the WHO are the most respected health organization that set the standard for governmental policies of public health. Any other source I provide should be compared against the WHO or the CDC. So while I'm not a doctor, and you should probably run your thoughts by your own doctor, I will be giving you the most reputable resources. HOWEVER, you should not use this blog post as a medical resource. This is just my experience and journey to coming to the decisions I made that felt right for myself, my husband, and my child.

Vaccinations are QUITE the issue in America, right? Whether or not you've had kids, you've probably heard about the Anti-Vaccination Movement, maybe seen a lot of judgment on anti-vaxxers, read about the Disneyland Measles Outbreak, read about Jenny McCarthy, heard that some people think vaccines are linked to autism, and of course, heard that all of those people who choose not to vaccinate for whatever reason are just crazy...and not always protected by law anymore.

Despite this large body of work about those who oppose vaccines, for any number of reasons, the fact of the matter is, there isn't good or thorough information on vaccines that is easy to find. For starters, the immunization home page for the AAP, CDC, and WHO are complicated and hard to read, full of tons of links. Most of these links, if followed, lead to more links, and many of the sites include FAQs that say the same thing over and over, vaccines are safe because they are safe. However, if you're not great with a Google search, you might not even find the sites of the AAP, CDC, and WHO. Instead you might find vaccines.gov, which gives VERY little information, no links, and no clues on how to find better information. You might find procon.org, which is unbiased and not really helpful. Or you might stumble on any manner of blogs or forums written by parents or doctors, many of which SEEM, reputable, but aren't. If you've never taken a class on how to verify a source, you might not know what sources are reputable and what sources are not. You might trust anyone with Dr. before his or her name or any mom blogger of any of the many parenting sites out there, ESPECIALLY if they include links to what seem like reputable sources. It's only with very direct and specific search terms that you might stumble on the AAP's helpful FAQ, but what if that STILL leaves you with questions?

Yesterday, I had an appointment with a pediatrician whom I was considering using as my pediatrician. I had already met him and his colleagues in a largely useless and overwhelming meet and greet (and yes, I'll have a blog post on choosing a pediatrician up at some point). Nevertheless, he stood out as communicating well. He seemed thoughtful, like he listened to me, and I liked him. Plus, he's one of the doctors that works with the Cleveland Clinic Center for Autism, so I thought that he had the skills to communicate effectively with me. In my first meeting, I told all of the doctors why I was there; because I have autism and I have differing needs from most parents. He knew this about me and he remembered me when he sat down with me a second time.

I had been going through the ringer on vaccines. I found one article on the history of vaccines that clarified a lot of thoughts and made me feel perfectly fine about every vaccine I had ever received. The history was there, the evidence was clear, the evidence of what happens when people choose not to vaccinate is abundant in our news media outlets, and the length of time using these vaccines with great success made it easy for me to understand them and why they were beneficial. Nevertheless, I had some questions about three vaccines for which I could not find adequate answers. What I had found was a lot of scare tactics about how, if you don't do the vaccinations at the recommended time, you ARE RISKING THE DEATH OF YOUR CHILD. Scare tactics and circular logic don't work for me, they motivate me to find out more. So I met with this doctor, armed with a folder full of the research I had done, ready to take notes, and several questions regarding vaccinations and the routine visits mandated by the schedule provided for me from his office.

What transpired was not an educated conversation that alleviated my worries. Instead, I was lectured, yelled at, and treated very badly. First, the receptionist attempted to make me meet everyone, despite my telling her I had and despite my telling her I was there to see one doctor. She started with the, "just so you know," kiss of death for every customer service person. (NEVER say those words. It makes you sound condescending and like your entire goal is to provide customer disservice.) I had to walk away from her. Then the doctor answered my first question with an edict that assured I would never see him again, "I don't care if you're a pediatrician, if I am providing care for your child..." No thanks, dude. The meeting further deteriorated into him practically shouting, "But what if you're WRONG and your child DIES!? Also, no thanks, and not helpful. He provided the same pro-vaccination rhetoric you can find EVERYWHERE online, "Well, so what? What is the harm in giving vaccinations?" And he didn't care about my response to that. Then, things got really bad. He said (this is not a direct quote) :


He asserted that should I continue to waste this much time and energy on thorough research, essentially nitpicking every aspect of every decision I would ever make for my child, not only was I definitely wasting time and energy, but I was doing so at the detriment of my child. That, in fact, it is bad parenting to do research and ask questions and I would be neglecting all of the special time and bonding I could have in building a relationship with my child.


Yes, the dude told me that doing this research, setting up this interview, and asking these questions MADE ME A BAD PARENT. Clearly, I would not be using him.

(I would like to note, that he ended the meeting by giving me the number of a Cleveland Clinic immunologist who could answer my in depth questions about the rates of infection and complication and mortality for the diseases in question. He also apologized for losing his temper, AFTER I had made him aware that this was how I operated and this is how I would proceed with care. He did compliment me for being so thorough. However, some apologies, no matter how immediate, are too little too late for me. I can't use someone who would bring me to tears in his office because he was offended that I asked legitimate questions and because he was incapable of maintaining his temper when pressed for the actual answers to the questions I asked, instead of spewing more rhetoric that is easily found online.)

Maybe you've figured out by now, but I am not easily deterred by mistreatment. In fact, the more names you call me, the more likely I am to go find the exact information I wanted to be secure in the knowledge that I was asking the right questions and getting the right information.


So, between bouts of crying at being called a bad parent when all I was trying to do was get information from a professional, I did another four hours of research last night and was able to find the definitive information I wanted.


The problem with the conversation regarding vaccinations, is that it's not a conversation. There is a definite script and the only line is, "What kind of idiot are you who wants to argue the safety and efficacy of vaccines because you are clearly a neglectful and stupid parent, SO JUST TAKE THE FUCKING VACCINES AND SHUT THE HELL UP!"

As I was doing all of my research and asking all my questions, even Adam threw out the "anti-vaxxer" term. I knew how much he judged them, 'cause I follow him on Facebook. I also knew that Adam was swayed by "public health concerns," that never fucking swayed me. My brain is not wired to give a shit about your problems, because that is an illogical solution. It is logical for me to care for myself and, maybe, it is logical for me to extend my help to someone else, but it is not logical for me to be concerned with your health, well-being, and safety. I know, that's not a very "American" sentiment (or is it the most American?) and it's not popular, but it's true. This is just how my brain is wired. You can't argue with it, and I really, really can't change it. I'm wired differently, that's all. So when Adam threw out that term, I scolded hum for his judgment and he couched it with, "but you're educated," implying these other parents aren't. The problem, though, is not that these other parents aren't educated. The problem is twofold, 1. The conversation is NOT OK and is ALWAYS met with condescension and judgment and 2. The most accurate and thorough information from the best resources, is either hard to find, hard to decipher, or both. So parents CANNOT get the accurate information from pediatricians who go on and on with "vaccines are safe because they are safe and DON'T YOU CARE ABOUT THE HEALTH OF YOUR CHILD!???" Meanwhile, the internet is a massive hay stack with a tiny needle of truth buried in there somewhere. Many people are not equipped with the same wherewithal with which I am equipped and many parents aren't as adept or determined at research as I am.

When you put these things together, you have parents who are not comfortable with the information they receive and are trying to make the best decision they can despite the judgment...which, by the way, often leads them to get together in groups of like-minded individuals where misinformation spreads like the measles at Disneyland.

Furthermore, if you're like me, you're looking at vaccinations like this : I was vaccinated more than my mom who contracted some of the illnesses I was vaccinated against and she did just fine. My child will be vaccinated more than me, and I contracted some of the illnesses that he or she won't contract, and I did just fine. Or maybe even, My mom and I were never vaccinated against these things, never contracted these infections, and neither did anyone else we know. Not everyone is talking to the same generation, and it can be hard to understand why EVEN MORE vaccinations are needed. (Y'all, it's a fucking lot of vaccinations now.)


What I'm saying is, The information is cloudy and the resources are super fucking judgy.


So last night, before I cried myself to sleep over being called a bad parent for just wanting to find the answers I needed to make sure I was making decisions with the ALL of the best information available, I found the CDC Pinkbook.

OH MY GOSH, WHAT AN AMAZING RESOURCE THAT SHOULD BE MADE AVAILABLE TO EVERYONE WHO CAN READ!!!!!!!!

My personal issues were regarding the Hib and PVC vaccines. These vaccines are meant to prevent infection from bacteria that can cause meningitis and epiglottis, which are INCREDIBLY DANGEROUS COMPLICATIONS from these infections. But the problem is, the information I found was like, "The PVC vaccine prevents the number one cause of ear infections...and also meningitis which leads to deafness, paralysis, and DEATH". Like, whoa, we went from ear infections (which my brother had a ton of) to DEATH? I mean, I never even had one ear infection. Adam and I both managed not to die from ear infections. Like, what is this vaccine and why is it necessary? Furthermore, how do you jump from a fucking ear infection TO DEATH!??

The research on meningitis isn't helpful either. It's a rare disease that doesn't infect all that many people, statistically speaking, and doesn't kill all that many people. Also, unlike with the measles outbreaks, it's unclear how many infants really do contract an ear infection that turns into meningitis and then death. I also couldn't find out exactly how meningitis is spread...like, what if I just have to take some steps to make sure my child isn't in the path of this deadly disease that definitely does kill newborns more than anyone else?

I couldn't find these answers online. The pediatrician didn't give them to me. If I hadn't spent yesterday up on the island with Adam, I would've called the Cleveland Clinic immunologist. Instead, I lay in bed last night, listening to Taylor Swift, and I googled, "Hib vaccine history". This led me to that amazing pinkbook. The page on the epidemiology of the Hib vaccine was fucking full of the information I needed! I mean, this page laid out the history and discovery of the disease as well as the history and discovery of the vaccine. It told me all about how the vaccine is made (language I don't understand) and when it started to be distributed. It tells me where Hib lives and how it's passed on and why it affects infants disproportionately to adults. AND it tells me the rates of infection before and after the vaccine. It basically answered every fucking question I ever had and made vaccination a total no brainer to me.

The Pinkbook has information on EVERY VACCINE. It's the best resource you can find to be truly educated and really have all of the information you need to make your decisions. Personally, I had no questions about polio, MMR, tetanus, and everything against which I was vaccinated. I thought the common knowledge information was clear and obvious. However, maybe that isn't the same for you. If it's not, then I suggest you look it up in the Pinkbook. It is industry standard for the medical profession. This is the vault of vaccination information. It will definitely answer any question you might have. I can't say enough about this resource and how much I wish it were made more available to everyone. Like, if I can find it at 2a, when I'm crying about what an asshole my pediatrician was and consoling myself with Taylor Swift and kitty snugglez, why the fuck didn't my doctor pull out his copy, open it to the vaccination in question, and let me read it right then and there?

But as I'm learning as I have to deal with more and more doctors, it's not always easy to get the information you want or need. Lots of people don't ask questions. Lots of people do what they're told. Lots of people lie to their doctors and ignore their doctors and do what they want. And lots of doctors don't have the time or the knowledge or the desire to really answer questions for which they think the answer is already obvious. It's a flawed fucking system, which is annoying as hell...but is not going to stop me from pursuing the kind of care I want and the answers I need.

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