July 5, 2019
In light of the recent increased political participation required of those of us who wish to retain the right to informed consent over what happens to our bodies and that of our children, we’re expressing our patriotism with a post by one of our favorite medical choice advocates with over two decades of legislative advocacy experience in Illinois.
Some of you have indicated that you struggle with how to clearly define what you want in regards to vaccination policies in a way that lawmakers can hear you. This post is to help you better define what you want within what is a reasonable and realistic ask.
Here are mine:
I’d like to see a separate vaccine safety office outside the CDC, ACIP, and FDA approval and promotion offices.
I’d like to see better monitoring of potential adverse health effects for longer periods of time, i.e., 30-120 days post vaccination.
I’d like to see more manufacturers make more vaccines separated as opposed to combined.
I’d like better screening and identification of those who may be more susceptible than the general population to experience an adverse reaction. I’d like genetics, family history, and current health status to be assessed and considered prior to administering a vaccine.
I’d like independent toxicology studies to evaluate the health impacts of injection of aluminum and other adjuvants.
I’d like for incentive payments and bonuses to physicians for maintaining certain vaccination rates to be ended.
I’d like for HHS to comply with the testing and monitoring required under the National Childhood Vaccine Injury Act of 1986, including random sampling of lots. Testing should be done by third parties with no links to manufacturers, CDC, or ACIP.
I’d like the liability protection for those who manufacture or administer vaccines to be repealed.
I’d like to see a database created that tracks adverse or suspected adverse reactions that health care providers can access readily. Adverse events are under-reported to VAERS; health care providers need additional training on required VAERS compliance.
I’d like testing of vaccines with true double-blind placebos.
I’d like to see the schedule reduced significantly to optimize the time for development of antibodies.
I’d like the hep B vaccine birth dose to be only administered in cases where mom is hep B-positive.
I’d like a hierarchy of true risk vs. benefit of contracting the disease vs. administration of the vaccination.
I’d like for parents and individuals to maintain autonomy over what is injected into their bodies and their children’s.
I’d like for health care providers to respect and work in collaboration with parents who would like to adopt alternative schedules.
I’d like unbiased scientific consideration for the potential long-term benefits of the contraction of a non-lethal disease in childhood vs. routine population-wide vaccination, e.g., varicella—lifelong antibodies, increase in shingles, waning immunity, loss of maternal antibodies, etc.
So, that’s a start for me. How about you?
~ Illinois Advocate
The 1986 NCVIA needs to be abolished – fully repealed. Anything short of full repeal will leave a totally corrupt framework in place. Also, 30-120 days is not long enough follow-up post vaccination. In fact this is similar to what was done for Gardasil. Follow-up has to be years, similar to what is done in cancer trials and cardiovascular trials. It’s not too much to ask; it’s simply what is necessary to understand the impact of vaccines on downstream health (all potential health outcomes). Frankly, it’s nuts that we inject infants with products for which there are no comprehensive studies. It’s an abominable error in judgment.
I agree that we need much longer term followup. Autoimmune diseases often take two years or more to develop.
The one Gardasil trial that had something that might have been a genuine placebo really didn’t discuss safety at all. It would have been the ideal trial for long-term followup. But guess what? When the study was over they vaccinated the control group! No possibility of long-term followup. Sweet, huh? The ONE study that could show whether or not there is a statistical difference between autoimmune diseases in kids vaccinated with Gardasil vs. kids who weren’t.
17. All states have all exemptions for school attendance.
Or no vaccine “requirements” at all.
Yes I agree. But I see exemptions as a preliminary step.
I wanted to drop an additional note about something a school nurse shared with me as I was giving the medical background part towards getting my son’s first IEP drafted. The nurse shared that the majority (somewhere of around 90%) of the kiddos getting IEPs through their offices and who were struggling in school had mothers that were hooked up to a pitocin drip prior to delivering their babies, like for more than a few hours 6+. The school actually had a private nickname for the children and their related mal-behaviors, the ‘p-drip’ kids. This has stuck with me over the years and I especially let expecting mothers I meet know what I heard should there actually be a link. Which there could be if you think about it, that nurse has probably interviewed near a 1000 moms/dads within a likely 5 year stint. I wish someone could run some serious stats retrieved from school nurses in our country. Mail off a Q & A narrowing in on how their deliveries went, if they had pitocin IV (inducing medicine) and of course for any histories of vaccine reactions, hives and the need for prednisone treatments etc. There is a wealth of information available, just sitting in school records from all these families and their personal struggles navigating life with children of special needs. Could be very useful? Is it a precursor to the myelin sheath damage, making the nerve more susceptible to additional damage accelerated by the vaccine agents, like a domino effect?? Thank You, Im just a single mom wishing I could help solve the puzzle, do more but just always trying to get by. I have a brain but spend most of its good energy on raising my son and attempting to guide him into life the best I can.
This is disheartening to me. I have a daughter on the spectrum and I’ve been over all the usual suspects of why. I don’t have mercury fillings, I had no vaccines during pregnancy, she has had none, I only had 2 ultrasounds, labor was completely drug free, she did get vitamin K only because I was already fighting tooth and nail for a VBAC and didn’t have any to spare for that fight, and she doesn’t have MTHFR. So I’m sure there are interventions that contribute, we can only see them on a population level. The individuals will still be their own unique puzzle.
Yes, unfortunately, individuals can get there in myriad ways. That’s why I’m particularly leery of the “evidence-based medicine” approach to treatment. There are treatments that work marvelously well for a good segment of the population that don’t work at all for other segments. Denying treatment for the first segment based on the idea that “it doesn’t work” for a majority of the population is just wrong-headed.
Just out of curiosity, what was your daughter’s antibiotic exposure? I think antibiotics aren’t discussed nearly enough. Their ability to disrupt the microbiome, a huge part of the equation for most children who have neuroimmune dysfunctions, is epic.
She had antibiotics for the first time right near her second birthday for positive strep throat swab. By then, she was very much exhibiting autism symptoms. Then atbage 6 she tested positive for anaplasmosis and had a 30 day round. I think tick borne diseases also play a role but I don’t know when she got it. She had no symptoms. I only tested her because I had recently been diagnosed with Lyme.
Was your Lyme chronic? I’ve heard of a lot of chronic Lyme as well as strep issues like PANDAS in the autism community. It could be a risk factor.
I don’t know for sure. The only symptomatic tick bite I had was before kids, but the symptoms that made me suspect Lyme didn’t surface until 15 years later. Who knows.
Yeah, I’ve heard of lots of people who don’t remember tick bites at all. I suspect that it can be transmitted a number of ways, and unfortunately it seems that it can be passed from mother to child. I know of at least one family where that appears to be the case.
Yes who do we vote for and where, where do we sign or who do we submit our reasonable concerns to??
Yes to all and more, we shouldn’t be shamed and doctors shouldn’t be allowed to be so pushy/or perhaps even practice medicine without adopting more ethics about vaccines unless they are 100% prepared to help everyone/anyone get specific answers about their experience.
The government should know by now that quietly posting a formal looking report with letterhead isn’t going to be enough in this day and age-transparency is the new requirement-get with the times here folks.
We want large scale coordinated health professionals out there actively working/looking and proving to scared families that they will be safe, offer allergy testing, individual case management, have routine community Q&As, open public museums full of informative exhibits and slide shows etc.
Finally with the Measles showing up again, anyone with documented/unquestionable records of an adverse reaction to an MMR combo shot should be granted access to individually prepared vaccines pronto, there should be special clinics, not just city wide ordinances.
Absolutely. Medicine needs to be MORE individualized, certainly not less so.
Here is the vaccine policy I would like to see:
No government vaccine policy at all. A complete separation of vaccines and state.
Number 12. Number 12. Number 12. It would change everything. If parents had the first two months of life to observe and get to know their babies with no vaccines on board, they could identify if there were changes after the first round of two-month vaccines, and if there were progressive changes beyond.
I refused HepB in the hospital, and got bullied by the on-call pediatrician because of it. My son had one seizure (at the time I called it a tremor) after his two-month vaccinations, including at that time the HepB. I didn’t make the connection at first because I was sleep-deprived and foggy. But when he had two episodes after his four-month round of vaccines, I made the connection, to the seizures and also to the fact that he had stopped napping for long periods.
In my son’s first two months, we enjoyed 2-3 hour naps twice a day. After vaccination, my son would only catnap for 20-30 minutes at a time, and he had become a malcontent baby. The only way I could get a shower or cook dinner was to put him in his swing, whereas before vaccination, I’d had those two long nap periods in each day to nap myself, to shower, to clean, etc.
We stopped vaccinating after his four-month visit, which meant we could no longer see the pediatrician we adored who’d seen each of our daughters through their childhoods.
Our girls were sixteen (the daughter I gave birth to) and fourteen (my stepdaughter) when the son we finally had together was born after six years of infertility, including one miscarriage. I had developed the concern over vaccination because of all the research I’d done on holistic ways of overcoming my endometriosis and PCOS (and lifelong asthma) and my husband’s ulcerative colitis.
I also had the experience of having raised two girls, one with chronic ear infections that meant she was on amoxicillin from toddlerhood straight through around kindergarten. And also on a FAR reduced vaccine schedule.
I remember being absolutely shocked when at my son’s two-month visit when the seasoned nurse put three syringes between her fingers for the first poke in my son’s chubby little thigh, and two more between her fingers for a second poke in his other thigh. And a repeat of that procedure occurred at his four-month visit. Our girls had a handful of vaccines over the entire course of their childhoods, not two hands full all in one day.
It would take about a year of heavy supplement therapy, chiropractic visits, and much discovery around what foods our son was reactive to before he began napping for long periods again. Chronic croup and early elementary school was a huge struggle for us. He is now sixteen and still struggles with anxiety, particularly social anxiety and focus in school.
I believe being older parents and our battle with infertility should have automatically put our son in a high risk category for vaccines. I shouldn’t have had to argue with the pediatrician on-call while lying in a hospital bed, recovering from a cesarean. We shouldn’t have been kicked out of the pediatric practice we loved because we wanted to suspend vaccination or follow a different schedule (which in my understanding is illegal). I should have had validation and support in following my instincts as my son’s mother–which incidentally I know I wouldn’t have felt so confident about if he had been my first baby alone at twenty, as I was with my daughter. We should have had support in discovering what kind of care would be best for our son’s lifelong wellness. Isn’t that supposed to be the point?
Informed consent should be a minimum standard of care for every individual at every stage of life, not something we have to fight for in every area in our and our children’s lifelong healthcare.
Yes! That would be a great start.
These are excellent ideas. If the powers that be truly want to improve vaccination coverage, they would move toward implementation of many if not all of these suggestions. It makes zero sense that so many vaccine-hesitant parents want single component vaccines spread out and The AAP’s answer are more combined vaccines closer together.
I have had many patients tell me they would take single-component vaccines but since there are none, they decline the combos. One should be able to access JUST a pertussis or JUST a measles, and have the others when they are ready. After all, it’s their bodies or their children’s bodies. No one but me is caring for my vaccine-injured 20 year-old. The government certainly never came through with compensation for her injuries.
When I was interviewed by Diana Williams on CBS, I mentioned that one of the issues in New York was that it was set up to be “all or nothing.” Either you accept WHATEVER vaccine the New York State legislature decides to put on the “required” list, without regard to your own child’s immune system, or you make the decision to eschew them completely. That is not a reasonable choice to have to make. I said something similar recently in my state senator’s office, remarking that lots of parents would be willing to do the MMR or the DTaP or the polio vaccine (and it really varies which ones parents would consider), but they can’t because the religious exemption is for ALL vaccines and they risk losing their exemption if they make exceptions. When it comes down to it, the state is practicing medicine and doing it very badly indeed.
As an Autistic adult I find this site very narrow minded and a bit self righteous. While I do like this very specific list of suggestions, not so much because I agree with the underlying vaccines-are-the-Autism-problem assumption, but because it might do some good for more than just this group’s demographic.
Here’s the catch, this group’s mindset is isolated and uncompromising and that makes the group’s potential for effectiveness very limited. This group, if it wants to become effective, must join with others in order to be heard and become an agent for change.
Consider that the African American US population is many times larger than the Autism community, of which you are a splinter, and that group has been ineffective in addressing Sickle cell anemia for many decades. Since Sickle cell anemia was discovered in 1910 the mortality rate has hardly changed.
The reality is that the pharmaceutical industry’s control over governments is so great that minorities, who can’t make profits for those companies, just don’t matter. The wish list posted here is good. The potential for making it happen are close to zero unless minority demographics somehow connect with one another to change the underlying health care industry’s model of operation. That will require compromise, something this group resists, to say the least.
ASAN is working on connections with many groups unrelated to Autism in order to be heard. ASAN is peopled by young practical spectrum individuals. This group could take a lesson from ASAN.
I’m sorry, Bob, but you have no clue what we’ve been doing to reach out to others. First off, our mindset is hardly “isolated and uncompromising.” Secondly our “demographic” is MOTHERS (and, frankly, we are perfectly welcoming of FATHERS) and their children, which means, despite recent declines in fertility, that it’s hardly a minority.
It’s REALLY hard to listen to you call us “narrow minded” and “a bit self righteous” without pointing out the fact that your supposedly reasonable organization’s membership sees autism in a very narrow sense indeed and frequently makes the claim that parents attempting to restore their children’s health (which has often been devastated by vaccines, among a number of other environmental exposures) are committing hate crimes. As far as they’re concerned, no parent should ever have chelated the mercury out of a child’s brain (despite the fact that many of those children are now able to complete graduate school), or given them supplements to relieve anxiety (but Abilify or Adderall are okay), or talked to anyone about the PTSD they live with because their previously healthy child’s brain is on fire. And the REALLY ironic thing is that this comment is on a post by Laura Cellini, who successfully led a compromise bill to completion in Illinois the LAST time this measles stupidity came up.
I find this comment interesting because I feel so differently.
When I first started seeing articles from Thinking Moms’ Revolution, all I could tell from both the group name and the articles was that this was a group of mom’s who explored medical and health issues as critical thinkers. I have not investigated or studied this group, but the thread that links all of the articles I have read revolves around asking important questions and exploring those questions. I am not autistic and I don’t have a child with autism, but I have aligned with so many ideas that have arisen from this group because it has invited me to consider different perspectives.
Perhaps we can all afford to open our minds.