Side Note – does anyone find it curious that SIDS (Sudden Infant Death Syndrome) seems to most occur around those same well-baby/vaccination administration timeframe.  Interesting data on SIDS and vaccine timing  has been reported and will hopefully continue to be monitored and shared with those who choose to vaccinate. 

Deteriorate could mean one, or several, of the parents’ following observations or concerns:

Jonny is no longer as ‘engaged’ as was.

Lacy is acting ‘a little slower’ than before.

My baby looks ‘sort of out of it’ now.

Timmy used to speak…Jamie used to crawl…Charlie used to look right at me…Macy was such a social butterfly…but now there is nothing…no words…unable to talk…has a blank stare…seems as if the curtains were pulled and they are now ‘in their own world’.

All of the above statements from this scenario conclude with Mom or Dad saying, “Something isn’t right, Doctor.  Could it…could it have been the vaccines?” 

#1 – It Can’t Be

If the doctor’s response is, “The Vaccines?  Pshaw!  You ___ (misinformed, silly, uneducated, dumb) parents.  Vaccines are ___ (safe, effective, well tested, for the greater good, required)!  Everyone should get them.” 

*Note – the doctor’s response might also include non-verbal body language like a raised eyebrow, a crossing of the arms, a shaking of the head.  The doctor may not resist adding a “Have you been reading bunk on the internet again?” sort of remark.  He may go so far as to warn parents that shouldn’t be listening to a Hollywood actress for their vaccine information.

When a parents’ concerns are ignored or doubted and a condescending answer is offered instead, what can Mom and Dad do?

Consider finding a new pediatrician. 

#2 – Actions Speak Louder Than Words

Same scenario—parents present the doctor a “first this, then that” observations (i.e., baby was fine, baby got vaccines, baby’s not doing so well after vaccines, and baby is getting worse).  Instead of addressing a possible vaccine connection, the doctor says nothing about the vaccines and tries to end the conversation:

“Boys are slower to develop than girls…”

“That high fever is normal…”

“Just give some Tylenol and let her sleep it off…”

“He’ll be fine…don’t worry so much.”

Saying something about vaccines is at least a response (even if it is the ‘Pshaw’ response above).  But to say nothing of them is troubling.  Not acknowledging that Mom or Dad made a logical conclusion of what they witnessed is a slap in the face.  Why?  Because Mom and Dad are with the baby 24/7. 

Moms are told all of the time that they know baby best.  One would think that Mom’s daily observations are as valuable (if not more so) than the doctor’s brief interactions with the child.  Completely dismissing the concerns and the observations that parents present about their child is not only unfair, it can delay treating very real symptoms known to accompany a vaccine reaction.  What can Mom and Dad do?

Consider the breakup process sooner rather than later:

#3 - It’s Not Me (Doctor).  It’s You (MOTHER)

Instead of slowing the vaccine schedule down despite several “if this (vaccine at 12-month appointment caused high-pitched screaming, high fever and an ER run), then that” (sunken eyes, severe gut problems, loss of beginning language)” events, some providers will continue to choose to blaze full speed ahead with the vaccine schedule.  They do this while trying to assure a now very worried Mom and Dad who, yes, are reading as much as they can on the internet and elsewhere, that vaccines are nothing to worry about. 

Parents may soon find themselves at an emotional breaking point.  They’ve begins while they second guess themselves. “I was only following what my doctor told me to do…” may be running through their minds.  Worry, doubt, and mistrust also begins to surface and doesn’t go away. 

That good ol’ ‘trust the doctor’, ‘he knows best’ and ‘don’t buck authority’ upbringing can cause major turmoil for parents.

They want to respect authority. 

They want to trust their baby with this highly educated person. 

They instinctively want to believe the doctor knows more than they do about vaccines. 

But when a parent isn’t being heard and when they aren’t feeling confident about their provider’s responses or actions, Mom and Dad may be forced to question not only themselves, but to also question the professional, his knowledge, and his worrisome delay tactics.   

The wait-and-see response that many parents are offered when they suspect their child has reacted negatively to a vaccine gives parents false hope for a window of time that might not exist.  What will happen if they wait any longer and agree to the doctor’s suggestion of adding more vaccines?  Well, that window is going to slam shut. 

What is the non-medically trained yet highly-observant parent to do?  Question authority?  Absolutely!  Why?  Because of a very important statement parents are told all of the time, “You know your child best!”

Sadly, parents are shut down repeatedly.  They are shut down and put down.  Not until I read my son’s medical record did I realize that my questions and my concerns were being shot down and that I was being put down.  I found that my words were being used against me and that anecdotal reports were transcribed with harsh, finger-pointing language,

“MOTHER states…”

“MOTHER insists…”

“MOTHER wants…”

“MOTHER refuses…”

I was crushed.  The person I trusted my son’s life with turned on me once we left the exam room.  What can a MOTHER or a FATHER do when faced with that discovery?

Politely request the medical records, and search for a different doctor. 

#4 – One Size Does NOT Fit All

Now, for the introduction for the next reason why someone may want to seek a different provider, I’m going to be a little bit nosy.  I have to ask though.  Did your pediatrician ask you for a family medical history prior to talking to you about vaccinating your child?  Full medical history means just that—a thorough, share everything, and I mean e-v-e-r-y-t-h-i-n-g, about your family’s past medical history and from BOTH sides of the family.  That full, bare-it-all medical history can play a role in how a child responds to certain standard measures that pediatricians might offer. 

Think back through your family line.  Recall every relative and also their health.  What you know about these people and their health? 

Did you and your doctor discuss your chronic fatigue syndrome? 

Your husband’s borderline ADD? 

Your oldest child’s life-threatening allergy?

How about you other child’s autoimmune disorder? 

Did you talk about your nephew’s seizure activity that started after getting booster shots? 

Did you tell them that Uncle John has diabetes?  

Or your brother-in-law’s heart condition? 

Did you know that it would be important to share that sort of information?  Family history beyond your immediate family can provide insight to making medical decision, including making decisions about vaccines. 

When as much as could be revealed was shared with the doctor, was enough time given to discuss the pros and cons of vaccinating knowing those conditions, disorders, and chronic ailments play a role in family members’ health?

Did they counsel you on which vaccines are contradictory? 

Did you go home and review those findings on your own? 

Did you research the vaccine, its ingredients and its history (i.e., has it ever been recalled)? 

Did you review vaccine reactions, vaccine injury, the vaccine injury table, and vaccine court?

Did you take notes about all that you learned and prepare questions for the pediatrician? 

It’s a lot to think about.  But, if you didn’t know that you had to think about all of that, how else could you get a complete picture of your child’s health history and how it might respond to something like a vaccine?  When you go back to speak to your provider, you might want to:

-discuss each and every vaccine and each and every ingredient of each and every vaccine

-go over each package insert (in layman’s terms, the package insert is the vaccine “label”) line-by-line 

-ask for data about long-term studies

-review and understand what the reported adverse reactions are for each and every vaccine

-note the effects of the vaccine on certain populations within their listed control groups

-understand that reported information includes what was not studied (i.e., like that the flu shot and the DTaP vaccine, which are offered to many pregnant women despite limited studies on pregnant woman and their unborn child)?   

-feel fully informed about the decision to vaccinate knowing that should a reaction or an adverse event occur, that you are completely on your own unable to legal action for that reaction or adverse event

A great amount of useful information, when shared respectfully, can allow parents to be fully informed but only if they know to look for it, to ask for it, and to be given time to comprehend it. 

So many parents report today that they wished they knew now what they should have known then.  These days it’s easy to look things up, but for many of us with older vaccine children, back in the day, we relied on the doctor’s good word (or no word if they kept mum) about vaccines and about adverse vaccine reactions. 

This scenario is quite lengthy, but before concluding Reason # 4, here are just a few other things to consider and some examples of what I would hope every parent to know prior to certain vaccinations:

Were you told the Hep B vaccine is intended to prevent a sexually transmitted disease and that the vaccines’ efficacy could fade by the time baby grows up and is sexually active?

Were you informed that a live-virus vaccine (like the MMR) can shed can infect others?

Did the doctor tell you that the varicella (chicken pox) shot, even though it was intended to prevent chicken pox, has actually done the opposite? 

Were you made aware that the vaccine schedule is recommended and not required as is commonly stated? 

Side Note – only some states require vaccines; NVIC  is one place to search for more information.

Did the doctor tell you that that old argument “but he needs his shots for school” is not completely true and that one of three types of vaccine exemptions are available in every state? 

Were you offered to space vaccines (which means not getting 9 shots in one day)?

Side Note – Merck took away a parent’s choice to get the single doses of the Measles, Mumps and Rubella vaccine.  Parents are now forced to get the multi-vial vaccine, the MMR vaccine, if they choose that for their cihld.  If complications arise, it would be difficult to know which of the three vaccines caused the issue.  That is the true for the DTaP also, another three-in-one vaccine.  These vaccines, the MMR and the DTaP, tend to be given with other vaccines, like the Hep B, Prevnar and Polio vaccines.  They are given at the same time despite no studies having been conducted on how each of those vaccines works when given together.   

Now, once those types of questions are answered, and after a parent has done their own thorough research based on their family’s history and conditions, their vaccine pro and con list should be well supported with detailed facts.  If more information is needed, like any important decision, I’d encourage parents to continue to discuss what needs to be discussed until all of their questions are answered. 

If, after all of the discussion and after the doctor clarified what needed to be clarified, does he or she respected your concerns and your input?  Is he or she willing to slow down or completely stop the vaccine schedule until you are more comfortable to vaccinate?  If yes, you found a great doctor who sounds like they are ready to work with you. 

But if you have the slightest hint of an unsettled feeling about vaccinations, what’s a parent to do? 

Before you get fired from the practice, start looking in the yellow pages for a doctor who you feel will be willing to talk with you, to walk with you, and to help alleviate some of the struggle that can accompany making a vaccine decision. 

#5 - Sign on the Dotted Line

We are given warranties on high-dollar products many times throughout our lives—on our homes, on the appliances that we buy, on the cars that we drive, and on professionals we employ for services rendered.  A growing practice that took me completely by surprise was when our pediatrician’s office asked me to sign a document  about vaccinating my child.  Well, in this case, about not vaccinating him. 

The form makes clear that the parent is not following the recommendation of getting vaccines.  The form states that the parent is declining the vaccine(s) which go against the doctor’s strong recommendations.  Fine.  But, wait.  At this point, the doctor should already know the child’s complete medical history, right?  And they should be fully aware that, for this child, vaccines are not fine.  In fact, some vaccines and their ingredients may add more risks than benefits. 

Common sense would show that that would be an incorrect form to offer a parent because that child’s pediatrician should already well understand that with the family’s history (of autoimmune diseases, mitochondrial dysfunction, chronic illnesses or the severe allergies and increasing attention problems for example) and that vaccines should not be considered.  Plus, for the majority, vaccines are recommended.  With that recommendation comes an option:  to say, “Yes, thank you”, or to say, “No, thank you.”  Options should not require refusal forms. 

So, why document a refusal when such a refusal isn’t warranted?  And why document a refusal of a something that, for the majority, is not requirement?

If you are asked to sign the form, maybe you could offer them something like this one  instead.  I don’t wish a standoff to occur, but I wonder if a, “I’ll sign yours if you sign mine” reply might help a parent who is questioning the number of vaccines being given and the timing of each.  If a doctor says that they’d be happy to sign it and that they will be held accountable responsible for any and every adverse reaction, then you have yourself an honest man.  If not, what’s a parent to do? 

Remember that breaking up, while it may initially sting, it is not hard to do. 

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If someone is causing pain or whose actions bring about suffering to a child, wouldn’t it be in the child’s best interest to remove that someone?  Parents don’t usually let other professionals railroad other important decisions they make.  They should be confident with whom they choose to care for their child.  If they are not confident, if they do doubt, if they do walk away feeling bullied, be it a nurse, doctor, therapist or educator—having an unsettled thought or constantly questioning someone’s motives might indicate that it’s time to shop around for someone else. 

From a very young age, many of us were taught to respect doctors and nurses.  They walk as if on hallowed ground.  Some doctors and nurses work with the most vulnerable and precious of human beings—babies!  That all should be vaccinated is the latest message that’s coming out of many health departments, medical organizations and the media.  I find that message disturbing.  I know that a lot of other parents feel that same way. 

A lot of parents I run into are asking to be educated by their providers.  But I hear more upsetting stories about vaccine education than comforting stories.  Once these parents remember that they are ultimately responsible for their child and for his health, I believe that more of them will find the courage to say, “Thanks, Doc. But you’re fired.”

Cathy Jameson is a Contributing Editor for Age of Autism.