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Lara’s Story Part 2: Vaccines and Autism

Today’s post is a continuation of Lara’s Story: Growing Up Anti-Vaccine.  Despite being raised in an anti-vaccine household, Lara Lohne looked to science to determine whether she should vaccinate her own children.  After much consideration, Lara weighed the risks and benefits and proceeded to vaccinate with her children with confidence that she was making the best choice for the health of her children.

As an unvaccinated child, Lara had suffered many vaccine preventable diseases first hand. Although she had survived, she recognized that there was always a risk that her children might not.  Besides, she certainly didn’t want to see her own children suffer in the same ways she had.  By vaccinating them, she hoped to minimize the risks of vaccine preventable diseases in her family.  However, she knew that there was one thing vaccines could not prevent…or even cause.

And that would be autism. 

I must admit that it was through conversations with a coworker that I began to suspect something might be wrong with my youngest son.  It concerned me so much that I started looking for information online. I read some of the stories and they sounded similar to what I was experiencing with my son – with the symptoms, the regression and the age at which it all started to become apparent. He was born in 2007 and by 2009 he had already begun Early Intervention. 

Oddly enough, due to financial constraints she was dealing with at the time, Lara had yet to vaccinate her son.

Perhaps that bit of fate was a good thing since I might have fallen back into the anti-vaccine sentiment if he had been vaccinated prior to his diagnosis.  I hadn’t heard about the vaccine/autism link until after we suspected something.  Then I recall thinking, “Wait a minute, he isn’t vaccinated so vaccines didn’t cause it in him.” It was just a few months later that Andrew Wakefield was discredited so I figured that was the end of that. I assumed common sense and science would set the record straight. But I forgot how all-encompassing the anti-vaccine feeling can be.

Lara was determined to do all she could to support her son and over the years she has become very involved in autism organizations to help promote awareness and education.  However, this has required her to navigate a rather difficult road – one that requires support and understanding from the autism community, while also accepting her conviction that vaccines do not cause autism. Read more…

Lara’s Story: Growing Up Anti-Vaccine

March 6, 2012 93 comments

Lara Lohne grew up in an anti-vaccine household.  Although her father was fully vaccinated, the decision for Lara and her siblings not to be vaccinated rested primarily with her mother.  Several of her extended family members happened to be chiropractors, including her grandfather and two uncles, and Lara believes that they were a big influence on her mother’s position.

Lara explains that as a young child she didn’t realize that most people were, in fact, vaccinated.

 “I lived an extremely sheltered life growing up, and I was essentially taught that what my parents (or my mom) believed was the only point of view that mattered.  Any other view was considered as rebellion and betrayal.  In my house, people who were vaccinated were contaminated and less pure than those who chose not to vaccinate. I remember when I asked my dad if he was vaccinated.  He told me he was because he served in the Marine Corps and it was required for service.  It was a huge disappointment to me and I had difficulty not feeling resentful toward my dad because of it. Of course I was only eight years old at the time and only had what my parents told me as the basis to form my beliefs and opinions.”

Lara remained unvaccinated throughout her childhood and recalls a time when there was a measles outbreak in school.  She was in the ninth grade at the time and she didn’t want to be removed from class.  She asked her mom if she might be vaccinated so she wouldn’t have to miss school.

“She had told me we’re not going to let them inject us with poison. It is only a trap, trying to force us into their way of thinking. She used to say, over and over again, “We are not sheep!” She told me that the shot would cause me to get sick, make me go crazy or retarded (her word) or even kill me. She successfully talked me out of it at the age of 14.”

Despite her mother’s insistence, two years later, Lara was surprised that her parents took her to receive her first MMR shot at the age of 16.  Read more…

There’s Value in Vaccines, Even When Not 100% Effective

March 2, 2012 6 comments

Does the fact that vaccines are not 100% effective mean that they have no value in preventing disease?

Certainly not.

When we are vaccinated, we expect that the shot we receive will prevent us from acquiring certain diseases. After all, vaccinations are injections intended to stimulate the immune system so that it is able to recognize invading bacteria and viruses and produce antibodies to destroy or disable them, thereby preventing disease.  While this is certainly the intent of the vaccination, it is not always the result.

The unfortunate reality is that not every person will generate a protective immune response to a particular vaccine on a given day.  Chalk it up as a scientific limitation of modern-day medicine, but the truth is that vaccines are not 100% effective.

A person could produce an immune response to one vaccine, but not another. Or they could respond well to a vaccine on one day and not another. In fact, some people may never generate a protective response to a specific vaccine no matter how many times they receive it. And since we don’t always know why this happens, we can’t predict exactly when it will happen either. That is why we must accept that just because we are vaccinated doesn’t ensure that we are completely protected.

Fortunately, science does provide a way for us to test whether a person has generated an appropriate response to a vaccine by way of a blood test that is refered to as an antibody titer.  The National Institute of Health defines the antibody titer and explains that it is used to determine:

  • The strength of an immune response to the body’s own tissue in diseases such as systemic lupus erythematosus (SLE) and other autoimmune disorders
  • Your need for a booster immunization
  • Whether a recent vaccine caused a strong enough response from your immune system to protect you against the specific disease
  • Whether you have, or recently had, an infection such as mononucleosis or viral hepatitis

The fact that vaccines are not 100% effective actually helps explain why the vaccinated population should remain concerned about the number of non-vaccinated people there are within a community. The number of people immune to a specific disease versus those who are not immune can directly impact the likelihood of disease transmission.  

Certainly it is anticipated that most people will generate the expected immune response.  And even though some people may not have immunity because they are either (1) purposely unvaccinated, (2) too young or medically unable to be vaccinated, or (3) vaccinated but unable to elicit the proper immune response, The National Institute of Health explains they may still be protected through a concept called “community immunity”. Read more…

Why Hepatitis B Vaccine is Not a Lifestyle Vaccine

February 27, 2012 59 comments

This weekend, a colleague brought something to my attention that I’ve been thinking about all weekend.  It was a tweet that read as follows:

VaxCalc:  HPV (Gardisil) and Hep-B are lifestyle #vaccines; should govt mandate lifestyle choices?  #freedom #vaxfax

As I was thinking about this statement and conjuring up a response, I came across Dr. Natasha Burgert’s recent blog post on KC Kids Doc.   How timely!  She has created an engaging video presentation that addresses the six most common questions she hears from parents regarding the hepatitis B vaccine such as:

  1. Why does my newborn baby need a hepatitis B vaccine?
  2. What is hepatitis B?
  3. If my prenatal labs show that I am not infected with hepatitis B, why does my baby still need to get vaccinated?
  4. Isn’t hepatitis B an infection spread through sex and drug use?
  5. How could my baby get infected with hepatitis B?
  6. What if I wait until my child is older to get vaccinated?

Not only does her presentation answer many questions, but it also helps to explain that hepatitis B infections are not limited to lifestyle choices.  Many people don’t realize that they are infected, which consequently results in many cases being spread by casual contact.

The fact is that approximately 24,000 women with hepatitis B infections give birth in the U.S each year and many do not even know they are infected.  Sadly, infants infected at birth have a greater than 90% chance of suffering a chronic infections such as liver cancer, cirrhosis and liver failure when they become adults.

When it comes to the hepatitis B vaccine, it appears that one of the biggest parental concerns is the timing of the vaccine.  Since this is the first recommended immunization, parents are sometimes surprised that it’s suggested before their child even leaves the hospital. By catching them off guard, some parents feel a bit unprepared to make such an important decision. This can even result in a parent feeling hesitant about the recommendation and questioning the need for the vaccine at such a young age. Perhaps that is why one of the most popular posts on Shot of Prevention has been a piece entitled Why Infants Should Receive the Hep B Vaccine At Birth.

However, there is one thing that is extremely important to note about the hepatitis B vaccine; it’s not just preventative, but it’s also therapeutic.  See, even when tested prior to delivery, some mothers are not properly identified as being infected with hepatitis B.  But fortunately, if a child who is infected at birth receives the vaccination shortly after, their infection status can actually be altered so that they are no longer at risk of chronic infection.  I find this to be a fascinating benefit of this particular vaccine which only helps to justify the importance of the birth dose.

Most importantly, we must realize that parents and their doctors need to be having discussions regarding the recommended childhood immunization schedule long before a mother goes into labor.  Without a proper conversation regarding the risks of disease and the benefits of vaccines, it’s simply unrealistic to expect parents to make informed decisions, especially at a time when parents are often overwhelmed, exhausted, and struggling to adjust to the birth of their new baby.

There are lots of resources that parents can use to help educate themselves on the importance of the hepatitis B vaccine such as the following:

Immunization Action Coalition Information on Hepatitis B and Why the Birth Dose Saves Lives

Hep B Moms

The Children’s Hospital of Philadelphia (CHOP)

Perhaps with a bit of research, parents will have a better understanding of the fact that while lifestyle choices may increase a person’s risk of contracting hepatitis B as an adult, there are still ways in which infants and children can contract it without even knowing. A simple and safe vaccine, that is recommended for all children at birth, can help prevent people from suffering with chronic disease as adults.  Knowing this, it’s easy to see why the vaccine in recommended for all.

How the Doctor/Parent Relationship Can Impact Immunization Decisions

February 24, 2012 2 comments

Last year at this time my ten-year old daughter was in and out of the doctor’s office, ER and then finally admitted to the hospital as we struggled to diagnose and treat what proved to be a dangerous health issue.

During the parade of doctors, interns, nurses and technicians that we encountered along the way, many would inquire what she wanted to be when she grew up.  I presumed they were simply making small talk or hoping to hear that she wanted to pursue a career in the field of medicine.  While that is certainly not the case for my budding fashionista, who dreams of designing her own line of clothes, I discovered that I was the one with a bit of career envy. 

The fact is, when your child is in pain and you have more questions than answers, it can be quite nerve-racking.  While I certainly felt that the medical staff had her best interest at heart, I couldn’t help but wish I had the medical training to take care of these issues myself.  I couldn’t help but wish I had become a doctor so that I wouldn’t have to rely on others for all the answers.

What was even more frustrating was that during the course of this ordeal, the various doctors and specialists often had a difference of opinion about her diagnosis.  I quickly realized that while science can often provide us with hard evidence, there are times when it is an intricate puzzle.  Fortunately for us, after a total of about three weeks and numerous tests, the puzzle came together and we had a clear understanding of the problem at hand.

However, when it came time to decide on treatment, the doctors again presented a choice of recommendations.  Ultimately, my husband and I were responsible for making the final decision, but we would have been foolish not to rely on the training, advice and experience of our daughter’s doctors.

Through this experience I realized some important things about the doctor/parent relationship. Read more…

A Family Struggles to Understand Seizures Following Vaccination

February 8, 2012 37 comments

It’s understandable that parents can be concerned about adverse reactions to vaccines.  Although they are rare, we know they exist.  However, from a medical standpoint, it’s also important that parents realize that just because a medical condition surfaces in the hours, days or weeks following a vaccination, doesn’t necessarily suggest that the event has been a result of the vaccination.

Just last week, a business colleague of mine, who has herself been involved in a vaccine trial, shared a relevant story.  Apparently, another participant in the trial had fallen and injured her head during the course of the study.  Even though the fall was a result of dancing on a table in a bar, the injury required a complete investigation to rule out the vaccine as a possible cause.  While most people would laugh at such a ridiculous suggestion, it exemplifies the strict guidelines of medical observation and investigation required during a study of vaccine safety.

It’s likely that when the average person reads about a seizure shortly after vaccination, they may understandably make the assumption that the seizure was caused by the vaccine.  While dancing on a table may be an extremely odd association to attribute to a vaccine,  there are common medical issues that are often mistakenly blamed on vaccination.  Seizures are often one of them.

Take for instance Laura Cossolotto, the mother highlighted in this Washington Post article.  Her daughter Michaela developed seizures three days after receiving her DTP shot.  For years she made the direct association that her daughter’s worsening condition was a direct result of this particular vaccination and in reading the article one can certainly see why.  As the article explains,

Cossolotto, who spent hours online desperately seeking answers, found the vaccine hypothesis persuasive, particularly after doctors failed to offer another explanation.

The article then elaborated on Michaela’s worsening symptoms by stating,

Despite test after test, no doctor could say what kind of epilepsy she had, and no cocktail of medications proved effective in controlling the seizures. Nor did doctors know the reasons for problems that emerged as she aged: delayed speech, mild mental retardation and serious growth deficiency.

As I read this article, my heart went out to this family.  They suffered through more than ten years of testing, medication and attempts at treatment.  Fortunately, a proper diagnosis was finally revealed that would help explain why Michaela’s condition had nothing to do with her vaccination.

The blood test for the SCN1A gene revealed that Michaela had Dravet syndrome, also known as severe myoclonic epilepsy of infancy, a rare and serious form of the seizure disorder….Dravet is usually caused by a spontaneous — not inherited — genetic mutation present at birth that affects the functioning of brain cells…Its hallmark is severe seizures during the first year of life that are difficult to control. Many children with Dravet, which occurs in one in every 20,000 to 40,000 births, also exhibit poor language skills, behavioral problems and cognitive deficits. There is no cure for Dravet, but some medications are effective in controlling seizures….In many cases Dravet emerges when a baby runs a fever, which can occur after receiving an immunization. But, notes Wirrell, chief of pediatric epilepsy at Mayo, “it’s absolutely not the immunization causing Dravet” but rather the fever that causes the existing disorder to surface”. Wirrell, who has seen 20 children with Dravet, said that those who have never been immunized show symptoms after spiking a fever.

I offer this case for discussion because it highlights the complexities of defining various post-vaccination conditions as adverse reactions.  This story illustrates how easy it is for parents, and even doctors, to mistakenly believe a causal relationship between two events.  However, as science has revealed more about Dravet syndrome, it’s clear to see that it has also provided a more comprehensive understanding of how what may first appear as a adverse reaction to a vaccine is simply part of a child’s genetic makeup.  For instance, The Washington Post article refers to a 2010 study in Lancet Neurology which found that the vaccine did not affect the outcome of Dravet and illustrated that babies whose seizures began after the shot fared no worse than those whose illness surfaced at another time. Additionally, a 2011 report in the journal Pediatrics found that five children presumed to have neurological damage caused by the shot were later discovered to have Dravet.

Certainly, the Cossolotto family had reason to suspect that their child’s condition was brought on by the vaccine. However, we are fortunate to now have the scientific evidence that identifies Michaela Cossolotto’s condition as one of genetic origin.

The belated discovery of what was wrong with her daughter would upend Cossolotto’s long-held views and lead to major improvements in Michaela’s life…As a result of the diagnosis and proper medication, Michaela’s life has dramatically improved. Although she still grapples with cognitive and behavioral problems, her seizures have dwindled to only a handful annually…Without a diagnosis, Cossolotto said, she would probably still believe — erroneously — that the DPT shot caused Michaela’s illness.

It’s true that people who respect the science behind immunizations are sometimes suspect of parents who claim their child is vaccine injured.  However, this doesn’t mean they are questioning a parents’ integrity.  Certainly parents who make claims about adverse reactions believe them to be true.  However, if a reaction is suspected, immunization advocates will suggest that the incident  be fully examined and supported by scientific and medical evidence.   This may be the only way to know whether the reaction was brought on by a patient who had been dancing on a tabletop or who had an undiscovered genetic disorder.

Vaccine safety is certainly not a forum for speculation.  When it comes to investigating vaccine adverse events, we must continue to test new theories, while also accepting the evidence from those already tested.  After all, as Laura Cossolotto states, “Having an answer does make a difference.”

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