"Would You Rather"
"Would you rather have your thumb amputated or your big toe?"
"Neither! I like all my toes and fingers to stay where they are, thank you!"
"Hey, that's not how the game is played, " my youngest daughter complained as we made our way around the block. We sometimes played the game "Would You Rather" when we took strolls around the neighborhood as it made the time pass quicker and there was not as much complaining about exercising.
"I know, but I don't like thinking about parts of my body being sliced off," the older sibling reasoned.
"Let's stick to other subjects. Like would you rather be stranded on a desert island or in an Antartica bunker?"
"Ok. ok! I guess an island because there would be more to eat maybe, like coconuts!"
As I listened to my kids' spar back and forth, my mind drifted back to a recent episode at work. My patient felt like she was in the "Would you rather" game field, but this was her real life. A pediatrician and I entered her room and noticed a discernible disconnect between the new parents.
The room was "chilly," there was no doubt about that. There was not an errant breeze wafting through the ducts or through the window of the smallish hospital room. No, the chill was surprisingly not weather related. "I want our baby to get vaccines!" the new mom tearily proclaimed to the doctor. "Do you want him to get autism?" the dad loudly whispered the "A" word in his wife's ear and the temperature in the room dropped...a few degrees more. Wifey immediately burst into tears and blubbered, "So hepatitis or autism? Are those my choices?" The pediatrician gave a much-needed explanation on the history of vaccines, how they were safer than ever and how he worked with parents who wanted alternative vaccine schedules. The dad was starting to soften, but still said he refused to change his mind. I cleared my throat and spoke, "I have family members with autism." Every face turned toward mine. The dad, the mom, the doctor, heck even the baby seemed to make an awkward grimace as their heads all turned in unison. You could literally hear a pin or perhaps a crumb(whatever has less molecular density) drop after I not only said the "A" word but admitted it was in my family. The dad's eyebrow went up, and the baby coughed, I swear he really did! "My husband and I have gone the rounds, though, so I know how you feel. He is a PA and was in school when our kids were being vaccinated. He showed me all the data, all the scientific reasons how vaccines are safe and how we needed to keep them on schedule. I agreed with him and thought seriously about his point of view. We researched the autism and vaccine connection and found there were just so many other major players than vaccines in the autism puzzle. We did find out we have some genetic differences that make our family process medications differently, so we have compromised and stayed with a more conservative vaccination schedule." I then gave the family information from reputable sites like the CDC and even researchers who are looking at improving vaccines.
So, that day, I did my duty as a nurse. Supplying folks with valuable information and letting them make their own choices. However, my responsibility as a mom is different than my mission as a nurse. When we moved from Idaho to Nevada, they told us our kids had to receive a certain amount of vaccines to be allowed to enter into school. After one kid received 8 vaccine rounds in one day, some in combination, less than a year later she developed schizophrenia. One neurologist told us if her disease course did not change, she was headed towards a vegetative state. Did the vaccines cause her condition or would it have happened anyway? The CDC website has informed me that this very line of questioning is why it has been so hard to determine exact vaccine injury in many cases. The good ol' what came first the chicken or the egg, question. I was so distraught by the neurologist's predictions that I immediately went to the psychiatrist and said, "There are some isolated studies out of South America that show some chain-smokers at high risk for schizophrenia never develop the disease or some with schizophrenia experience relief from consuming nicotine. I am going out to buy my daughter her first pack of cigarettes, or you can prescribe clozapine". The doctor laughed and said, "Ok, Ok, let's try the clozapine." So he prescribed the "grand-daddy" medication of them all. The drug with a black box warning that makes it harder to get than narcotics and yet changed our daughter's life, and she began her recovery. I remember feeling then that I was also playing the "would you rather" game. Would I rather have my daughter develop lung cancer or potential agranulocytosis? Side-effects of cigarettes versus side-effects of clozapine? Although she has had a few side effects from clozapine, mostly from its antiadrenergic properties, it has been a life-changer for her.
So the objective part of my left brain accepts that according to science, vaccines are some of the safest medications out there. But my right-brain momma side sees that the whole vaccination protocol is bound to the scientific method. And the scientific method is designed to gravitate toward the "mean" automatically excluding the outliers in its approach. So what is an outlier? Remember the time you were told you didn't need an umbrella or jacket because, statistically speaking, it was not supposed to rain? Then you wore your blue shorts, purple tank top and ended up in a deluge that soaked you down to your underwear. That event involved a time when an outlier became a major player. The scientific community is aware of the dreaded outliers and are often at odds on how to include the "little guys." Thiese, Arnold,& Walker 2015 state:
Traditionally, outliers were excluded from analyses because they were thought to be unduly influencing the statistical model, particularly in studies with small sample size. While this may be true in some instances, researchers may consciously or unconsciously exclude valid data that don’t fit a pre-defined data pattern or hypothesis, therefore committing an error. This may be a simple error that will have minimal impact on results, or it can be a fatal error, which will completely invalidate results. Arguments for identification and omission of outliers are common; however, there is little consensus on the appropriate treatment of an outlier. The most comprehensive approach is to analyze data with the final observations included and run the second set of analyses excluding these data.
So, what is to be done about the outliers, the misfits, the events that do not round-up towards the mean in a scientific study? According to the article, it's better to include them anyway and see if the results are similar. Simple, right? Except in some studies the researchers do not use this methodology. Maybe its time for research studies to be scrutinized and standardized themselves. This would appease my left and right brain immensely and limit the "Would you rather" feeling.
There is also promise in the field of pharmacogenetics. Pezeshki, Ovsyannikova, Mckinney, Poland, &Kennedy state:
"Recent advances in high-throughput technologies have enabled scientists to apply systems biology approaches to collect and integrate increasingly large datasets that capture complete biological changes induced by vaccines, and then decipher the complex immune response to those vaccines".
It looks like there is hope in the future for all of us "outliers" with genetic differences that detoxify everything from medications to environmental toxins differently.
So, did the dad at the beginning of this anecdote decide to vaccinate his sweet baby? I never did find out and I did so on purpose. The general public should be allowed the freedom to choose to vaccinate or not vaccinate. After all, we are all playing the "would you rather" game to the best of our abilities. Until statistical tools become more standardized in the research community, I continue to pray for the outliers AND I always carry an umbrella in my car.
References:
Thiese, M. S., Arnold, Z. C., & Walker, S. D. (2015). The misuse and abuse of statistics in biomedical research. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4401313/
Pezeshki, A., Ovsyannikova, I. G., McKinney, B. A., Poland, G. A., & Kennedy, R. B. (2019, March). The role of systems biology approaches in determining molecular signatures for the development of more effective vaccines. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/30700167
"Neither! I like all my toes and fingers to stay where they are, thank you!"
"Hey, that's not how the game is played, " my youngest daughter complained as we made our way around the block. We sometimes played the game "Would You Rather" when we took strolls around the neighborhood as it made the time pass quicker and there was not as much complaining about exercising.
"I know, but I don't like thinking about parts of my body being sliced off," the older sibling reasoned.
"Let's stick to other subjects. Like would you rather be stranded on a desert island or in an Antartica bunker?"
"Ok. ok! I guess an island because there would be more to eat maybe, like coconuts!"
As I listened to my kids' spar back and forth, my mind drifted back to a recent episode at work. My patient felt like she was in the "Would you rather" game field, but this was her real life. A pediatrician and I entered her room and noticed a discernible disconnect between the new parents.
The room was "chilly," there was no doubt about that. There was not an errant breeze wafting through the ducts or through the window of the smallish hospital room. No, the chill was surprisingly not weather related. "I want our baby to get vaccines!" the new mom tearily proclaimed to the doctor. "Do you want him to get autism?" the dad loudly whispered the "A" word in his wife's ear and the temperature in the room dropped...a few degrees more. Wifey immediately burst into tears and blubbered, "So hepatitis or autism? Are those my choices?" The pediatrician gave a much-needed explanation on the history of vaccines, how they were safer than ever and how he worked with parents who wanted alternative vaccine schedules. The dad was starting to soften, but still said he refused to change his mind. I cleared my throat and spoke, "I have family members with autism." Every face turned toward mine. The dad, the mom, the doctor, heck even the baby seemed to make an awkward grimace as their heads all turned in unison. You could literally hear a pin or perhaps a crumb(whatever has less molecular density) drop after I not only said the "A" word but admitted it was in my family. The dad's eyebrow went up, and the baby coughed, I swear he really did! "My husband and I have gone the rounds, though, so I know how you feel. He is a PA and was in school when our kids were being vaccinated. He showed me all the data, all the scientific reasons how vaccines are safe and how we needed to keep them on schedule. I agreed with him and thought seriously about his point of view. We researched the autism and vaccine connection and found there were just so many other major players than vaccines in the autism puzzle. We did find out we have some genetic differences that make our family process medications differently, so we have compromised and stayed with a more conservative vaccination schedule." I then gave the family information from reputable sites like the CDC and even researchers who are looking at improving vaccines.
So, that day, I did my duty as a nurse. Supplying folks with valuable information and letting them make their own choices. However, my responsibility as a mom is different than my mission as a nurse. When we moved from Idaho to Nevada, they told us our kids had to receive a certain amount of vaccines to be allowed to enter into school. After one kid received 8 vaccine rounds in one day, some in combination, less than a year later she developed schizophrenia. One neurologist told us if her disease course did not change, she was headed towards a vegetative state. Did the vaccines cause her condition or would it have happened anyway? The CDC website has informed me that this very line of questioning is why it has been so hard to determine exact vaccine injury in many cases. The good ol' what came first the chicken or the egg, question. I was so distraught by the neurologist's predictions that I immediately went to the psychiatrist and said, "There are some isolated studies out of South America that show some chain-smokers at high risk for schizophrenia never develop the disease or some with schizophrenia experience relief from consuming nicotine. I am going out to buy my daughter her first pack of cigarettes, or you can prescribe clozapine". The doctor laughed and said, "Ok, Ok, let's try the clozapine." So he prescribed the "grand-daddy" medication of them all. The drug with a black box warning that makes it harder to get than narcotics and yet changed our daughter's life, and she began her recovery. I remember feeling then that I was also playing the "would you rather" game. Would I rather have my daughter develop lung cancer or potential agranulocytosis? Side-effects of cigarettes versus side-effects of clozapine? Although she has had a few side effects from clozapine, mostly from its antiadrenergic properties, it has been a life-changer for her.
So the objective part of my left brain accepts that according to science, vaccines are some of the safest medications out there. But my right-brain momma side sees that the whole vaccination protocol is bound to the scientific method. And the scientific method is designed to gravitate toward the "mean" automatically excluding the outliers in its approach. So what is an outlier? Remember the time you were told you didn't need an umbrella or jacket because, statistically speaking, it was not supposed to rain? Then you wore your blue shorts, purple tank top and ended up in a deluge that soaked you down to your underwear. That event involved a time when an outlier became a major player. The scientific community is aware of the dreaded outliers and are often at odds on how to include the "little guys." Thiese, Arnold,& Walker 2015 state:
Traditionally, outliers were excluded from analyses because they were thought to be unduly influencing the statistical model, particularly in studies with small sample size. While this may be true in some instances, researchers may consciously or unconsciously exclude valid data that don’t fit a pre-defined data pattern or hypothesis, therefore committing an error. This may be a simple error that will have minimal impact on results, or it can be a fatal error, which will completely invalidate results. Arguments for identification and omission of outliers are common; however, there is little consensus on the appropriate treatment of an outlier. The most comprehensive approach is to analyze data with the final observations included and run the second set of analyses excluding these data.
So, what is to be done about the outliers, the misfits, the events that do not round-up towards the mean in a scientific study? According to the article, it's better to include them anyway and see if the results are similar. Simple, right? Except in some studies the researchers do not use this methodology. Maybe its time for research studies to be scrutinized and standardized themselves. This would appease my left and right brain immensely and limit the "Would you rather" feeling.
There is also promise in the field of pharmacogenetics. Pezeshki, Ovsyannikova, Mckinney, Poland, &Kennedy state:
"Recent advances in high-throughput technologies have enabled scientists to apply systems biology approaches to collect and integrate increasingly large datasets that capture complete biological changes induced by vaccines, and then decipher the complex immune response to those vaccines".
It looks like there is hope in the future for all of us "outliers" with genetic differences that detoxify everything from medications to environmental toxins differently.
So, did the dad at the beginning of this anecdote decide to vaccinate his sweet baby? I never did find out and I did so on purpose. The general public should be allowed the freedom to choose to vaccinate or not vaccinate. After all, we are all playing the "would you rather" game to the best of our abilities. Until statistical tools become more standardized in the research community, I continue to pray for the outliers AND I always carry an umbrella in my car.
References:
Thiese, M. S., Arnold, Z. C., & Walker, S. D. (2015). The misuse and abuse of statistics in biomedical research. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4401313/
Pezeshki, A., Ovsyannikova, I. G., McKinney, B. A., Poland, G. A., & Kennedy, R. B. (2019, March). The role of systems biology approaches in determining molecular signatures for the development of more effective vaccines. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/30700167
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