This story was shared with me, recently, by a mother who chooses to remain anonymous, about her experience with obtaining titers for her child. In her own words…
I have always wanted to be a mother, for as long as I can remember, having children has always been a non-negotiable part of who I am. My husband and I were fortunate to have a healthy baby boy (all 10 pounds of him!) in 2005. An equally large “little sister” made our family complete in 2008. My husband and I took precautions to keep our children healthy, including vaccinating them on schedule. Our son had all of his vaccinations through age 8 and our daughter had all of them up to age 5. We did yearly flu vaccinations to keep them from getting illnesses that could otherwise be prevented. That changed in 2013, after my daughter had what I believe was an adverse reaction to the Flu Mist vaccine. Read on.
We were surprised when our son began showing signs of motor tics around age 5. Not to worry, said the neurologist, “The best thing is to do is… nothing at all because most tics go away in a year, and you shouldn’t worry about these little things” he continued. It never occurred to us that these tics could be related to vaccination.
But they didn’t wane; in fact they increased. More worrisome was that the motor tics were soon joined by vocal tics. Diagnosis: Tourette Syndrome.
When our daughter started excessive eye blinking, we trotted off to the ophthalmologist and were told that eye blinking was a common occurrence. Furthermore, drawing any parallel between our son’s Tourette’s and her blinking was irrational. Again, no one, including my husband and me, considered that they might be related to a vaccine.
As health-conscious, compliant parents we kept on track with our children’s vaccine schedules, never questioning vaccine safety,efficacy or possible side effects.
In the fall of 2013 we returned to the Pediatrician’s office for well-child visits, and this time chose the Flu Mist vaccine, to avoid a needle stick. We left the office feeling like we had done everything we were supposed to do keep our children in the best possible health. I even got the Flu Mist myself while I was there- I loved how concerned and efficient our pediatrician’s office was to take care of me in the same visit.
Several hours after we returned home my children were playing in the living room, when I heard my daughter scream, “Mommy! Mommy! I can’t control my leg- make my leg stop!” She was thrashing on the floor, her leg appearing as if an invisible force was causing it to jerk violently in and out. Her foot came up towards her buttock and then shot straight out. This jerking and kicking continued for minutes, and when I could do nothing to stop it, my daughter became increasingly upset. Her leg continued as she were trying to kick something as hard as possible. She was crying and screaming and neither she nor I had any idea what was happening to her body.
I called the pediatrician’s office to see what they had to say- I wondered if it could be a reaction to the Flu Mist. The curt response was, “She has a tic disorder, what do you expect?” I replied, “No, she blinks excessively- that is all that there is to her to her tic disorder.” Why wasn’t the doctor more concerned?
I later learned that tics can be an adverse reaction to a vaccine. I also learned that an adverse reaction can be immediate or delayed, making it difficult to draw any conclusions about cause and effect relationships. Most importantly, I learned that the U.S. government provides a way to report an adverse vaccine reaction through the pediatrician. I asked my doctor to file an adverse reaction report, but was told by the nurse that my pediatrician would not support that action.
My daughter’s leg jerking was my wake up call. It really grabbed my attention. I never wanted to experience anything like it again, nor my daughter.
My journey to help my children be as healthy as possible led my family to a specialist, who, after extensive laboratory testing, found underlying auto immune conditions in both of my children. My son’s immune levels and markers are significantly worse than my daughter’s immune levels, just as his motor and vocal tics are worse than her occasional bouts of excessive eye blinking. My research told me that vaccines are counter-indicated for individuals whose immune systems are compromised, as my children are. Thus, I made the decision to decline the flu vaccine for all of us in 2014. We had a few colds, but not the flu.
Our daughter, age 6, was due for some vaccine boosters. According to the American Academy of Pediatrics (AAP) vaccination schedule, she should receive another dose of DTap, MMR, varicella and polio by May of this year, in order to remain in public school in the Commonwealth of Pennsylvania where we live. I noticed that the extensive blood testing done contained titers on several of these diseases, and that hers were above the levels necessary to show immunity.
In March, we returned to our pediatrician to discuss vaccinations. I was very concerned about continued vaccination with my daughter’s previous vaccine reaction to the Flu Mist, and her underlying autoimmune conditions. Even though I had acceptable titers from the measles, mumps and rubella that were less than a year old, the doctor insisted that he needed to draw current titers. Why?
My doctor’s initial response to my concern about titer testing was, “Insurance won’t cover these tests.” Hmm… I quietly wondered to myself, our insurance DID cover the earlier testing, the results from which I gripped in my sweaty palms. I didn’t confront, I was passive, responding “I don’t mind paying if that is the case.” His next response surprised me, “I don’t think there is a lab in this city (1 million metropolitan area) that can do these tests. I’m not even sure where to send you for this blood work.”
He then excused himself,and I heard him consulting with another pediatrician in the practice. When he returned, he asked me to contact the developmental pediatrician to ask where they send their patients for blood titers. I left the office with no prescription.
I called to confirm that our local children’s hospital could do all the blood titers required, and called back to report to my pediatrician. “Ok, I’ll write the script and you can pick it up on Monday.” This sounded like a good plan. But after so many phone calls on a Friday afternoon I was concerned that my pediatrician was not very well versed about vaccination after an adverse event or in the case of children who are immune compromised.
Monday I picked up the prescription for blood titers for the required vaccinations from the doctor’s office. It was folded, and in a sealed envelope- I didn’t even open it until I was home. Then that feeling of my blood pressure rising caught me as I read the bold words scrawled across the bottom of the prescription “Mother does not want to vaccinate child”
How could he write this? It was a lie! I asked him to draw blood and check the levels of existing immunity in my daughter to be able to see if she even NEEDED further vaccinations. I had NOT refused vaccination!
I calmed down and I googled “Parent refusal to vaccinate.” I was astounded to learn something that I couldn’t believe was real: there are medical processing codes for refusal to vaccinate!
Here are a few of them:
The ICD-9-CM Volume 2 Index entries contain back-references to:
V64.00 Vaccination not carried out because of
V64.01 Acute illness
V64.02 Chronic illness
V64.03 Immune compromised state
V64.04 Guardian refusal
V64.05 Parent refusal
V64.06 Patient refusal
V64.07 Religious reasons
V64.08 Patient had disease being vaccinated against
V64.09 Immunization not carried out because of other contraindication
My husband and I headed back to the pediatrician to find out why he chose these words and wrote them on the order for blood work. Does this say to the insurance company, “Don’t cover this test?” Is it a code that is sent to the CDC to track my child? Why didn’t he give me a code for “immune compromised state?”
Our long story short, the pediatrician agreed to change the code on the prescription for the titers. We had them drawn at our local children’s hospital and returned a few weeks later to our pediatricians office to find out that our daughter DID NOT NEED another dose of either the DTap, MMR, varicella or polio vaccine because her body had mounted an adequate immune response, that was still present. No need for a booster and no need for unnecessarily putting her at risk for another vaccine reaction.