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November 9, 2013 RE: Support The Inquiry Into The National Vaccine Injury Compensation Program (NVICP) Members of the Committee, I am a health care professional and mother of a vaccine injured son. Our journey began in the spring of 2004 when I gave birth to my only son, Luke who was born well connected, hitting all of his developmental milestones (95th+ percentiles) and appropriately communicated by the age of one. August 5th, 2005 Luke was injected with 9 vaccines during one well visit; Tripedia’s Diphtheria Tetanus Pertussis (DTaP) (3mcgs of thimerosal, 170 mcgs of aluminum), Haemophilus Inﬂuenzae Type B (HIB), Measles Mumps Rubella (MMR), Vericella, and Pneumococcal PCV 7 (125 mcgs of aluminum). Later Luke ran a fever and in the morning had a raised migrating rash. The following day Luke became hypothermic, blue lips, lethargic, and non-communicative. Our developmental pediatrician was not concerned and thought this “episode” was simply a virus that would pass. 2 weeks later Luke’s fever and rash subsided but he became disconnected and still would not respond to verbal or visual cues. The response from our developmental pediatrician described Luke’s new behaviors were a “phase”. January 10th, 2006 I consented to another round of vaccinations. Luke began to self injure, not sleep, constantly scream, cry, and still did not communicate. Now our developmental pediatrician thought something acute was occurring and this began a yearlong chase of dead end diagnosis, procedures and surgeries with specialty consults devoid of answers. After a year of inadequate care, our pediatrician surmised that Luke had autism and we should start Applied Behavior Analysis (ABA), which in his opinion was the only option of treatment, completely ignoring his biological condition. I was told my son’s prognosis would be to never speak again, never be out of diapers, and never live independently. The next three years I classify as the “dark ages”. My son was severely constipated, with bouts of post obstructive diarrhea. Luke would roll through periods of fever, rash and hypothermia consistently during this time, and even today he will have an occasional episode but they are now less frequent. Every mainstream medical professional ignored that my son was in pain, and my husband (M.D.) and I were not given answers how a well-connected child could become sick and acutely autistic without an exploration of cause. So we, his parents pulled his medical records in 2006 and began our own investigation with the hopes of helping our son. After reading Luke’s medical records, which plainly stated by his developmental pediatrician he was having developmental regression all the while telling me this was in a “phase”, clearly showed the acute regression occurred after his August 5th well visit. This was the ﬁrst time I even thought of a vaccine connection between my son and his mystery illness that was now being classiﬁed as autism. I then pulled the vaccine manufacture inserts and read the ingredients of known adverse events and realized the plausibility of vaccine induced autism or encephalopathy that resulted in a catastrophic chronic disability in our son, which was handled by incompetent developmental professionals. November 27th, 2006 Luke’s developmental assessment report showed 4th percentile in cognitive skills, 5th percentile in expressive language, and 7th percentile in personal/social skills to name the lowest 3 categories. December 4th, 2006 Luke began early intervention on an IEFP with supplemental home therapies that added up to 30 hours/week.
During the dark ages of severe autism, I left my career and became a full time student in rehabilitating vaccine injury. We turned our garage into an occupational therapy center, and our family room into a special education room. Our journey started with conventional protocols, which is the widely accepted approach of cognitive behavioral therapies. My son was in pain, and would not sleep so I knew in order to make gains we would have to get to the bottom of his biological disease processes. 75% of ASD patients also have sensory processing disorders, which interferes with the child’s ability to have a clear understanding of pain, temperature, spacial recognition, auditory, visual, and self awareness (Summit Professional Education, 2013). Couple that with deﬁcits in communication the process of discovery of Luke’s co-morbid chronic conditions became problematic, even today. May 3rd, 2007 occupational therapy summary sensory proﬁle (39 months of age) concluded; sensory processing, behavior and emotional responses, factor clusters: sensory seeking, low endurance/tone and oral sensory sensitivity. Also, in 2007 I began exclusionary diets mainly dairy and my son’s GI distress began to normalize. On May 21st, 2007 I ofﬁcially ﬁred Luke’s developmental pediatrician who once again consulted me to another specialists stating in his chart; speech regression (true), conductive hearing loss (false), eustachian tube dysfunction (false), with the recommendation of bilateral myringotomy tympanostomy (unnecessary), which I did not consent to. August 2007, Luke began taking supplements (multivitamin, probiotics, vitamin C, and MB12), and with the implementation of vitamin MB12 Luke for the ﬁrst time in three years answered appropriately to the question “What is your name?”. Luke was almost 5 when he began speaking again and I still cry with joy that he found his expressive voice. March 5th, 2008 Luke’s language assessment; auditory 19th percentile, expressive 12th percentile, total language 13th percentile, Goldman Fristoe test of articulation 49th percentile. March 10th, 2008 Luke’s personal/social adaptive and cognitive skills (49 months of age); personal/social -1 Z-Score, adaptive skills -1.6 Z-Score, cognitive skills -2.13 Z-Score. His sensory proﬁle was also representative of poor functioning. But Luke was making progress, and we were making gains healing his biological pathology mainly in his gastrointestinal system, and sensory integration. August 2009 to May 2010 we hired a retired elementary school teacher to home school Luke during these pre-school years. In my area of residence there is not a facility that would accept Luke and his disability at his age (in diapers) so this was our only option. While my son was in “school” I began to read the research from both sides of the argument regarding vaccines and autism. In December of 2009 I ﬁled with the Vaccine Adverse Event Reporting System (VAERS) documenting Luke’s 2005 injury. March 2010, Luke’s words started to come back, but the syllables were backwards, and eventually so were his 2 to 3 word sentences. So, in my research I found this was a symptom of damage to the central auditory nervous system. I successfully gained a referral to test Luke’s brain, which conﬁrmed a 90% deﬁcient in this area of neurological circuitry. Injury to the auditory nervous system occurs in patients who have suffered from a traumatic brain injury or from heavy metal toxicity (encephalopathy). My son’s medical history charts well visits, so that was my conﬁrmation that the neurotoxic ingredients mainly thimerosal and aluminum mixed with live viruses overloaded my sons system(s) creating a vaccine induced encephalopathy, resulting in the diagnosis of autism. After this conﬁrmation I contacted a National Vaccine Injury Compensation Attorney, then quickly discovered Luke was well outside the statute of limitations (3 years) to ﬁle, yet another injustice to this system. I could write pages and pages of assessments, and therapies that could bring you to present day. But this snapshot of our journey leads into my experience with the NVICP . We have spent tens of thousands of dollars each year for Luke’s care because autism therapies, treatments, and testing are rarely if ever covered by insurance providers. My son dropped his autism diagnosis early this year (2013), and has deﬁed all the conventional prognosis of his earlier developmental pediatricians and specialists. He is in recovery and like an alcoholic or a patient with hypertension if he is not managed or if he is exposed to certain environmental toxins he will regress. This means an adherence to a strict protocol in schedule,
supplementation, diet and therapies. Luke is now 9 and has not lived a “normal” life, neither has my husband and I since his acute regression after vaccine injury. Too many children and too much suffering has long been well understood but neglected by our health authority all in the name of the collective greater good deliverance of the theory (myth) of vaccine induced immunity. Our children, my son is collateral damage to this agenda, which has wiped clean the ability of so many families to live a peaceful existence here in the United States. We have functioned with little support and no guidance by the CDC, HHS and other health agencies during our journey of vaccine injury recovery, which does exist. In spite of all these obstacles our children are getting better due to the diligence of a few doctors and a large parental body that tirelessly shares their knowledge with other victims. Now is the time to stand for our children and demand that the documents be made public, not just in the circles of vaccine injured communities but a complete unveiling of the crimes of concealment so good and productive scientiﬁc, and medical protocols can be put in place to protect preceding vulnerable children and the ones who are injured can ﬁnally receive adequate care that is covered by insurance providers. To continue to deny these criminal acts, and adequate care to so many children, now 1:50 is a moral erosion of this nation and further disintegration of trust for the government health authority. Thank you for this opportunity to testify in support of an inquiry regarding the injustice of the National Vaccine Injury Compensation Program (NVICP).
Reference Summit Professional Education. (2013). Autism and Sensory Processing Disorder. Retrieved from http://summit-education.com/general/autism-and-sensory-processing-disorder/