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Written Public Comments for November 15, 2013 IACC Strategic

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Written Public Comments for November 15, 2013 IACC Strategic Written Public Comments IACC Strategic Plan Update Workshop November 15, 2013 List of Written Public Comments Linda M. Amity .............................................................................................................................................. 4 Eileen Nicole Simon ...................................................................................................................................... 7 Eileen Nicole Simon ...................................................................................................................................... 9 Marian Dar .................................................................................................................................................. 10 Donna Knepple ............................................................................................................................................ 11 Benedetta Stilwell ....................................................................................................................................... 13 Martha Moyer ............................................................................................................................................. 14 Benedetta Stilwell ....................................................................................................................................... 15 Eileen Nicole Simon .................................................................................................................................... 16 Eileen Nicole Simon .................................................................................................................................... 17 Eileen Nicole Simon .................................................................................................................................... 18 Yadira Calderon ........................................................................................................................................... 19 Jill White ...................................................................................................................................................... 20 Amanda Hammond ..................................................................................................................................... 22 Eileen Nicole Simon .................................................................................................................................... 24 Eileen Nicole Simon .................................................................................................................................... 25 Wendy Fournier .......................................................................................................................................... 26 Jill Escher ..................................................................................................................................................... 27 Kerry Lane ................................................................................................................................................... 29 Carmen Allen ............................................................................................................................................... 30 Stewart D. Simonson ................................................................................................................................... 34 Rosanna Armendariz ................................................................................................................................... 35 Autumn Stevens .......................................................................................................................................... 36 Eileen Nicole Simon .................................................................................................................................... 37 Ann Z Bauer ................................................................................................................................................. 38 Caroline Rodgers ......................................................................................................................................... 39 Eileen Nicole Simon .................................................................................................................................... 40 Eileen Nicole Simon .................................................................................................................................... 41 Laurie Sparks-Dennison .............................................................................................................................. 46 Laura Adams................................................................................................................................................ 48 2 Laura Adams................................................................................................................................................ 49 Linda Varsou................................................................................................................................................ 50 DT Welsh ..................................................................................................................................................... 52 Gina Pepchinski ........................................................................................................................................... 53 Teresa Holman ............................................................................................................................................ 54 Belinda ........................................................................................................................................................ 55 Maria Lujan Ferreira .................................................................................................................................... 56 Eileen Nicole Simon .................................................................................................................................... 58 Jill Rubolino ................................................................................................................................................. 59 3 Linda M. Amity July 3, 2013 Subject: Requests for Public Comment To Whom it May Concern: Hello. Thank you for the opportunity to share our children’s chronic health needs and experiences with you, in effort and in hope for creating a mainstream medical system of appropriate medical evaluations and safe treatments for them. I am the Mother to my now 15 y.o. son and 12 y.o. daughter, both of whom are on the spectrum of “autism”. Today, I share with you copies of some of their test results that we have completed over the past decade, which span many professionals in different states across the country, as we looked for those medical professional specialists who were trained within the specialty of “autism”, to try to help our children with the chronic health issues they have suffered with all of their young lives. This search was exceptionally difficult, for as you may know, there are far too few medical professionals who have any “autism specific” medical expertise, to serve the hundreds of thousands of our children who are suffering in physical pain unnecessarily. Starting with our family practitioner from our children’s birth, with chronic ear infections, developmental delays but then developing G.I. health problems consisting of such acidic stools passed that if the stool was on their skin for even the shortest length of time, resulted in painful and sore burning, but most concerning, malnutrition due to malabsorption of food, failure to thrive and grow properly. One biomedical doctor wrote a book appropriately named, “Children with Starving Brains”, which speaks to the medical needs of our children. Not having this knowledge, our family doctor explained that “diarrhea was a part of “autism” and sent us on our way home. Like many parents of children with “autism”, we learned from other “like” parents who were ahead of us on this journey to find medical professionals who could help us. Our first trip was to see a Pediatric G.I. who specialized in treating children with “autism” in New York, [PII redacted]. We drove to see him in July, 2003, for scopings with biopsies, which returned the confirmation of illeal lymphoid nodular hyperplasia, also termed enterocolitis. In efforts to spare other “like” children precious time, I later became a parent mentor as well, to share vital information I had learned the long and hard way. I know many families who took their child to our own Children’s Hospital of Pittsburgh, who had their child undergo the same scoping procedure for the same symptoms only to leave with a false negative report of findings, no help or appropriate diagnosis or treatment because even though they saw a Pediatric specialist in G.I. health, mainstream medical professionals are not researching nor are they trained in “autism” and the chronic health needs of our children. In other words, traditionally trained Ped. G.I.’s do not scope into the ileum where often our children’s G.I. damage is. Part of the initial consultation with [PII redacted] involved his asking us if our children “postured” their bodies, contorting them in efforts to relieve the pain. Laying their bellies across the arms of couches or the hard wooden seats of a dining room chair, screaming in pain, self-injuring, biting, hitting themselves 4 in the head, or striking out at their
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