Jeanna Reed of AIM (Autism is Medical) and Lisa Joyce Goes who is the Contributing Editor for Age of Autism, Co-Founder of The Thinking Moms' Revolution, and Co-Author of the book, The Thinking Moms' Revolution, recently visited Dorothy and Alex Spourdalakis. Dorothy is Alex's mother and Alex is a 14-year-old boy with autism, who is now in his 22nd day at the Loyola University Medical Center in Chicago, Illinois.
Lisa, a mother of a child with autism, was wondering how Alex was keeping it together. She observed that, "As he rocked naked on a bed amidst a room full of strangers, he presented only sensory problems, which he self-regulated by chewing on a strip of sheet from his bed. Despite Loyola's advertisement of medical professionals that are "always in reach," there was nary an autism specialist among the group. No therapists. No BCBAs to educate the staff handling him. No occupational therapy. Not even a chewy tube to help facilitate his need to bite."
According to Lisa, Jeanna asked the hospital staff, "...what is the medical plan in place for Alex?" Prior to her question, there had been conversation about Alex's constipation and uninvestigated bowel issues. The hospitalist responded, "While I cannot do the procedure today, I can at least introduce Miralax." Jeanna questioned the point of indroducing Miralax, since magnesium citrate was already attempted and did not work. Jeanna proceeded to ask the hospitalist, "What are you treating, though? Have you considered an X-ray, CT scan, scope?" Lisa wrote that the doctors just shrugged their shoulders.
Jeanna remarked that the psyche/behavior model Alex's medical team has enforced thus far did not appear to be working since Alex remained in a state of agitation, experiencing only fitful and short-lived sleep as well as extreme pain. When the doctors suggested giving Alex something for his allergies to see if that would help with the discomfort, Agatha, Alex's godmother and Dorothy's only support asked, "But how do you know? How do you know what is bothering Alex when you do not test? Why do we give him medication after medication without knowing?"
Jeanna started to name many of the medical issues that could be at play. She said, "He could have GERD, duodenitis, esophagitis, ulcers in the small intestines, colitis. How can we know if we don't test," and added, "Well, clearly the rash is subsiding, so adding another med would not work when weighing the risk/benefit ratio." The hospitalist nodded in response. Jeanna then went on to say that, "He could have an underlying mitochondrial or metabolic disorder. You are feeding him all protein and he may have an underlying metabolic disorder. How do we know if his system can handle that?"
When one of the staff then said, "Autism is very much a mystery, you have to understand," Lisa responded with a firm, "No! No! It's not. It's a medical illness that causes bad behavior. All you have to do IS READ*!" No gastrointestinal or mitochondrial work ups were scheduled during Jeanna and Lisa's visit.
In Pediatrics Evaluation, Diagnosis, and Treatment of Gastrointestinal Disorders in Individuals With ASDs: A Consensus Report, some of the top Gastrointestinal (GI) and mitochondrial specialists in the United States concluded: The care of individuals who are nonverbal or have difficulties in communication or who display self-injurious or other problem behaviors presents special challenges. Nevertheless, the approach to evaluation and diagnosis of possible underlying medical conditions, in particular gastrointestinal disorders, should be no different from the standard of care for persons without ASDs. Management of cooccurring gastrointestinal problems in individuals with ASDs usually begins with the primary care provider and may eventually warrant multidisciplinary consultation.
Lisa believes that, "Diet, metabolic processing and methylation are not an issue for modern pharmaceutical medicine. And children like Alex pay as a result." The Indiana Coalition for Vaccination Choice commented, "It is disturbing how having a diagnosis of "autism" creates such a confusion among physicians in diagnosing and treating the intricate medical issues also involved. We suggest dropping the "autism" diagnosis altogether or at least putting it at the bottom of the very long list. Maybe then these individuals will be seen as humans in need of assessment, testing, treatment and care."
Alex Spourdalakis has now spent 22 days at Loyola with debilitating GI pain. The autism community is horrified and galvanized to action by the lack of care he has received and has been asked by the Age of Autism Team to please contact customer service for the Joint Commission, a governing body that accredits medical institutionsat: 630-792-5800. In a post dated today, the Age of Autism team wrote, "Politely tell them you are calling about the lack of medical care for Alex Spourdalakis in the Loyola Healthcare system. They need to receive as many calls as Loyola did 3 days ago. They need to know what is happening behind the doors of the institutions they are accrediting."
They need to know that a teenager's life may be at risk because of medical negligence occurring at Loyola University Medical Center. A child devolping typically would have already had tests of every sort to determine what is wrong.
To read about Day 19 of Alex's suffering see: http://www.ageofautism.com/2013/03/day-19-loyola-chicago-hospital-locks-down-autistic-patient.html
To read more about Lisa Joyce Goes see: http://www.examiner.com/article/we-took-a-healthy-baby-who-came-into-this-world-well-and-we-made-him-sick
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