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Sierra Boehm

Talking About Sudden Unexpected Death in Epilepsy (SUDEP) - Webinar - Oct. 23, 2013 - 0 views

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    Register for this event

    What:
    Talking about death, or the possibility of death is hard even for doctors and nurses. But talking about sudden unexpected death in epilepsy (SUDEP) is an important first step to understanding it. During this webinar the presenters will discuss when and how nurses and doctors should ideally talk about SUDEP with a patient and their family, what people with epilepsy and their families should be asking their doctors. Also included will be a review of what research studies say those living with epilepsy and their families want to hear from doctors about SUDEP. A review the ethics of SUDEP disclosure will also be included. Finally, the presenters will explore the perspective of those who are bereaved by the loss of a loved one to epilepsy and what information they believe should be disclosed.

    When:
    Wednesday, October 23, 2013
    1:00 pm Mountain

    Cost:
    $25.00 suggested donation
Roger Holt

Cerebral palsy doctor Jan Brunstrom has cerebral palsy | ksdk.com - 0 views

  • One of the busiest doctors at St. Louis Children's Hospital, she and her team treat kids with cerebral palsy, more than 2,000 a year. They come from as far away as Europe and on this day, she had patients from Philadelphia and Cedar Rapids.
  • Cerebral palsy is the term for a non-contagious group of disorders that affect a person's ability to move their limbs, maintain posture and in some cases communicate. These children face many challenges and no one knows that better than Dr. Brunstrom. She too has cerebral palsy.
Roger Holt

Doctors Push For Fathers To Become Involved With Their Autistic Children's Care - NY1.com - 0 views

  • As autism becomes the fastest-growing developmental disability in the United States, doctors in a new documentary express concerns that that fathers of these children with special needs are sometimes reluctant to face the issue. NY1's Cheryl Wills filed the second part of this report. Emotions are raw and tears are flowing during a recent retreat for fathers of autistic children covered in a new documentary called "Autistic Like Me: A Father's Perspective."
Roger Holt

Every school needs a doctor, pediatricians say | Reuters - 0 views

  • (Reuters Health) - Despite no federal or uniform state requirements to do so, all school districts should have a doctor to oversee school health services, according to a policy statement from a group of American pediatricians. "Our hope is that a policy statement like this will start to get people talking," said Dr. Cynthia Devore, a co-author of the statement from the American Academy of Pediatrics (AAP).
Sierra Boehm

Webinar Presenter Recruitment - Request for Presenters - Now until July 31, 2013 - 0 views

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    The AUCD is hosting thier fourth student webinar series. This webinar will focus on aging with an intellectual disability, topics could include health disparities or health promotion.  The next webinar will take place on Wednesday July 31 from 12:00 pm - 1:00 pm Mountain.

    The webinar is sponsored by The Arc for People with Intellectual and Developmental Disabilities.  Our last webinar participants included doctors, a dentist, therapists, students, Arc chapter employees, and state/local health department employees- so a pretty broad audience. The webinar will be live captioned.

    If you are a student or know of any students who might be interested in presenting, please let us know. Each presentation is 15 minutes long (3 presenters) with five minutes of questions at the end.

    Anyone interested in presenting needs to contact Alicia Dixon-Ibarra (dixona@onid.orst.edu), Kerri Vanderbom (mcmurtrk@onid.orst.edu), or Mara Nery (nerym@onid.orst.edu) with your presentation topic.
Roger Holt

The Future of Farmer Prosthetics - Modern Farmer - 0 views

  • When David Blum got caught in a cement silo drill and had to have his lower leg amputated, his doctor told him he would never work his farm again. Blum looked at his farm — his alfalfa, his corn, his soybeans and his cows — and had some choice words for the doctor. “Don’t let anybody tell you the word no,” he said. Today, Blum is one of many farmers who works every day with a prosthetic device, but it hasn’t been easy.
Sierra Boehm

Understanding SUDEP Research and the Role You Can Play - Webinar - Jan. 15, 2014 - 0 views

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    Register for this event

    What:
    Ending sudden unexplained death in epilepsy (SUDEP) is a shared responsibility. And you can help! Any successful effort will require doctors, people with epilepsy, nurses, researchers, coroners and those bereaved by the loss of someone to SUDEP to work together. It will require collaboration across many different organizations over many years. This webinar will begin with a look at what research is telling us about the possible causes as well as future prevention methods and cures for SUDEP. The second part of this webinar will explore how you or a loved one can help by joining a study. We will also discuss the support needs of research study participants and the resources available to them. The presenters will also briefly discuss the SUDEP registry and its role in SUDEP research.

    When:
    Wednesday, January 15, 2014
    1:00 pm Mountain

    Cost:
    Space is limited. A $25 donation is suggested.
Roger Holt

Talking With Your Doctor And Other Health Care Professionals - 0 views

  • Many young people have found the GLADD approach to talking with health care professionals to be very helpful.
Roger Holt

Helping autism's kids find a voice | Full Story - 0 views

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    Nashville, Tennessee (CNN) -- When Ryan Wallace got a diagnosis of autism at age 2, his parents never thought they'd hear him speak. "He used to make noises. When he wanted something he would just point," says Ryan's father, Gerald David Wallace. "Or he would scream." Therapists say that's not unusual for someone with Ryan's condition. According to doctors, many children with autism have difficulty understanding information from the outside world.
Roger Holt

Autism therapy: Doctors sued over 'dangerous' autism treatment - chicagotribune.com - 0 views

  • The father of a 7-year-old Chicago boy who was diagnosed as a toddler with autism has sued the Naperville and Florida doctors who treated his son, alleging they harmed the child with "dangerous and unnecessary experimental treatments."
  • James Coman and his son were featured last year in "Dubious Medicine," a Tribune series that examined risky, unproven treatments for autism based on questionable science.
  • The defendants — family-practice physicians Dr. Anjum Usman of Naperville and Dr. Daniel Rossignol of Melbourne, Fla. — are prominent in the Defeat Autism Now! movement, which promotes many of the alternative treatments the Tribune scrutinized. Both have spoken to groups of parents at autism conferences and trained other physicians in their methods.
Roger Holt

Decision Near In Ethics Probe Of Doctor Who Triggered Autism-Vaccine Fears - Disability... - 0 views

  • The results of an ethics investigation into the doctor whose controversial research sparked fears of a link between autism and vaccines are expected this week.
Roger Holt

NeuroLogica Blog » Some Good Autism Reporting - 0 views

  • Last week the Chicago Tribune printed a long piece on biological treatments for autism by Trine Tsouderos and Patricia Callahan, and an excellent piece it was. They clearly understand what the real story is – a subculture of fringe doctors and others who are essentially doing unethical experiments and children with autism. They are exploiting desperate parents (who then sometimes contribute to the exploitation of the next desperate parents) who are seeking any possible help for their children. Of course the desire of parents of autistic children to do everything they can to help them is perfectly understandable. But there is a quagmire out there – an insidious trap waiting to ensnare the vulnerable, in the guise of professionals offering help. So-called DAN (for Defeat Autism Now) doctors and others are offering a slew of experimental and often highly implausible treatments for autism.
Roger Holt

The Thinking Person's Guide to Autism: Identifying and Avoiding Autism Cults - 0 views

  • A child's autism diagnosis can mess with parents' heads. Media portrayals of children with autism and their adult spectrum-mates dwell almost exclusively on negatives and challenges, so when a parent is told that their child is autistic, they are usually incredibly upset. It doesn't help when doctors lack the bedside manner to soften the emotional impact of their diagnoses, or have no information about contemporary autism therapies and resources. When that happens, parents are both freaked out and flapping in the wind. Their child's doctor was supposed to give them answers and guidance, but instead upended their lives, then shoved them out the door. No one can explain why they have a child with autism, and they know nothing about autism. They are emotionally reeling, angry with the medical establishment, and hungry for any information that will help their child.
Roger Holt

Doctors Get New Recommendations For Diagnosing Disabilities - Disability Scoop - 0 views

  • A major pediatricians’ group is issuing new guidelines for physicians diagnosing intellectual and other developmental disabilities. In a clinical report published Monday in the journal Pediatrics, the American Academy of Pediatrics updated its recommendations, which were first released in 2006. Specifically, the new report emphasizes advances in genetic testing in recent years that can aid in providing a more precise diagnosis for children with various delays.
Roger Holt

Some Doctors Still Dismiss Parents' Concerns About Autism : Shots - Health News : NPR - 0 views

  • Most children with autism get diagnosed around age 5, when they start school. But signs of the developmental disorder may be seen as early as 1 year old. Yet even if a parent notices problems making eye contact or other early signs of autism, some doctors still dismiss those concerns, a study finds, saying the child will "grow out of it." That can delay diagnosis and a child's access to therapy.
Roger Holt

Q&A: Dr. James M. Perrin, president-elect of the American Academy of Pediatrics - Healt... - 0 views

  • Last month, Dr. James M. Perrin, a professor of pediatrics at Harvard Medical School and the Massachusetts General Hospital for Children, became the president-elect of the American Academy of Pediatrics, a professional group of 60,000 doctors. A primary care physician, Perrin is particularly interested in addressing chronic childhood illness during his three years of leadership at the academy, first as president-elect, then president, then president emeritus. What do you think are the biggest health issues facing today’s kids? Childhood obesity and other chronic health conditions: the continuing growth in childhood asthma, and the tremendous growth in mental health conditions and developmental conditions like autism. We’ve got three or four major epidemics really growing among children and adolescents in America.
Roger Holt

Parents of micro preemie face heart-wrenching decisions - Tampa Bay Times - 0 views

  • In between those scenarios is a zone between life and death, between viability and futility. If a baby is born after the 22nd week of pregnancy but before the 25th, not even the smartest doctors in the world can say what will happen to it. New technologies can sometimes keep these micropreemies alive, but many end up disabled, some catastrophically so. Whether to provide care to these infants is one of the fundamental controversies in neonatology.
Roger Holt

It's Time for School: Building Quality Education Programs for Students with ASD - 0 views

  • It's Time for School: Building Quality Education Programs for Students with ASD Wed, Mar 20, 2013 10:00 AM - 11:00 AM PDT School Districts across the country are struggling to meet the needs of students with ASD. Budgets are tight making it is hard to think about being proactive when there are not enough dollars to even cover day-to-day operations. However, districts have found that developing quality education programs for students with autism can actually result in substantial savings. During this presentation Dr. Leaf will discuss factors that contribute to the development of classrooms that provide effective educational for students with ASD. Dr. Leaf will share what he has found to be indicators of a "good" school district, teacher and classroom. Dr. Ronald Leaf is a licensed psychologist who has over thirty-five years of experience in the field of autism; he worked with Ivar Lovaas while receiving his undergraduate and doctorate degrees at UCLA. He is co-author of: A Work in Progress; Building Quality ABA Educational Programs for Students with ASD; Sense and Nonsense in the Behavioral Treatment of Autism and Crafting Connections. Dr. Leaf has consulted nationally and internationally with families and school districts; he is Director of Autism Partnership.
Roger Holt

Not Just for Boys: When Autism Spectrum Disorders Affect Girls - 0 views

  • An autism diagnosis is relatively rare in girls; Asperger's is even rarer. Boys outnumber girls with autism by 4 to 1; in "high functioning autism" and Asperger's, the gender ratio is estimated to be 10 to 1.1
  • For years autism was seen as primarily a male disorder, certainly not the only developmental disorder to affect more boys than girls. But some researchers are asking whether girls with ASD are going undiagnosed, especially those at the high-functioning end of the spectrum like June's daughter? Do girls simply do a better job masking their symptoms? Are their symptoms being missed by diagnostic tools that may be better suited to boys? As researcher John N. Constantino M.D. put it, are doctors looking at girls through "boy-colored glasses"?
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