The Chronic Painconnector

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The Chronic PainConnector

(A Biennial newsletter for families of children, adolescents and young adults living with chronic pain)

Volume 1, No. 02/13

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Fall 2013

Bi-Annual Newsletter

Welcome to the second edition of The Chronic Pain Connector. Thanks for being interested in what we have to say. To those of you that provided feedback and your endorsement comments, Thank you! Keep sending us your suggestions and feedback:
Table of Contents

1. Events
2. E-Connect with Us
3. In the World of Chronic Pain News
4. Research
5. ILC in the News
6. Community Events
7. In Remembrance

ILC PEER SUPPORT CHAPTER EVENT:
Families joined ILC Peer Support Event on Saturday, May 25th from 1:00 to 4:30 pm. – A full schedule for Parent-to-Parent, Tweens'n Teens+, andfinishing off the afternoon with a consult visit with Digisplint Inc.
An inspiring afternoon of camaraderie and sharing. Location: On the water’s edge at the foot of Navy Street in the Oakville Museum (main floor meeting rooms and gardens), 8 Navy St, Oakville, ON, L6J 2Y5.
Tanya Foyle hosts fundraising for Ehlers-Danlos Syndrome (EDS):
• Third party fundraiser for Oakville family living with Ehlers-Danlos Syndrome (EDS), Saturday, Sept. 14, Shakers Tap and Grill from 1 pm to 1 am, includingMike Holmes and his crew, Mike Shotton, Gord Depp from the Spoons, Holly Cole, Platinum Blondewith fantastic help from Oakville’s own AUDIOMAN and more. The ILC was thrilled to be included as part recipient of funds raised in this event with a donation of just under $2,000.00. Funds will be used to support the ILC’s Halton and Peel Chapter Peer Support activities. A heartfelt Thank you to Tanya and all the volunteers she rallied for an amazing event!
Peer Support
• ILC Halton Region and Friends Family Peer Support event, Saturday, Sept. 21st. – A group of teens and young adults and their parents connecting on the importance of reaching out to not feel alone in a comfortable setting after adjusting to the first two weeks of school. Families wishing to participate in the Halton/Peel location events, email . Stay tuned for other locations and exciting news about interactive therapies during peer support.
A Taste of Mindfulness Charity Lecture: Oakville
• Thank you to Robyn at Creating Space Yoga Studio and Dr. Stephane Treyvaud and the attendees of A Taste of Mindfulness Charitable Lecturefor the wonderful support of ILC’s charitable programs with the donation of $1,560.00 on September 28th. For more information about other events like this and programs offered, visit:
Christopher’s Challenge and a Mom with heart – Niagara Falls
Let's help Christopher Raise Awareness about EDS! So that more is learned about this disease, donate to support the ILC Research initiative at Thank you!


Christopher's Challenge with Ehlers-Danlos
After many many months, Christopher has been diagnosed with Ehlers-Danlos!! We are hoping to make this syndrome aware!!
Scientific Workshop – October 4th and 5th in Oakville:
• The ILC Foundation hosted a scientific workshop as a discussion for leaders toBridge Gaps: Expert Leadership and Vision to Establish Best Care Practice Guidelines for a broad group of complex chronic pain diseases - Where Quality of Life Meets The Art and Science of Medicine.
The ILC organized and presented the Difficult to Diagnose Disease Program (DDD Program) as a method to bridging gaps in best practices. Based on the experience in providing peer support to a wide population that suffers tremendously with Ehlers-Danlos Syndrome (EDS), theDDD Program initially is focused on this connective tissue disorder. Twenty-six multidisciplinary medical and allied health professionals attended from Halton, Hamilton, London, the GTA, Quebec and the United States to begin the process. Stay tuned for a full report on outcomes.
Thank you! Erika Crawford & Family Pay It Forward with Rosehill Liquidation – October 12th in Brantford County:

Third party awareness and fundraising event – Saturday, November 2nd in Oakville:
• Oakville’s Largest Rock’n Roll Party celebrates its 10th year of third party fundraising, supporting threefamilies in the Halton Region living with Ehlers-Danlos Syndrome with high costs to healthcare; andthe ILC.
National Pain Awareness Week 2013–Leading up to and during November 2nd – 9th
October 28th – The ILC present A Unique Perspective of Chronic Pain to Halton Health Sciences nursing staff on chronic pain in children, adolescents and young adults.

You can find us on Facebook: or email us at or (416) 822-3494.
Please share you success stories here. Whether you are a physician, researcher, individual coping with pain, help raise hope to know that better care can and will happen. Email us at . Thank you!
Pediatric pain
Canada is a leader in pain research. So why are kids suffering?
by Elizabeth MacCallum on Wednesday, January 30, 2013
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WHAT IS THIS?

Michelle Del Guercio/Science Source
Pippa is a big girl now, almost 4, so she’s very good on the swing. “Higher! Higher!” she squealed and James McKee, her father, obliged with delight. Then it happened. The nightmare. Pippa sailed through the air like a bird and crash-landed with her right leg underneath her. To avoid hours in the notoriously slow waiting room at the Hospital for Sick Children’s emergency ward in Toronto, McGee and his wife, Amy Nugent, took Pippa to a general hospital nearby. Waiting there more than five hours for an ambulance—because children with serious broken bones in Toronto go toSick Kids—Pippa would doze off briefly, only to wake screaming. No one was around at the ER desk who could respond to McKee’s pleas for more appropriate medication for his daughter. When the family arrived at Sick Kids, Pippa was immediately made comfortable with the completely necessary pharmacological brew, as she waited until orthopaedic surgeons pinned the fracture in her femur later that day in the operating room.
Pippa was actually extremely lucky. She ended up in one of the best pediatric pain centres in the world. Canada has only seven hospitals with children’s-pain departments to serve the entire country; Manitoba, P.E.I., Newfoundland and the North have none. Despite the fact that this country is one of the world leaders in pediatric pain research, many children in Canada do not live within access of proper pain care. The groundbreaking pediatric pain management program at the renownedIWK Health Centrein Halifax flourishes, its brilliant research included. But if you live in Cape Breton and have a child with chronic pain—regular pain that continues for months and often years—every appointment can mean a long drive to the hospital, overnight stays, time off work and missed school days. These hospital-based clinics provide complete interdisciplinary care at no cost to the family. If the child sees local physio- ormassage therapistsoutside a hospital setting instead, each professional must be paid directly, unless the family has a plan through work. That usually covers only a few appointments, nothing like the costs of regular visits for the long haul. Most families are shocked to discover just how inadequate pain care for children can be.
For almost a century, as professional doctors took over from midwives and female family members in the birthing business, a myth was born that newborns and premature babies don’t feel or remember pain. In the early 1980s, the anaesthesiologist for a premature infant, Jeffrey Lawson, didn’t believe he would feel any pain during open-heart surgery. She provided nopain reliefduring surgery, just Pavulon, a drug that left him unable to move, but totally conscious. The only good news in this horror story that ended with Jeffrey’s death a few weeks later is that his mother, Jill Lawson, went on a public rampage when she learned the facts of the surgery, and went so far as to get her story published in the medical journalBirthin 1986. The anaesthesiologist “seemed sincerely puzzled as to why I was concerned,” Lawson wrote. A neonatologist explained to her that “babies, unlike adults, don’t go into shock no matter how much agony they suffer.” Lawson argued in her article that anaesthesiologists took advantage of this, coupled with the patient’s inability to complain. “I’m convinced that Jeffrey was paralyzed for the convenience of the surgeon. Once paralyzed, he couldn’t distress the operating team by demonstrating his pain, so they didn’t give it any further thought.”Her story shocked families and professionals alike and significantly vitalized the current wave of research on pain in babies and children.
The most delicate premature babiesendureup to 10 painful procedures a day, often while lying constrained in their incubators.Ruth Grunau, a professor of neonatology at the University of British Columbia, has found that the more painful procedures a child endures, the more brain-development and behaviour problems it suffers. Babies soon behave like adults who have chronic pain, and develop an infant form of depression. The problem is that regular opioids can be damaging to infants, and topical anaesthetics don’t always work.
Fortunately, not all solutions involve medication. Celeste Johnston, a nurse specializing in neonatal pain at IWK and a professor emeritus at McGill University, studies “kangaroo care,” a tactic that had mothers keep their premature babies snuggled against them, skin to skin. The strategy was first developed in the ’70s in Colombia, which had a shortage of incubators. Even with children born at as little as 32 weeks’ gestation, mortality rates fell. Johnston’s research showed that premature and term infants held skin to skin, much like a baby kangaroo in its mother’s pouch, show significantly less pain throughout tests and injections. Johnston and her colleagues are currently assessing 16 studies from around the world for theCochrane Review, the respected medical research journal, proving the benefits of kangaroo care.
Johnston doesn’t forget fathers’ contributions to pain relief, either. In an interview, she describes watching a film clip of a father never breaking eye contact with his little boy, who was in the process of being anaesthetized. He regaled his son with stories about their dog and what would happen if it were let loose in the hospital. The child went under happy and relaxed.
Dr. Christine Chambers, who holds the Canada Research Chair in pain and child health and is a professor of pediatrics and psychology at Dalhousie University in Halifax, was part of a group that generated clinical guidelines for parental behaviour when children experience mild discomfort or severe pain. Despite the instinctive tendency to empathize in rising vocal tones, her research shows that this actually makes the child feel worse. Chambers and her colleagues teach parents to distract a child, even during regular vaccinations. What affects the child’s attitude to future medical procedures isn’t so much the degree of pain a child reports feeling at the time, as it is his memory of the event. If the parents are positive and confident—without actually lying—the child will be less fearful and have less pain.
Nurse Cathy Lewis in Calgary has learned all about the power of distraction on the job. For one or two days a week, she gives vaccinations. Distressed by the unhappiness generated by this straightforward public health work, she thought back to a film about distraction techniques and clowning. Now, with her invisible magic gloves and her captivating routine, kids often don’t realize they have just had a shot—or even two. She’s proud when four-month-old babies laugh after inoculations.
At a surprisingly young age, children can help themselves, too. Celeste Johnson tells the horrifying story of a four-year-old girl who reported everything that had gone on in a procedure when she was so deeply sedated, staff thought she was unconscious. Because of this experience, the little girl hated everything about hospitals. Eventually, she came up with her own way of calming herself down. She worked out that her very own purple boots gave her magic protection. If she wore them to the hospital and kept them on always, she could be invincible. That was the end of hysterical, tearful arrivals. All it took was her imagination and understanding medical staff.
More concrete solutions will take some political will, and financial resources. In an interview, Dr. MaryLynch, president of theCanadian Pain Society, lamented the fact that only two per cent of children with chronic pain in Canada get the care they need, and argued that will never improve without a national strategy. “There is a perfect parallel in the Canadian strategy for cancer control, based on a 2006 paper that summarized a five-year plan, substantially financed by the government.”
Chronic pain costs Canada $60 billion every year, she says. Those resources can be better deployed. Last spring, Lynch, along with other experts from theCanadian Pain Coalition, blitzed Parliament Hill during the first national pain summit. Rather than emerging with a national plan, they failed to have even one conversation with a Conservative politician. “This federal government has no interest at all in national strategies,” said Lynch. “They could call a task force to put [one in]. That’s what we asked for at the summit. We have a blueprint and would be happy to help them.”
As Lynch sees it, pain is about much more than dollars. “If children don’t receive appropriate care, they miss out on formative years, and pain can wreck their entire lives. That has a major cost to the child, their family and our whole of society.” Any child can tell you: pain really hurts.
In response to the following article below here“Doctors warned to look out for parent-fabricated illness in kids” based on our experience with three families over our pilot year of providing support – “The ILC Foundation recognizes the need to protect children from the abuse at the hands of parents causing a parent-fabricated illness. However, we are also acutely aware of the tragedies inflicted to parents, whose children suffer from a difficult-to-diagnose chronic pain illness such as connective tissue disorder Ehlers Danlos Syndrome (EDS) or Reflex Sympathetic Dystrophy (RSD), who are being falsely accused of child abuse when they seek help, and then suffer the consequence of having their children removed from their care. We therefore believe that it is imperative to raise awareness of this most difficult of differential diagnoses between parent-fabricated and difficult-to-diagnose illness, and develop rigorous guidelines for best practices in first distinguishing the two conditions and then appropriately treat and care for the patients involved.”
Doctors warned to look out for parent-fabricated illness in kids - Ubelacker, The Canadian PressPublished Monday, August 26, 2013
TORONTO -- Doctors need to be alert for signs of a form of abuse in which a parent fabricates illness in a child and exposes them to unnecessary and potentially harmful tests and treatments, says the American Academy of Pediatrics.
Because it is relatively rare, caregiver-fabricated illness in a child is often unrecognized by health professionals, said Dr. Harriet MacMillan, who co-authored a report on the subject for the AAP, which appears in Monday's issue of the journal Pediatrics.
"In the child, it's a form of maltreatment; in the person who is committing it, it is considered a psychiatric disorder," said MacMillan, a pediatrician and child psychiatrist at McMaster University's Children's Hospital.
Dr. Harriet MacMillan, pediatrician and psychiatrist at McMaster University is shown in this undated handout photo. Doctors need to be alert for signs of a form of abuse in which a parent fabricates illness in a child and exposes them to unnecessary and potentially harmful tests and treatments, says the American Academy of Pediatrics. (THE CANADIAN PRESS/HO)"One example would be where a parent is reporting that the child has certain symptoms that the child doesn't have," she said from Hamilton. "The parent will say, 'My child has terrible abdominal pain.' So it begins with a set of X-rays, then other (diagnostic) procedures or potentially even exploratory surgery." MacMillan and other members of the AAP's Committee on Child Abuse and Neglect said caregiver-fabricated illness in a child has been known since the 1980s as Munchausen syndrome by proxy. The latest volume of the Diagnostic and Statistical Manual of mental disorders, the bible of psychiatric diagnoses, calls it "factitious disorder imposed on another." The syndrome name derives from Baron von Munchausen, an 18th-century German aristocrat who purportedly told many fantastic stories about himself. In the early 1950s, people who fabricated disease symptoms that led to self-harm were described as having Munchausen's syndrome. Inventingsymptoms in others came to be known as Munchausen's by proxy. "It's been referred to with different names and our committee felt it was important to refer to it as caregiver-fabricated illness in a child because it really puts the emphasis on the child, as with other types of maltreatment," MacMillan said. Caregiver-contrived illness is relatively rare -- it's estimated to occur in 0.5 to two per 100,000 children -- but its effects can be severe. An estimated six to nine per cent of children exposed to this form of abuse end up dying as a result, and about the same proportion are left with long-term disability or permanent injury. "When health-care providers are seeing children with illnesses that are not explained and result in multiple medical procedures, they need to be alert to this possibility," said MacMillan, cautioning that there is no typical presentation. A child might show up with anything from bleeding or seizures to a urinary tract infection orattention deficithyperactivity disorder, the authors say. MacMillan, who is part of a health-care team dealing with family violence and interventions aimed at preventing child abuse or neglect, said made-up symptoms can be physical or psychological. Over the years, she's seen cases of psychiatric symptoms being fabricated by a parent, "anything from 'My child is behaving in a way that makes me question autism' to 'My child keeps trying to hurt herself."' Children can end up being prescribed unnecessary drugs --antidepressants, even antipsychotics -- as a result, she said. Dr. Marc Feldman, a psychiatrist at the University of Alabama and an internationally recognized expert in Munchausen's and other forms of medical deception, said parents behind this kind of abuse are typically seeking emotional gratification, but at the cost of the child's well-being. "And usually that comes in the form of seeking attention and sympathy," he said from Tuscaloosa, Ala. "So they present themselves as the caregivers of terribly ill children, whose illnesses are defying diagnosis. And predictably, they get a lot of care and concern from immediate family as well as the community." Feldman, author of "Playing Sick," said many of these parents are dissatisfied with how their own lives have turned out and feel out of control. Successfully manipulating the beliefs of "high-status professionals like doctors allows them to feel once again in control."