Clinicians and families met at the Benson- Henry Institute to discuss mind body medicine for patients with inflammatory bowel disease (IBD).
Families, Clinicians Pursue Mind Body Medicine for Chronic Illness
Stephanie Reeves and her family are intimately familiar with the effects of stress on chronic illness. Stephanie was 12 years old when she became the target of Internet bullying at school and fell ill, losing 50 lbs in three months.
Stephanie was referred to gastroenterologist Qian Yuan, MD, PhD, at MassGeneral Hospital for Children, who spent two hours examining her and talking with her family. Dr. Yuan diagnosed Stephanie with Crohn’s disease, or chronic inflammation of the intestines, a condition her mother, Anne Reeves, believes was present but inactive until the severe stress and anxiety of the bullying caused a flare up.
“When one child is sick, or two children are sick, it affects everyone in the whole family,” Mrs. Reeves said, tearfully recounting her eldest daughter’s struggle. Reeves and her husband were checked for heart problems, which were attributed to anxiety, while their youngest daughter, then 8 years old, felt ignored.
“It changes the whole family dynamic,” Mrs. Reeves says. “Her younger sister would say, ‘You don’t love me as much as you love Stephanie’-- because every waking moment I’m looking at my child who’s fading away.”
Mind Body Connection
Five years later, Stephanie’s disease is in remission, with help from medication, a healthy lifestyle, and the support of Dr. Yuan, who continues to see Stephanie at Newton-Wellesley Hospital and at MassGeneral Hospital for Children (MGHfC) in Boston.
The Reeves family shared their emotional story in a forum this summer alongside seven other families, MGHfC clinicians and leaders of the Benson-Henry Institute for Mind Body Medicine at Massachusetts General Hospital, who gathered to discuss their experiences with inflammatory bowel disease (IBD) and the potential benefits of mind body medicine on children and adolescents with IBD.
Inflammatory bowel disease refers to Crohn’s disease and ulcerative colitis, or chronic inflammation of the colon. The severity of IBD varies, but these chronic diseases typically present in bouts of illness, and current treatment options include medication, dietary restrictions and surgery.
Relaxation techniques have in recent years been shown to benefit adults with chronic illnesses. Clinicians at MGHfC are exploring the application of these concepts to younger patients, and this summer’s event was a milestone for the initiative.
The Benson-Henry event was spearheaded by Alessio Morley-Fletcher, MD, a research fellow working with Dr. Harland Winter in pediatric gastroenterology at MGHfC. Morley-Fletcher has long had interest in mind body medicine, but a “serendipitous” encounter earlier this year with Herbert Benson, MD, director emeritus of the Benson-Henry Institute (BHI), became the basis for the larger connection between MGHfC and the BHI.
The event brought families into a candid forum with MGHfC clinicians Harland Winter, MD, Director of the Pediatric Inflammatory Bowel Disease Center; Lauren Drake, RN, an IBD specialist; and Morley-Fletcher; as well as BHI attendees Dr. Benson, Gregory Fricchione, MD, director; Laura Malloy, LICSW, director of Yoga Programs; and Marilyn Wilcher, senior director.
Gregory Fricchione, MD, director of the Benson-Henry Institute for Mind Body Medicine (left), speaks to the group, while Herbert Benson, MD, director emeritus of the BHI and Marilyn Wilcher, senior director, listen.
“Stress doesn't cause IBD but it certainly has an impact on symptoms and it is absolutely impossible to remove kids from stressful situations," said Dr. Winter, from the MGHfC IBD Center, adding, “There are no proven methods specific for children and adolescents that induce the relaxation response, so this is really the beginning of what we hope is going to be a successful program to develop techniques that are appropriate for children.”
Those in attendance hope to make mind body options available to both pediatric patients and their families, particularly at the time of their diagnosis.
“This is such an important part of the treatment for inflammatory bowel disease. Kids exhibit stress differently from adults and very often when kids go through stressful times it seems that they are more symptomatic,” said Lauren Drake.
Meditation and Laughter
As a step toward this goal, clinicians and families exchanged ideas and experiences during the half-day meeting.
“We are all human and regardless of our age we all have stress,” Dr. Benson began, going on to explain the “three-legged stool” approach to medicine promoted at the BHI. The approach comprises pharmaceuticals, surgical treatment and procedures, and self care, which includes mind body medicine.
Family participants, including Anne and Stephanie Reeves (front row, second and first from left), join in the "wave" at the recent Benson-Henry event.
“It is a very important addition and it’s scientifically proven,” Dr. Benson added. "Most recently we have shown that when you evoke the relaxation response, the opposite of the stress response, your genes expression actually changes, so these mind body exercises can change your body and this mind body separation disappears.”
Though children may not recognize their discontent as stress, Laura Malloy explained that parents can teach their children to recognize stress, and counter it with meditative breathing.
“When we are under stress, our mind always tends to go to the worst-case scenario. You start having negative thoughts about yourself, and that internal negative thinking causes even more stress, because you are adding an internal stressor to an already existing external stressor,” said Dr. Fricchione.
Participants of the event took a break from discussion to take a turn at meditation. Malloy asked the group members to close their eyes and focus on their breath or a word, while she spoke in a calming tone, asking them to let go of their thoughts.
“You can’t be stressed or anxious and breathe deeply at the same time,” Malloy explained.
People with IBD often find themselves in need of a bathroom, which becomes a stressor, particularly in unfamiliar places. One of the adolescent participants at the event shared a memory of struggling to make it through her school play without needing the bathroom. Malloy suggested deep breathing as a way of reacting to such a situation, distracting oneself from physical discomfort.
Clinicians join in the "wave" (from left to right): Harland Winter, MD; Lauren Drake, RN; Alessio Morley-Fletcher, MD; Laura Malloy, LICSW; Gregory Fricchione, MD; Herbert Benson, MD; and Marilyn Wilcher.
“There are a lot of different techniques. What is wonderful about the relaxation response is that there is something for everyone, which is a lot of fun!” Marilyn Wilcher said.
The mood in the room lightened as Malloy gave participants an introduction to laughter yoga. Parents, physicians and children alike threw their hands up for the “wave,” as seen during sporting events, and an imaginary rollercoaster ride. It wasn’t long before the group’s forced laughter turned to natural laughter.
Support and Stress Relief
Anne Reeves says her daughter Stephanie now relaxes through extracurricular activities including dance and involvement in drama at school. Stephanie, who just turned 17, is also assistant director of her high school drama society.
Stephanie found she shares an interest in drama with another teen participant of the Benson-Henry event, and Anne Reeves says the event was valuable for establishing such connections, in addition to introducing participants to mind body medicine.
Mrs. Reeves says she didn’t previously know anyone else who had gone through what their family experienced with Stephanie, but that after the event many of the families approached her to say how much they related to her story.
“I think it’s good to know that you’re not the only mother who’s completely neurotic about your child or not the only one who has another child who has been marginalized,” Reeves says.
Plans are underway for a mind body medicine research study involving pediatric IBD patients and their families. Participants will be split into two groups, one for families and one for patients; both will learn relaxation techniques while supporting other group members in their group.
“There are very promising results coming from research studies conducted in adults that show how relaxation can have a physiologic benefit to the disease in conjunction to medical and surgical therapy," Morley-Fletcher says. "Our goal with this research is not only to study IBD patients, but also to make them feel they are not left alone with the disease, by empowering them with techniques that can make them become more resilient and able to better cope with IBD and stress in general."