LOOP Blog

Hi, my name is Jen, and my 11-year-old daughter was diagnosed with Crohn’s disease in late January 2019. Thankfully, a family friend recommended Seattle Children’s and mentioned that they have been successfully using the Specific Carbohydrate Diet (SCD) as all or part of many patients’ treatment plans. Because nutrition therapy was something we were interested in, we decided to make an appointment there right away.

Remember potty training your precocious toddler?

Remember running to the bathroom to teach your child the proper way to use the potty? Now, imagine potty training your recently diagnosed IBD toddler. Who would have ever predicted that we would be dashing to the bathroom about 20 times in ONE day? This was our introduction to the world of Crohn's!

Twice-yearly ImproveCareNow Virtual Community Conferences seek to connect and grow our widely distributed and diverse community in pursuit of our purpose to improve health and care for all children and youth with Crohn’s disease and ulcerative colitis. We invite all people wishing to learn more about and get involved with ImproveCareNow to join us on May 2 between 6 and 8pm eastern for our Spring 2019 Virtual Community Conference. Read more to see the agenda for this event.

The MassGeneral Hospital for Children (MGHfC) Parent/Patient Advisory Team (PPAT) was honored to be selected for an ImproveCareNow (ICN) Patient and Parent Innovation Fund award in the fall of 2017. As a team of parents, patients and healthcare providers, this award enabled us to work together to provide valuable educational programs aimed at increasing and family knowledge of IBD, and much-needed opportunities for patients and families to network with others to share information, knowledge and know-how.

As a team, we have chronicled our collaborative, year-long journey of working together to increase the number of participants enrolled in our PPAT engagement group and formalize a model that others across the ICN Network can steal shamelessly. Our project has culminated in a “How to Manual”, which we are excited to continue sharing across the ICN Network at our upcoming Virtual Community Conference. This manual shares our lessons learned, challenges, tips, and strategies to achieve success in growing a local engagement program that will connect, support, and engage IBD patients and their families. Our hope is that the manual will serve as a catalyst to help other centers achieve similar partnerships, which will result in improved IBD care and outcomes.

Transition of care is a hot topic in our Pediatric Gastroenterology division. We have many patients with lifelong diagnoses, such as Inflammatory Bowel Disease, who will eventually need to move to adult care. In the past, transition and transfer of care have been a bit like an elephant in the room as patients near their 18^th birthday. Questions are nervously broached by parents at the end of office visits: “How much longer will you see my son/daughter? Where do we go? What if we don’t want to see an adult doctor?” These encounters made our team realize that we needed to do a better job preparing patients and their parents for transition and transfer of care. The question was, where do we start?

My name is Erin, and my daughter Caroline was only 9-years-old when she started losing weight, stopped growing and was exhausted all the time. As she grew sicker, she could not keep up with school, play with her friends, or participate in the activities she loves most: soccer and ballet. It took us almost 18 months to arrive at a diagnosis of Crohn’s disease.

ImproveCareNow Community Conferences happen twice a year. While our community works together across the miles throughout the year, these in-person conferences provide an opportunity to work on developing and spreading QI and research skills and approaches; fueling our Network's use of data to drive and evaluate QI efforts; and developing partnerships that will lead to improved care processes and outcomes in pediatric IBD.

March 29-31 we will welcome more than 200 patients, parents, clinicians, researchers, improvers, collaborators, and friends to the Spring 2019 Community Conference in Dallas, Texas and we hope you’ll join us too.

Dear Improvers,

Hi, it’s Christian – co-chair of the PAC! I’m super excited to share that the PAC has selected a design for a new t-shirt, inspired by our work with ImproveCareNow. We call it the "My ICN Home" shirt. The concept for this shirt actually came from Spring 2018 Community Conference, and I can remember flying home after the conference, visualizing a design in my head. Here we are, one year later, and I finally brought that design to life and my fellow PAC members selected it as the design for our 2019 t-shirt! 

After suffering for months (including losing 20 pounds, requiring blood transfusions, missing junior prom because I was in the hospital…) I was told I have ulcerative colitis, a disease with no cure, and that I would need medication for life. Hearing this traumatizing news, I knew my life would be changed forever. I thought I would never recover, and the sickness would continue. I did not know anyone else that had IBD, and I felt alone.

Looking back on my sickest times, I can see very clearly that the one thing I wished I had was someone else with IBD who I could talk to...someone I could relate to and who could understand what it’s like.

The Parent Working Group (PWG) has 160 participating members, and we’re always encouraging them keep in touch with each other; to share ideas, experiences and knowledge, to support one another and to communicate openly about issues and opportunities at their local centers. Last year we challenged ourselves to create a resource that would ease the flow of information and inspire these kinds of connections.