ImproveCareNow Pwg


It was a journey of the senses...

My name is Heidi. I’m thrilled to share a bit of our journey…

When my husband & I traveled to India to adopt our kids, 15 plus years ago, it was a journey of senses: taste, smell, touch, sound, and sight. I have learned that parenting a child with a chronic illness is also a journey of the senses. When our 19-year-old son, Stephen, was diagnosed with ulcerative colitis the summer before his junior year of high school, we had no way of knowing where that journey would take us.


Stanford's IBD Cooking Night

My name is Mary and I’m head of the Stanford Children’s Hospital Parent Working Group. In 2017 my team and I received an ImproveCareNow Patient and Parent Innovation Fund award to host a fun and interactive cooking class to teach members of our center how to cook healthy meals for people with IBD. Through this project, we hoped to build self-management skills and help strengthen our center’s sense of community.


Fierce, like a dragon!

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.


Predictions

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!


Growing Our Engagement Community – A How To Manual

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.


Helping to make a difference in the IBD community

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.


Keep in touch...

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.



A thief in the night

Our IBD journey began over five years ago with our oldest daughter. It presented itself more like a thief in the night rather than a bold, coming out. For three years prior to diagnosis, there was a sense that something was not right, but the clues left were random and independent of each other. Add in a misdiagnosis and it would take someone highly skilled to assemble the clues and uncover the mystery.



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