About 2endibd

Mother of 1 Gutsy Kid working to support her throughout the IBD journey. Champion for her medical team at Texas Children's Hospital, a member of the ImproveCareNow network. Seeking to improve quality of life, outcomes, and remission rates for all "gutsy" kids through the work of ImproveCareNow and to advocate for the research needed 2endIBD.

Parental Guidance

Posted on 30 October 2012 by 2endibd

Having a child with IBD means many things. It means learning a new language, a new way of living, developing new family dynamics, gaining a new perspective, and seeking, desperately, to get guidance (and to give guidance). Also, it reinforces the notion, “You don’t know what you don’t know.” But, luckily at my child’s care center, and across the ImproveCareNow Network in which our care center is a participating member, guidance is available to parents and guidance is also sought from parents.

As I watch my child learn to live with Ulcerative Colitis, I learn too. So, not only does my parental guidance come from her medical team and other parents, it comes from my child as well. She guides me by letting me know I am being overprotective or questioning too much – how did you feel today? what was your level of stomach pain? how many times did you go to the bathroom? – and that sometimes it is best to just leave the UC inquisition for another day. When she is feeling good, she just wants to relish the moment and forget about UC. She guides me to live in the moment as she has learned to do and to appreciate the gift of now.

Parents as partners and teachers is important to a child’s medical team. Parental guidance is a must when communicating a child’s flare pattern as it is as unique as are our children. My daughter’s care team relies on me and my husband to guide them through her symptoms and health pattern so they can care for her better and deliver better outcomes. It cannot be “family-centered” care without the family participating as partners in a child’s care. Doctors cannot provide the best care for IBD kids without parental guidance.

As my child is a tween, my parental guidance to her during a medical visit is to model clear communications with her medical team. When my children were very young, I would always say before a doctor’s visit, “Doctors are like detectives, and we have to give them the clues to help them solve the mystery.” Teaching our children how to communicate with doctors is a necessity. With her teen years fast approaching and college around the corner (in my mind anyway), I must use my parental guidance to prepare my daughter for life-long medical care without me. I must model the behavior she needs to learn to do life with UC on her own, someday.

Even though my daughter is only a tween, her transition to being able to care for herself must begin now. While I want to be by her side through her IBD journey forever, the reality is I cannot do that. So I must not fail her by not preparing her or guiding her toward this kind of independence. We are very fortunate, our care center has a formal transition program from pediatric to adult GI care. It is just this type of guidance that I need to receive from them to do this right.

ImproveCareNow (ICN) made transitions a focus at their recent Learning Session in Chicago. Young adult patients, medical professionals and parents came together to bring their perspectives, provide their guidance for the many transitions children with IBD face and how to navigate them as smoothly as possible. Across the ICN Network, parental guidance is not only needed, it is valued. The ICN Parent Working Group (PWG) is proof of that – parents from ICN centers are coming together to guide one another and the ICN Network.

When a child is diagnosed with IBD, or any chronic disease, parental guidance is important. Why? Because family-centered care requires a circle of communication and guidance from all involved at different points on the journey. It is the needed model to resolve the issues and meet challenges of pediatric IBD. Without the many facets of “parental guidance”, our children will not live as well as they should with IBD. So not only is parental guidance important, I believe it is required.

Since 3rd Grade

Posted on 17 August 2012 by 2endibd

Remission is the goal for anyone diagnosed with IBD. The journey to achieve it, however, is long and winding. The first milestone for those with IBD is getting the diagnosis (another long and winding road; and a story all unto itself). The harsh reality of an IBD diagnosis sets in with the words, “there is no cure.” Enough said, onto mission-remission. The road to remission is marked by things like steroids, 6-MPs, biologics, surgeries, and more.

For our gutsy kid, remission finally came 18 months after diagnosis by starting Remicade infusions. Deciding to use this drug on our daughter was trying but necessary. No longer could we bear to see her so fatigued – at times she could not stand – or clinching her stomach in severe pain. Nor could we allow her to live in fear of bathroom accidents at school. We did not want her to endure another round of oral steroids or have another hospital stay. Asacol and Azithioprine only brought brief respite. What’s a parent to do?

With Ulcerative Colitis, every day she is sick is another day her colon becomes damaged; each day she is sick increases the chance of her colon needing to be removed. So Remicade it is. The agony of the decision and the stress of the first infusion led to exhaustion, for me anyway. But for our gutsy kid, she gained a new lease on life. The very next day she was energetic and happy. Out of the blue she exclaimed, “I feel so good!”. I asked her, “When was the last time you felt this good?” She paused, reflecting deeply for a moment, and responded, “Since 3rd grade.” At this time she was in 6th grade.

Our gutsy kid spent three years in pain and lost three years of her young life to suffering – mostly in silence. Even through her pain and suffering she strove to be all that she could be; competing in equestrian sports, participating in school sports, never complaining and seeking normalcy at all costs. We are proud of her bravery. We admire her tenacity. We are grateful to her medial team for giving her childhood back to her.

How many gutsy kids spend too much of their lives suffering in silence because of IBD? Too many. Thanks to the ImproveCareNow Network and the participating care centers like ours, more kids can achieve remission sooner and get back to the business of simply being kids.

The “R” word

Aside

Remission. Hearing the word always made me think of cancer and the hope that goes along with achieving remission. Having served as a volunteer and a member of the board of directors for a cancer non-profit organization for seven years, I shared many moments of joy with many cancer survivors for having achieved remission, the “R” word. During treatment it is the hope, but often not spoken of until you finally get that word from your medical team. Little did I know that the “R” word would enter my world in the way that it did – through my daughter’s IBD diagnosis in August of 2010 at the age of 9. Upon hearing that it was Ulcerative Colitis ravaging her body, consuming her childhood, and sapping her energetic persona I became a mother living for the “R” – remission.