Children and young adults who have inflammatory bowel disease (IBD) like Crohn’s disease, indeterminate colitis, or ulcerative colitis require careful and diligent medical management to minimize and prevent flare-ups of symptoms, complications, surgeries, and days spent in the hospital.
IBD is a challenging disease to have because right now there is no cure, and symptoms tend to wax and wane over time. For children especially, this can mean they look “normal” on the surface to their peers, but they may be struggling off and on with abdominal pain, vomiting, diarrhea, and fatigue that prevent them from participating in the activities they would like to pursue. As a result, IBD can be uncomfortable, discouraging, and socially isolating.
Helping end a symptomatic flare of IBD and stay in remission can be a process of trial and error, but it is important to get right so children with IBD can live normal and healthy lives. We believe there is always room for improvement, and there’s so much more we want to know about how we can help manage pediatric IBD more effectively.
Parenting – We all know that there is little real world preparation or training for the experience, even as a pediatrician, believe it or not. We therefore have to rely on others to help guide us as we raise our children.
It takes a family. We ask for advice from our moms and dads, our grandmothers and grandfathers, and our siblings with kids.
It takes a village.We get advice from friends who have their own kids, and from colleagues at our schools or in our local community.
Every morning at C.S. Mott Children’s Hospital, 40 to 50 people gather for our 15-minute safety huddle. It’s an opportunity for staff to share safety concerns that can range from equipment issues to challenging family situations with the potential to cause safety issues. It’s not the place where we solve the concerns, but it’s a place for concerns to be voiced and connections to be made so issues can be addressed. After the huddle, a quick email recap is sent out to more than 250 staff members.
Not all medications are formulated by manufacturers in dosages appropriate for children. Pharmacies make those medications by compounding them — meaning they crush and dissolve the adult medication and suspend it in liquid in a dosage appropriate for the child’s size. The problem is that different pharmacies may compound the same medication at different concentrations — meaning a teaspoon of medication from one pharmacy may not be the same as a teaspoon of the same medication from another pharmacy.
We wanted to investigate the prevalence of compounding variability and create a solution that would decrease the potential for medication adverse events occurring due to inadvertent wrong doses being administered. Data was collected that identified 147 medications that are compounded for children and found that there were 470 different concentrations of those medications being made. The concentrations of which varied widely.
The hospital world is one of many codes. For those of us who work here, we are trained to react quickly and with great precision when a code is initiated.
Just like with the many codes used in the healthcare world, the tools and procedures that child life specialists reach for when we’re called upon are truly evidence-based, and are an important part of your child’s health care.
As I child life specialist, when I hear the sound of crying toddlers who are having their vitals taken in preoperative bays, I grab the magical bubbles that are packaged in a crayon shape. Off I go down the hall, like the Pied Piper playing a flute of bubbles. Ninety percent of the time, bubbles work to quickly calm a tearful child. The other 10 percent, the Certified Child Life Specialist (CCLS) becomes any number of extraordinary characters equipped with magical toys. Okay, that may be a bit exaggerated, but that often is how my day feels as I enter the PACU and the preoperative work ups begin.
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