Over the last two months since Camila’s scopes, there have been several important medical developments. Her biopsies from the upper endoscopy and flexible sigmoidoscopy were normal. However, without a full colonoscopy, we still can’t fully rule out Crohn’s disease. Camila’s repeat calprotectin continues to show inflammation despite ongoing IBD treatment. Our previous GI recommended a “wait and see” approach, offering a colonoscopy as the next diagnostic step and suggesting that future treatment changes would involve infusions. We also learned that her immune labs showed evidence of immune dysregulation, with her body not producing some of the functional antibodies that help protect against infections. Camila is not severely immunocompromised but she will have a harder time fighting infections. She has received her first challenge vaccine, and we should have results in about two weeks. 

Camila’s immunologist also shared that VEO-IBD is considered a genetic red flag, meaning that when IBD appears this early in life, it’s more likely tied to an underlying immune or genetic condition rather than the typical forms seen in older children or adults. Because of this, her goal is to reach a unified diagnosis for Camila, one explanation that connects her symptoms across systems instead of treating each issue as separate and unrelated. This helps ensure we’re not missing a broader immune or genetic cause behind both her GI inflammation and the rest of her medical complexities. 

A major priority for us is getting Camila’s inflammation under control and ideally into remission. IBD is extremely calorie-expensive, and when the body is constantly fighting inflammation, it diverts energy from growth, weight gain, strength, and development. Effective control of her disease is essential for supporting her long-term health. 

Emotionally, these past couple of months have been heavy. We’ve had some difficult conversations pushing back on parts of her previous GI’s interpretation of her symptoms and plan. Navigating a system that often lacks trauma-informed care for children has been draining, and the constant advocacy can feel like walking a tightrope, respecting medical expertise while also reminding providers that we’re the leading expert on Camila. We’ve also been supporting her as she develops trauma responses to medical settings, all while managing our own stress responses in real time. It has been a lot to hold, and we’re doing our best to stay grounded for her. 

We’ve now transferred Camila’s care to a pediatric IBD specialist and dedicated pediatric IBD clinic, with her first appointment next week. We’re hopeful this new team will offer more proactive monitoring, minimally invasive tools, and clearer guidance so we can fully understand what’s driving her inflammation and give her the best chance to thrive. 

As we move forward with Camila’s new IBD team, we’re holding onto hope. Sharing these updates isn’t easy, but we do it because support truly makes a difference for our family. Thank you for taking the time to read about what Camila is facing right now. 

With love, 

The Weilnhammer Family