Day 33
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The Weilnhammer Family
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The Weilnhammer Family
On February 5th, Camila received her first biologic infusion, which is a major step forward in treating her VEO-IBD. At the same time, the team began the first step in tapering her IV steroids. For a short window, we did see some forward progress. Her belly was less distended and her gut motility briefly improved. Unfortunately, that progress didn’t last.
Camila is known to be steroid dependent, and the current thinking is that the initial steroid taper allowed her inflammation to rebound before the biologic had enough time to fully take effect. The biologic simply wasn’t able to “cover the gap” yet. As a result, her inflammation flared again, her symptoms worsened, and she began requiring significant pain management. She has since been returned to the higher steroid dose to help regain control.
One of the current challenges is timing the next biologic infusion. The hospital pharmacy absorbed the cost of the first infusion (which is extremely expensive), but they would push back on giving a second dose earlier than the standard schedule (typically two weeks after the first and often outpatient). To justify early escalation, teams must rely on very concrete data points, things like severe lab deterioration, specific imaging changes, or defined clinical markers of medical necessity. While Camila is clearly suffering symptomatically, she unfortunately isn’t showing the kind of objective deterioration that automatically triggers approval for an early second dose based on data alone.
Because of this, the rounding GI team plans to consult the IBD specialists to see whether they’ve had success advocating for other hospitalized children in similar situations, kids who need escalation not because they’re crashing, but because they’re stuck in an inflammatory limbo that can’t be safely managed otherwise.
Another complication of her ongoing inflammation is that Camila is becoming iron deficient very quickly. Her body is using up whatever reserves she has left. Because of this, she received an IV iron infusion today to support her while her gut remains too inflamed to absorb nutrients properly.
This hospitalization continues to feel like one step forward and several steps back, which has been incredibly exhausting and frustrating. We still can’t safely restart G-tube feeds until her inflammation is under better control. There’s also no clear treatment timeline or discharge planning yet, because her current condition still requires inpatient care.
Camila is full of joy, but even she has felt noticeably sad these past couple of days. Watching that has been hard. We’re incredibly grateful that we have each other right now, and deeply thankful for the support and love surrounding us as we navigate this.
Thank you for continuing to hold Camila in your hearts. We will continue to provide updates as we have them.
With love,
The Weilnhammer Family
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