Navigating the medical world with a child diagnosed with DiGeorge syndrome (22q11.2 deletion syndrome) can feel overwhelming. Multiple specialists, complex terminology, and evolving treatment plans make clear communication essential. As a parent or caregiver, you are your child’s most powerful advocate. Here’s how to confidently speak up, ask the right questions, and ensure your child’s needs are understood.
Advocating During Medical Appointments: Be the Voice, Not the Echo
Medical appointments can feel rushed or clinical—especially when providers aren’t familiar with the wide spectrum of needs associated with 22q11.2 Deletion Syndrome. As a parent, you may need to take the lead in explaining your child’s history, behaviors, and needs. This isn’t always easy—but it’s incredibly important.
Why Advocacy Matters
- 22q is complex and variable—no two children present the same way
- Your child may not “look” sick, leading some professionals to underestimate their needs
- Many symptoms (like anxiety, feeding fatigue, or cognitive differences) are invisible
- YOU know your child best
Strong advocacy ensures your child’s care is personalized, not generalized.
Strategies for Effective Medical Advocacy
📄 Create a One-Page Summary
Include diagnosis, current medications, allergies, therapies, communication methods, and top concerns. Hand this to new providers before you begin.
🗣️ Speak Clearly and Calmly
Start appointments with: “We’re here because…” or “My main concern today is…”
📆 Track Symptoms and Progress
Bring a journal or app notes showing patterns in behavior, energy, sleep, or mood. This gives doctors a clearer picture than in-the-moment snapshots.
📚 Know the Research, Then Translate It
It helps to learn about 22q11.2, but you don’t need to recite clinical data. Instead, focus on how the condition presents in your child’s life.
🙋 Ask Questions and Repeat Back What You Hear
Say: “Can you walk me through that again?” or “So, just to make sure I understand…”
🤝 Ask for Referrals and Coordination
If your provider seems unfamiliar with 22q, ask them to consult with a specialist or coordinate with your child’s broader care team.
“I used to leave appointments feeling dismissed or confused. Now I go in with notes, priorities, and confidence—and I ask for clarification when I need it. It’s changed everything.”
– Parent of a 9-year-old with DiGeorge Syndrome
Navigating Emotional Burnout as an Advocate
Being the “voice” for your child over and over can be exhausting. If you’re feeling advocacy fatigue, know that it’s okay to:
- Bring a friend, partner, or case manager to appointments
- Write things down instead of saying them
- Take breaks between specialists when possible
- Celebrate the appointments where things go well
- Ask your provider for a care coordinator if available
You don’t have to carry the weight of every conversation alone.
Final Thoughts for Families
Living with 22q11.2 Deletion Syndrome brings complexity—but also connection. Whether you’re making therapy appointments, managing heart conditions, or supporting your child’s IEP, your love and advocacy matter every step of the way.
And while your child’s medical journey is at the forefront, remember that siblings deserve a spotlight too. By carving out moments of individual attention and creating space for open conversations, you nurture the whole family—not just the diagnosis.
At Panassea, we’re here to support every voice in your home—from the parent advocating in clinical rooms, to the sibling asking quiet questions, to the child with 22q navigating the world in their own beautiful way.
📘 Explore More Resources
Download our free caregiver guides:
- Understanding 22q11.2 Deletion Syndrome
- Heart, Immunity, and Feeding Support
🎥 Upcoming Webinars
✔ Sibling Support for Families of Medically Complex Children
✔ Building Confidence in Medical Advocacy
✔ 22q11.2: Beyond the Diagnosis
📩 Need help preparing for an appointment or supporting your other children?
— we’re here to help you find clarity, connection, and care.
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