What questions should I ask my healthcare team?

Useful questions include: How is respiratory function (breathing) being monitored? When should we consider nocturnal ventilation (nighttime breathing support)? Is physiotherapy in place? Is scoliosis (spine curvature) being followed? Does my child need cardiac monitoring (heart check-ups)? What should I do in an emergency? Are there any research studies we could join? What educational support is available at school? If you would like help preparing for an appointment, contact us and we can help direct you.

My child has just been diagnosed. What should we do next? What can we expect in the coming years? How do I explain the diagnosis to family and friends? How do I talk to siblings? How can I connect with other families? What financial support may be available? Which organizations can help us? How can parents avoid caregiver burnout? Where can I find reliable information?

What questions should I ask my healthcare team?

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