A mom seeking solutions for her autistic toddler with sleep apnea

Summary

Jessica shares her journey of navigating sleep, breathing, and behavior struggles with her children. She discusses the challenges she faced in getting a proper diagnosis and treatment, including medical neglect and dismissive healthcare providers. Jessica emphasizes the importance of listening to parents' self-reported experiences and the need for healthcare practitioners to consider the root causes of symptoms. She also highlights the impact of insurance limitations on accessing necessary care. Jessica encourages healthcare providers to join support groups and educate themselves on the experiences of parents dealing with sleep apnea in children. She shares her online platforms where she documents her family's alternative lifestyle and advocates for her child's care.

Keywords

sleep apnea, children, diagnosis, treatment, medical neglect, dismissive healthcare providers, self-reported experiences, root causes, insurance limitations, support groups, alternative lifestyle, advocacy

Takeaways

• Parents' self-reported experiences should be considered as important as factual data in diagnosing and treating sleep apnea in children.
• Healthcare providers should listen to parents' stories, review videos, and take subjective experiences into account when making diagnoses.
• The root causes of sleep apnea, such as skeletal deficiencies and tongue ties, should be addressed to provide effective treatment.
• Insurance limitations can hinder access to necessary care for children with sleep apnea.
• Joining support groups and educating oneself on the experiences of parents dealing with sleep apnea in children can provide valuable insights for healthcare providers.

Titles

• Overcoming Insurance Limitations in Pediatric Care
• The Importance of Listening to Parents' Experiences

Sound Bites

• "The self-reported subjective experience of parents needs to be as important as the factual data collected through testing."
• "If you see a kid whose tonsils don't look like they need to come out but the parents are reporting symptoms, that is a sign that their airway needs to be looked at."
• "Joining support groups and reading the stories of parents dealing with sleep apnea can be a humbling reality check for healthcare practitioners."

Chapters

00:00
Introduction and Guest Introduction

18:20
The Importance of Self-Reported Experiences and Root Cause Analysis

32:04
Successful Sleep Studies and the Severity of Sleep Apnea

38:40
The Need for Healthcare Providers to Listen to Parents