Navigating Persistent Respiratory Challenges: Key Questions for My Child's Care
My son, who is 9 months old, weighs 20 pounds and measures 27 inches, presents with a complex medical condition. He has Wolff-Parkinson-White syndrome, gastrointestinal difficulties including gastroparesis and FPIES, along with ongoing respiratory complications. After undergoing surgery to correct laryngomalacia in March, he experienced minor postoperative swelling that was treated with steroids. Currently, he is on a regimen that includes Pepcid, atenolol, and erythromycin, along with inhaled Atrovent, nebulized budesonide, and a liquid steroid for his respiratory ailments, yet we have seen no positive change. His respiratory troubles began at five weeks of age, marked by a persistent cough and snoring. This escalated to instances of self-resolving drops in oxygen levels during sleep. As he became more active, his breathing became increasingly noisy, characterized by grunt-like sounds and wheezing. Episodes of oxygen drops occurred frequently during meals and playtime, with levels falling to the high 70s for about 10 to 20 seconds before stabilizing once he either stopped moving or ceased eating. He also coughs, has a raspy voice during sleep, and snores quite loudly at night. To investigate these issues, numerous tests have been performed: - Two home pulse oximetry sleep studies revealed abnormal but self-resolving oxygen drops, which were deemed insufficient for supplemental oxygen. The first study was conducted pre-surgery when laryngomalacia was initially thought to be the culprit, and the second occurred eight weeks post-surgery with no improvement detected. - Testing for cystic fibrosis was conducted. - A triple scope was performed simultaneously with the corrective surgery, yielding unremarkable results aside from some unusual PJP cultures. - An immunology panel returned normal findings. - A swallow study indicated laryngeal penetration and rapid fatigue when consuming both liquids and solids; however, no immediate concerns were raised at that time. Collaboration among the ENT, pulmonology, and GI specialists has led them to conclude that he requires a 24 to 48 hour observation period beginning tomorrow to gain a better understanding of his condition and the lack of response to steroid treatment. I am feeling overwhelmed and seek advice on the specific questions I should pose and any additional tests I might recommend. My child has been on steroids for more than half of his life, and we have not observed tangible results. The level of concern from his healthcare team mirrors our own confusion and anxiety.
Answers (1)
6/12/2025, 6:30:45 PM
OpenHealth AI
It sounds like you are facing a complex and challenging medical situation with your son, and it's completely understandable to feel overwhelmed by it all. The interplay of his multiple conditions—especially the respiratory issues alongside his other medical challenges—can be particularly difficult to manage. Here’s how you can navigate this situation more effectively:
Main Points
- Given your son's ongoing respiratory challenges and lack of improvement with his current treatments, focusing on effective communication with his healthcare team is vital.
- Prepare specific questions and consider suggesting additional assessments to better understand his condition.
Explanation
Your son's history of respiratory issues, particularly the cough, noisy breathing, and episodes of oxygen drops during activities, combined with his medical background, warrant detailed discussions with the healthcare team. It's important to address your concerns about the prolonged use of steroids and the minimal observable benefits.
Next Steps
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Prepare Questions for Healthcare Team:
- What specific observations are the medical team looking for during the 24 to 48-hour observation?
- Are there alternative treatments or therapies to consider if there's still no improvement after observation?
- Could his inhaled medications be adjusted? Are there other inhaled therapies that might be more beneficial given his symptoms?
- Considering the lack of response to steroids, are there other approaches, such as addressing underlying causes (e.g., allergy testing)?
- Should we consider follow-up testing that hasn't yet been done, like a high-resolution CT scan of the chest or a bronchoscopy, especially to rule out other structural or functional issues in the airways?
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Document Symptoms and Triggers:
- Keep a detailed journal of your son’s respiratory symptoms, including triggers (like meals or activity), severity, and duration. This information can be very helpful for the healthcare providers in tailoring treatment.
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Explore Dietary Considerations:
- Since he has gastrointestinal issues, it may be worthwhile to consider if certain foods could be exacerbating respiratory problems. In some cases, gastrointestinal reflux can affect breathing, so discussing his diet with the team may lead to adjustments that alleviate some symptoms.
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Advocate for a Specialist Review:
- Inquire if a pediatric pulmonologist with experience in complex cases like his could provide insights or suggest new management strategies, particularly in relation to the poor response to steroids.
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Emotional Support and Resources:
- Don't hesitate to seek support—whether from family, support groups, or mental health professionals. Talking to others who have faced similar challenges can help alleviate some anxiety and provide practical tips.
It sounds like you’re doing an excellent job managing care for your son amidst these challenges. Continue advocating for his needs, ensuring all questions are addressed, and support yourself and your family through this journey. You're not alone in this, and it’s okay to ask for help when you need it.
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