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
-
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?
-
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.
-
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.
-
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.
-
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.
Related Questions
Mother's Breathing Difficulties After Tree Dust Encounter on Cruise
My mother, a 53-year-old woman living in Australia without known health issues but with a 25-year history of heavy smoking, recently embarked on a cruise through the Pacific islands. During a guided tour on one of the islands, the tour guide struck a tree to convey traditional knowledge, which caused dust to billow into the air, and my mother inadvertently inhaled it. She described the sensation of the dust entering her throat and lungs, and shortly after, she developed severe cold-like symptoms and a cough that became so intense it made breathing difficult. Now, less than a week back from the trip, she's still battling a persistent and harsh cough. This evening, while attempting to vacuum, she mentioned having trouble breathing. Despite my concerns, her stubborn nature means she plans to wait a week before consulting a doctor—but I believe immediate action is necessary. Smoking approximately 15 cigarettes daily, she has struggled with a chronic smoker's cough for several years; however, the intensity of her current cough is unprecedented. During our phone conversation, she could not speak for more than 10 seconds without breaking into coughs. I worry that she might have contracted a respiratory infection or pneumonia. Her partner caught a milder version of her cold and has since recovered, leaving her condition looking increasingly severe. Regrettably, I cannot recall the name of the island or the specific tree involved in this incident. Given the alarming symptoms, does this seem indicative of a respiratory infection or pneumonia? For years, I have fretted over the possibilities of emphysema and lung cancer, but she is resistant to seeking medical help, fearing that it would lead to advice about quitting smoking—something she reacts to like a rebellious teenager. We are also trying to persuade her partner to urge her to visit a doctor as soon as possible.
Considering Trazodone with 2nd Degree AV Block Mobitz Type I: A Personal Inquiry
Recently, I consulted with a psychiatrist on the recommendation of my therapist. During that visit, I was prescribed sertraline, starting at 25 mg for the first week before increasing to 50 mg, alongside trazodone at a similar dosage, to help with my sleeplessness. After undergoing an EKG, which revealed a first-degree AV block, further testing with a Holter monitor indicated a second-degree AV block. Two cardiologists advised me against using trazodone, leading me to solely take sertraline, which I have been on for 12 days without any adverse effects so far. Just two days prior, I had a follow-up appointment with my psychiatrist. To my surprise, she informed me that a lower dose of trazodone, specifically 25 mg, could be an option. I've been contemplating trying it given that the AV block isn't causing me any issues – I wouldn’t have known about it had it not been for the EKG – and also because melatonin isn’t consistently effective for me. I'm reaching out for advice since I haven't come across much information online about the safety of trazodone in conjunction with this type of AV block; most findings seem to focus on trazodone overdose. Thank you for your insights! (Please excuse any language errors; English is not my native tongue.)
Seeking Relief: Ongoing Ear and Facial Discomfort After Two Weeks of Respiratory Illness
I am currently experiencing day 14 of a lingering respiratory illness, the origins of which remain unclear. It initially presented with relentless sneezing and a persistent runny nose, accompanied by a low-grade fever ranging from 99 to 100 degrees. Additionally, I have suffered from facial and sinus pain, conjunctivitis, intense headaches, fatigue, and general body aches. After visiting urgent care, I underwent tests for COVID-19, influenza types A and B, and RSV, all returning negative results. The doctor provided me with azelastine; however, he indicated that no further interventions were necessary at that time. While the sneezing and excessive nasal discharge subsided within a few days, I continue to endure headaches, congestion, generalized aches, and overwhelming fatigue at this two-week mark. Moreover, I've recently started experiencing pain in my left ear, with persistent sinus discomfort on that same side. Occasionally, I find myself running a fever of around 99 degrees. Unfortunately, I am unable to make an appointment with my primary care physician for another couple of weeks. I am contemplating whether another visit to urgent care would be worthwhile. Is there any potential relief available for my ear pain? Due to my allergy to aspirin and NSAIDs, I can only use Tylenol, which hasn't alleviated the discomfort. I suspect that I may simply need to ride out this troublesome illness, but could the symptoms indicate a bacterial infection that warrants an antibiotic treatment? Additional Information: - Age: 60 - Gender: Female - Height: 5'2" - Weight: 120 lbs - Ethnicity: White/Asian - Duration of symptoms: 14 days - Pain location: Left ear and left side of the face - Relevant medical history: MCAS, POTS, hEDS, one adrenal gland - Current medications: loratadine, famotidine, fluticasone, prescription potassium, metoprolol, montelukast, azelastine
Seeking Help for Severe Duodenal Reflux Gastritis
Hello, f30. I'm reaching out for guidance on how to effectively communicate my condition to a gastroenterologist. I’m experiencing significant duodenal reflux, resulting in bile and fluid accumulating in my stomach. After only a few bites of food, my stomach fills with liquid rather than emptying properly, leading to prolonged retention that causes irritation. Over time, my digestive function has steadily declined. I’ve lost 13 kilograms and now find it challenging to consume even a single glass of water or two meals a day. While I don't experience nausea, I'm plagued by continuous liquid retention and a persistent dull burning sensation that is worsening, accompanied by a swallowing reflex that feels like water pooling in my throat. Previous symptoms, such as sporadic but intense feelings of hunger that were alleviated by eating, as well as brief periods of gnawing discomfort, were ignored during earlier consultations. I later realized these could indicate a mild form of erosive gastritis. Regrettably, the delay in proper diagnosis and the misleading advice from alternative healthcare providers have exacerbated my situation, something that is quite difficult to accept given that I may have been treatable at that time. In contrast, I’ve observed online communities where people suffering from gastritis report more severe experiences than I initially had, leading me to unknowingly consume foods that exacerbated my condition. Many healthcare professionals attribute my issues to anxiety or stress. Although I acknowledge that worrying about my health has not contributed positively to my situation, I have not seen a direct correlation between stress and physical symptoms. Moreover, I have no history of mental health disorders. I would have been open to a diagnosis of gastritis along with a stress-related component, but the biological factors have never been thoroughly explored. I felt as though I was on a path to recovery but, lacking essential knowledge, I inadvertently consumed inappropriate foods and drinks. My primary challenge lies in articulating the severity and progressive nature of my condition without coming off as self-diagnosing or exaggerating my symptoms. I wish to convey the abnormal and uncontrollable accumulation of liquid and its damaging effects, yet I am continually dismissed because I still consume food and my digestion appears normal. I seek an assessment of whether the fluids I'm retaining are from my stomach or the pancreas. A year ago, an endoscopy indicated a healthy stomach (only a month following an injury), yet my health has deteriorated since, a point that was previously dismissed. I now recognize this decline to be linked to more severe bile reflux, triggered by my injury, which has led to a gradual loss of stomach function. I am exploring the possibility of the DeMeester duodenal switch surgery, but it’s not feasible in my country. I hope to attain the necessary diagnosis to discuss this possibility. How can I express to a doctor that my issues are no longer merely psychological? I am unable to eat or drink the necessary amount for survival, and relying solely on a once-daily meal is not sustainable. How should I approach asking for further investigation or an open dialogue regarding future treatments, including the potential for surgery, when prior referrals have been declined without a full understanding of my situation? I appreciate any advice you might have regarding my language or strategy when addressing this. A candid discussion concerning the risks and benefits of surgery in my circumstance is crucial. Additionally, has my stomach lost neural function? Are the fluids I’m experiencing pancreatic, or are they unusual protective secretions from the stomach? It is vital for me to gain a realistic perspective on my future. I realize that whenever I suspect bile, the subsequent day becomes noticeably more challenging. Can surgery potentially reverse this damage, or is that a futile hope? Those are the types of questions I want to explore with a medical professional.
Experiencing Pressure in My Teeth Again After Sinus Surgery
**Age:** 33 **Gender:** Female **Weight:** 150 lbs (Height: 5'4", Ethnicity: Caucasian) **Concern Area:** Upper right molars and nasal passages **Medical Background:** Underwent sinus surgery in August 2025 for silent sinus syndrome; no history of significant surgical procedures. **Current Medications:** 40mg of Prozac, 300mg of Wellbutrin, 10mg of Zyrtec, Aurovela contraceptive (all taken daily) **Additional Info:** Occasionally consume HHC and THC gummies, usually 125mg or 50mg if I haven’t taken them in a while. ***Rest assured, I avoided any use prior to my surgery.*** I mention this because my usage tends to cause nasal congestion. I have allergies to pet dander and live with two cats, which necessitates my daily Zyrtec intake; however, I frequently experience nasal congestion. The medication mainly helps with preventing runny nose and alleviating itchy/watery eyes. ---- Here’s some background! For a lengthy period, whenever I caught a cold or experienced significant nasal congestion, blowing my nose would result in intense pressure in my upper right molars, as if something was pushing against them. This was quite alarming. A dentist conducted a CT scan and discovered that my right maxillary sinus was completely obstructed. Consequently, I was referred to an ENT specialist who confirmed the diagnosis of silent sinus syndrome and subsequently performed the surgery. At my last follow-up, the ENT informed me that I should discontinue using the sinus rinse. However, I am currently facing similar sensations again. The same teeth are experiencing that troubling pressure right now, coinciding with a cold. Since August, despite having multiple colds, I had not felt this discomfort until now. ---- Should I reach out to the ENT once more? Is it better to wait until my upcoming dental appointment, which is in a week, to discuss it with them first? Would it be wise to purchase a new sinus rinse bottle (as they recommend replacement every three months) and start using it again? I would appreciate any advice. Thank you!