Log of Elsie’s breathing difficulties

Overview

Diagnoses:

  • Documented as Upper Airway Resistance Syndrome (UARS) by Dr Sara Scheid, ENT, but most likely it’s acquired supraglottic collapse – intermittent and illness-triggered (history of mild laryngomalacia, now with recurrent intermittent supraglottic narrowing on expiration during viral illness)

  • Laryngopharyngeal reflux (LPR) – Dr Sara Scheid, ENT

  • Mild obstructive sleep apnea when healthy (3.1 AHI, based on sleep study results from 12/1/24) – Mt. Sinai

  • Reactive airway disorder (no asthma)

  • Mild laryngomalacia as a baby (diagnosed in July 2018; re-assessed to be resolved in August 2023)

Symptoms:

  • Either a virus or exposure to a toxin (lawn pesticides) in May 2022 caused Covid-like symptoms and sudden onset, severe nighttime breathing problems during exhalation that have recurred every time she’s gotten sick, after flights, and sometimes when she doesn’t get sick but her body is fighting something off.

    • Mechanical/structural weakness resulting in airway constriction. This occurs in nREM, after about 90 minutes of sleep and lasts 3-6 hours and includes:

      • Labored breathing only on exhales (sounds a bit like Rhonchi)

      • Hypopneas (breathing stops for ~10+ seconds, then she chokes)

      • Dips in ox levels (medical monitor showed it bounced between mid-80s and 90s)

    • Reactive airway, which often results in barking/honking coughs, when sick

    • Frequent viruses – for the past year she’s been sick once a month for 6-10 days each, during which time she misses school and has nighttime breathing challenges for 3-5 nights

Trajectory of what we’ve been told since these problems started:

  • “I have no idea what’s causing the breathing issues” – Urgent care, when collapse suddenly occurred in May 2022

  • “Her adenoids and tonsils are small and laryngomalacia is gone, so I won’t order a sleep study. Send me videos…ok, I think she’s just snoring.” – Dr Alison Maresh, ENT, Weill-Cornell, August 2023

  • “It sounds to me like tracheal inflammation, maybe try Flonase? Also get her tested for allergies. ” – Dr. Rawal, pediatrician, Sept 2023

  • “She’s coughing a lot, so let’s put her on nebulized Budensonide for this virus” – Dr ?, pediatrician, July 2024

  • “We won’t know if it’s tracheomalacia without a sedated bronchoscopy, and I would only order a CPAP in cases of respiratory failure. Give her Atrovent and see if that helps, and let’s keep her on ICSs (Budesonide or Fluticasone) twice daily. I’ll order a sleep study, but until then use this ox monitor next time she gets the breathing issues. The throat clearing might just be a tic, but it’s hard to know. You should try another ENT.” – Dr. Grant, pulmonoligist, Mt. Sinai, September 2024

  • <When ICSs caused increased LPR symptoms and bronchospasms resulting in rounds of bronchiolitis, and did nothing to improve nighttime breathing> “Maybe double the dose of the steroids.” - Dr Grant, November 2024

  • “Yeah I would take her off the steroids and maybe find a new pulmonologist.” – Pediatrician on staff during sick visit <I took her off steroids, and she improved>

  • “Adenoids and tonsils are small. I think the throat-clearing is just a tic. Stay on the meds and let me know what the sleep study says.” - Dr. Scott Rickert, ENT, NYU-Langone, November 2024 <Never responded to follow-up inquiries>

  • “Oxygen dips to 86 at night are not normal, even when sick, and I am concerned. I will write to the pulmonologist, and you should also get Elsie tested for allergies.” - Dr Rawal, pediatrician

  • “This kid is definitely gonna need palatal expansion, and it’ll probably help her airway too.” – Dr Kamenitz, Dentist, Feb 2025

  • “I don’t think she has tracheomalacia, based on the fact her symptoms aren’t constant and the sound of her cough. Her apnea is negligible. She’s too young to handle a CPAP. We don’t need to test her for anything. She obviously has something going on with the upper airway, but I don’t know what. But she’ll probably grow out of it. Next time she can’t breathe at night? Have a glass of wine, she’s not dying.” - Dr Phinizy, Pulmonologist, CHOP Airway Clinic, Feb 2025

  • “I mean, it’s possible she has some reflux but probably nothing major. I don’t need to do any testing.” - Dr Crawford, pediatric GI, CHOP Airway Clinic, Feb 2025

  • “I don’t think palatal expansion will help. But sounds like she doesn’t have tracheomalacia, so you don’t need me.” - Dr Sobol, ENT, CHOP Airway Clinic, Feb 2025

  • “Her apnea is very mild at 3.1 AHI. I agree she probably doesn’t have tracheomalacia, but even if she did, we wouldn’t do anything different besides give Atrovent. She couldn’t handle the respiratory test today so we’ll try in 6 months. Palatal expansion should help, though.” - Dr Vicencio, pulmonologist, Mt. Sinai, Feb 2025

  • “This kid has a normal palate and some crowding but in my mind is not a candidate for expansion.” – Dr Mosery, Orthodontist, Spring 2025

  • “Her CBCT is a little blurry but yes, I think the airway is more narrow than average. I think expansion should help. We use Nuvola, a slow expander. She can start in September. You should find a myofunctional therapist in the meantime.” – Dr Atanese, Airway Dentist, Spring 2025

  • “She has a normal-looking palate, but we’ll work on oral strengthening before tongue position. Expansion will probably help her airway.” - Esther, Myofunctional Therapist (MFT), Spring 2025

  • “She has LPR and UARS, as well as mild apnea, and the silent reflux is exacerbating her airway inflammation. Let’s put her on Pepcid for a period of time to reduce that. CPAP is an option we can talk about in future, but a little hard since this is an intermittent issue and she might need different pressure at different times. Continue myo therapy, and expansion should help her airway. And get her tested for allegies.” - Dr Scheid, ENT & Sleep Specialist, Summit Health, June 2025

  • “Well, the test looks good; she has no environmental allergies.” – Dr Hutchinson, Allergist, Summit Health, August 2025

  • “Yes, DISE might be a good idea and would also help the airway dentist with her treatment plan.” - Dr Scheid, ENT & Sleep Specialist, August 2025

  • “I don’t know who’s telling you she doesn’t need palatal expansion; my fingers are in her mouth and I can tell you this is a high palate. She needs expansion. Her tongue ties are probably also an issue.” – Janyne Vasel, Craniofascial Therapist, August 2025

  • “Yes, she has 3 frenulum tongue ties, but if it hasn’t been interfering with function, we should just concentrate on oral exercises for now.” – Esther, MFT

  • “I mean, she needs expansion. She has a narrow palate and a very narrow midface – look at the distance between these lateral incisors – there is no room for more teeth to grow in properly. If you’ve already committed to Nuvola, go for it – but if that doesn’t work, you’ll still have time to try something else afterward.” – Dr Kamenitz, Dentist, Feb 2025

Summary: Elsie is a healthy kid with no environmental allergies, no asthma, normal tonsils and small adenoids.. Either exposure to a toxin (lawn pesticide) or a Covid-like virus triggered airway collapse to some degree, which was exacerbated by underlying apnea and inflammation from LPR and airway reactivity when fighting off a virus. Worse when supine, sometimes slightly better if prone. When healthy, she generally sleeps peacefully/quietly, with only occasional snorting.

We also speculate that introduction of an ICS in July 2024 (inhaled Fluticasone, then Budesonide) perhaps worsened or exacerbated her airway narrowing, causing her to (undetected) LPR to worsen, with constant throat clearing/coughing whenever eating or drinking. She also developed a bad barking cough with every subsequent virus. This improved when we took her off ICS in November. 2024 However, expiratory labored breathing during sleep has remained the same, despite meds. In June 2025 she was correctly diagnosed with UARS + LPR and put on 12 weeks of Pepcid, which has helped to some degree.

Care team:

Current:

  • Dr Sara Scheid, ENT & Sleep Specialist @ Summit Health (Florham Park, NJ)

  • Drs. Grunde & Rawal, pediatricians @ Tribeca Pediatrics (Hoboken, NJ)

  • Dr Corinne Atanese, Airway Dentist (Chatham, NJ)

  • Dr Scott Kamenitz, Pediatric Dentist @ True Dental (Jersey City, NJ)

  • Dr. Vicencio, pediatric pulmonologist @ Mt. Sinai (NYC)

Previous:

  • Evaluated by Dr. Phinizy & team at CHOP’s Airway Center (2/21/25)

  • Dr. Scott Rickert, pediatric ENT (NYU Langone Aerodigestive Center)

  • Dr. Allison Maresh, pediatric ENT (Weill-Cornell)

  • Orthos: one at Heights Orthodontics, and Dr Mosery at Mosery Orthodontics

Current medications: When sick: Ipratropium Bromide (as nebulized Atrovent), as well as inhaled sodium chloride (.9%), nasal Xclear, as well as Motrin before bed. She always sleeps with a humidifier.

History: When healthy and not after flying, Elsie typically shows no signs or respiratory distress or apnea when sleeping, and only occasionally has had mild snoring/snorting. Her growth rate is high and weight is healthy. Her adenoids are small, and tonsils have always been normal (confirmed by ENT endoscopy in August 2023), so no sleep study was ordered until recently. Laryngomalacia – diagnosed at infancy via endoscopy after a single, non-recurring apnea event – was assessed to be resolved. A pulmonologist in spring 2023 and another in summer 2024 did not feel Elsie was asthmatic. One minute of nebulized Albuterol, administered after a URI in spring 2023, caused her serious shortness of breath, racing heart, and feeling sick.

From September 2023 til April 2024, nasal Fluticasone (Flonase) advised by her pediatrician was very effective at reducing or preventing these breathing problems when sick at night, or when about to be sick – and she was only sick a handful of times. But then Flonase suddenly stopped helping. A pediatrician prescribed Budesonide, and 6 weeks later Dr. Grant prescribed daily Fluticasone and Atrovent (Ipratropium bromide) in nebulizer when sick. Bronchoscopy was discussed, but held off since symptoms were not constant or seemingly severe and the doctor wanted to first complete a sleep study. After this time, Elsie began clearing her throat or light coughing whenever she’d drink, take dramatic inhales when eating, and have a brassy cough when belly laughing. At a sick visit in November 2024, a pediatrician in the practice mentioned that further use of ICS could jeopardize tracheal cartilage, which validated my own research. She advised visiting the ER for oxygen when Elsie’s levels drop low at night during sicknesses, and suggested consulting with another pulmonologist the possibility of an oral/systemic steroid or CPAP in periods of sickness rather than a daily ICS.

We had been on a waitlist for CHOP’s Airway clinic, and she was seen by Dr. Phinizy and colleagues in February 2025. He did not feel the video footage of her nighttime breathing difficulties indicated tracheomalacia, feeling that her cough was “brassy” rather than “barking” and symptoms should be worse and ever-present with that condition. He speculated symptoms were due to OSA, exacerbated by illness, but that a CPAP would be “traumatizing” and overkill. He advised that I “have a glass of wine” the next time my kid was unable to breathe at night. This was, obviously, frustrating.

Upcoming assessments:

  • TBD – Considering DISE with Dr. Scheid

  • March 18 – Consultation with Dr. Alfin Vicencio (Mt. Sinai)

  • April 11 – Allergy testing, including environmental and antibiotics (Mt. Sinai)

X-rays & Medical Reports

February 2025: Notes from eval by Dr. Phinizy at CHOP Airway Clinic (full PDF)

December 2024: Results of in-hospital sleep study (PDF) from 12/1/24 (diagnosis: mild obstructive sleep apnea)

Septmber 2024: Chest x-rays (image 1 and image 2) during bronchiolitis with urgent care report

October 2024: Chest x-ray (images in PDF) during another 11-day barking cough

August 2023: Nasal endoscopy (normal tonsils/adenoids) – visit notes – scroll down for embedded scope video

Timeline of symptoms

    • January 18-20: Fever and cold symptoms, but no nighttime breathing issues. Recovered within two days.

    • January 27-31: Flu A, fever for 4 days with congestion and some coughing. Minor issues sleeping but not bad like it could be. Atrovent/Motrin at night.

    • February 12-20: Suspected RSV (unconfirmed but friends she was exposed to got it at same time) – fever, lots of congestion, some coughing, very bad breathing issues at on nights 2 and 4 but extremely bad on night 3. I gave a double dose of nebulized Atrovent (5 ml total) to get her through the third night. Nights 5 and 6 were calm, quiet sleep, however night 7 (when all symptoms seemed to be gone during the day) was noisy exhales and apnea again, all night – likely due to a TON of running/jumping she had done in the hour leading up to sleep. Following night was still apnea but no noisy exhales.

    • March 1-2: Mild cold; breathing issues at night from 2/28, congestion and elevated temp during the day. Only lasted a few days.

    • March 9: Indications that breathing difficulties were beginning overnight – some apnea and intermittent labored exhales, but she was able to reposition herself. Used Atrovent on subsequent nights and it did not recur.

    • March 15: After a day at an indoor playground, she began having labored breathing at 1a. Gave Motrin, Flonase, but it was still a struggle to sleep except on her stomach. Elevated temp in the morning.

  • Sept 2023-May 2024: Elsie was only mildly sick a few times the entire school year, and Flonase did help her sleep or even seemed to prevent colds from getting worse – til May, when it became less effective.

    July 2024: Out of nowhere, with no symptoms of any kind, she started having stridor and other noises after about two hours of sleep. Progressed to a 10-day cold treated with Budesonide (prescribed on day 4 by pediatrician). After this cold, Elsie began clearing her throat often, especially whenever eating or drinking, and taking deep breaths or gasps between bites.

    August 2024: Saw Dr. Grant (pulmonologist) at Mt. Sinai for an eval. She advised to try Atrovent in nebulizer at night the next time she gets sick. Informed her about the new throat-clearing and she said it could be a tic/habit or something else, would need more diagnostic data.

    September 2024:

    9/9 – URI. A low fever and mild cold symptoms developed into bronchiolitis for two weeks, though her energy was great. On night 2, a medical-grade oxygen monitor used when she woke up in the night showed her ox levels bouncing between 85 and high 90s. Monitor was not used afterward due to low sleeping heart rate constantly setting off alarm. Visited pediatrician, consulted pulmonologist. X-rays were taken at urgent care after ten days, showing bronchiolitis and reactive airway disease. Symptoms lasted 14 days.

    9/26 – Developed a minor runny nose with some labored breathing during sleep; meds were used; lasted two days.

    October 2024:

    10/4 – Seen by Dr. Scott Rickert (pediatric ENT @ NYU Langone). He was briefed on the care plan and agreed that conservative treatment was best until results of sleep study were in and we could determine whether diagnostic procedures were warranted, to rule out causes of airway obstruction. Dismissed the throat clearing during eating/drinking as a tic/habit. Further emails and calls to this doctor went unanswered, however.

    10/5 – URI. New virus inducing a barking cough and elevated temp (btw 99-101.7 daily). Interestingly, I did not notice the typical breathing issues during sleep which normally indicate the start of a virus, though she did have nighttime strider several days into the virus. Bad coughing lasted 11 days, all meds were used. Urgent care took an x-ray and only found reactive airway disease, lungs clear. Suspected bronchospasms and advised us to stick with nebulized meds aggressively whenever sick.

    10/23 – Saw Dr. Grant for follow up. She said it’s ok to proceed on Budesonide but to track symptoms and progress and switch to a double dose of Flovent as necessary. Did FeNO airway test for inflammation with a normal result – but Elsie had nebulized Budesonide an hour prior. Lungs sounded great. I raised concerns about Elsie’s coughing/gasping when eating and drinking but she said it was to be expected with tracheomalacia because the airway gets compressed when swallowing.

    10/24 – Cold for 6 days with slightly elevated temp, but with only mild/moderate breathing issues at night. All meds in nebulizer used, plus Motrin. Did not escalate beyond an occasional barking cough.

    November 2024:

    11/7 – virus for 10 days. Started coughing on 11/7 with chest congestion. Began using AirPhysio (PEP device) before bed, which might have made collapse worse, and all meds. Several tough nights with trouble exhaling, gurgling and choking sounds as well as wheezing/gasping in the morning of day 2 with loud, barking coughing fits during the day where she would almost throw up trying unsuccessfully to clear mucous. Nasal congestion set in on day 2 and lasted a week. Saw provider at our pediatric practice who confirmed our suspicion that ICS use is not recommended in those with tracheomalacia and can make it worse. She advised finding a new pulmonologist, getting Elsie off of Budesonide, and discussing the use of an oral steroid, or other treatment options.

    11/11 – Reached out to CHOP after extensive research to identify specialists who understand tracheomalacia. Awaiting decision on assessent/eval.

    11/17 – learned about small but successful trials of Bethanechol for tracheomalacia; reaching out to Dr. Maria Santiago in Long Island to get on waitlist, as she pioneered the study alongside CHOP.

    11/25ish – totally weaned off Budesonide, and began new supplements (Butyrate, mixed with her existing Seed probiotic, a fish oil gummy (DHA/EPA), and multivitamin Smarty Pants gummies) as well as doing sodium chloride in nebulizer morning and night, with Atrovent occasionally (like once or twice a week at night). The Butyrate within weeks started improving her poops to the point that FINALLY after six years we were able to stop giving her half a teaspoon of Miralax daily; my suspicion is that it helped her digest and use the probiotic. This also launched a 2-month period of health.

    12/24 – Absent any other symptoms, she began having breathing difficulty at night. Because there was slight indication of this the night prior, I had given her Atrovent before bed (alongside sodium chloride and Xclear, which we’ve continued twice daily), but the issue got worse about 3 hours into sleep. I repositioned her and eventually she was able to get back to sleep. No symptoms the next day. Fitbit was unable to capture ox levels.

    12/25 – Atrovent + sodium chloride + Xclear + Flonase + Motrin before bed (8:45). Finally went to sleep around 11 and by 1a she was having very labored exhales. Woke her up and gave her Atrovent inhaler, but an hour later she was having problems again so I gave her more Motrin. About an hour after that (3a) she could more or less sleep on her side or stomach. Occasional coughing while eating the next day, but no other symptoms and great energy. Fitbit still wouldn’t capture ox.

    12/26 – No symptoms. Motrin, Atrovent, Sodium Chloride, Xclear, Flonase before bed. Woke a few times with labored breathing but was able to reposition and get back to sleep. Ox average of 95. On 12/27 night, same thing, with ox averge of 97.

  • May 2022-Sept 2023: Constant colds/viruses, averaging every few weeks, the entire year after starting school. The breathing difficulties during sleep returned every time – slightly before symptoms appeared, then throughout the first 2-3 days of the cold. I would give her Claritin and Motrin and shake her back when she'd stop breathing.

    Feb 2023: Double ear infection, resulting in 104-106 temps for 5+ days; went to two ERs and due to antibiotic allergies, she was treated with two shots of Rocephin over three nights, and it resolved. (She did not experience the breathing difficulties during sleep.)

    Spring 2023: Evaluated by a pulmonologist for a lingering URI; he thought she had no signs of asthma, but prescribed Albuterol to address a chesty cough – but not, at this point, a barking cough. Elsie had a bad reaction to that, with extreme shortness of breath, high heart rate, and feeling ill after just five minutes on the nebulizer, which we later learned is a known reaction for tracheomalacia. We stopped that treatment and she recovered from the URI on her own – but the nighttime breathing issues continued whenever she'd have a cold or virus. The pulmonologist wasn't sure what was causing it.

    July 2023: We flew to Europe and on arriving, the nighttime breathing trouble started with no signs of illness, lasting 5 nights. I gave Motrin, but it didn't help much. She breathed normally during the day.

    August 2023: Evaluated by Dr. Maresh (pediatric ENT) while healthy. Endoscopy revealed tonsils and adenoids were normal (adenoids were in fact smaller than most kids), no signs of laryngomalacia. She requested video footage of Elsie sleeping, but on seeing it, thought it was just normal snoring or perhaps mucous buildup and we should "wake her up and have her blow her nose" – however the issue would occur even before symptoms, with no signs of congestion. The doctor would not order a sleep study without seeing "evidence" of a problem.

    September 2023: Her pediatrician (Dr. Agarwal) listened to the recordings and suggested the issue might be tracheal inflammation. Suggested Flonase, which definitely helped mitigate the issue for most of the school year.

  • July 2018: At 10 weeks old, she underwent an EKG + endoscopy at Weill Cornell ER due to a sleep apnea event and stridor; heart was fine, minus sinus bradycardia, and she was diagnosed with mild laryngomalacia and required to sleep on an incline and wear a foot oxygen monitor, which she did for two years. Did not experience apnea again.

    Feb 2020 + Dec 2021: Covid infections – only manifested as a fever for half a day, and she got over it very quickly. Normal colds and the flu happened throughout toddler years, and congestion would of course cause her to have difficulty sleeping, but nothing like breath cessation, choking, stridor or labored breathing.

    May 2022: We were visiting friends while they had their large lawn treated for ticks with “organic” pesticides. After treatment, we were outside for an hour or so and all of us woke up the next day with a light, dry cough. At first we assumed this was an obvious reaction to the toxins, but after several days it seemed to mimic Covid infection with fever (tests were negative but doctors thought perhaps it was a new variant). On day 5 of a dry cough, Elsie began experiencing these breathing issues related to airway collapse – very labored exhalations, unable to exhale without a cessation of breath, then choking/coughing. Visited urgent care on day 6 with fever present and an earache that self-resovled. They weren't sure about the breathing issue, and neither were her pediatricians.

Video documentation (while sleeping)

November 2024 ↓

This is her during a recent virus, dosed on Atrovent and Motrin (a few hours prior to video) Budesonide (nebulized, before bed) as well as inhaled saline, nasal Xclear, and nasal Flonase. Also a clip from the following morning – she was having hacking coughing fits throughout the day, but could not bring up mucous.

July 2024 ↓

September 2023 (with historical footage as infant) ↓

August 2023 nasal endoscopy ↓

Known allergies

Supplements:

  • Magnesium (I think Glycinate)  – constant vomiting for 15 hours (Nov 2021)

Antibiotics:

  • Amoxicillin/Clav – full-body hives after 8 days (Feb 2023, for double ear infection)

  • Cefuroxime – vomiting for 12 hours (March 2023, for mild ear infection)

Respiratory:

  • Albuterol – immediate gasping for air for an hour, after 5 minutes on nebulizer (June 2023 – was used to treat a residual cough after upper respiratory infection); heart racing, and complained of feeling sick; at this point we did not realize she likely had tracheomalacia

  • Inhaled Budesonide / Fluticasone – concern that it caused further tracheal narrowing; after 9+ weeks, her symptoms increased and illnesses gotten more frequent. After discontinuing ICS, symptoms improved.

SAFE MEDS – NO REACTION TO:

Motrin, Tylenol, Claritin, Nasal Fluticasone, Rocephin (shots), Atrovent (nebulized ipratroprium bromide).