Our Journey With Sickness-Induced Asthma
If you’ve ever been up in the middle of the night, holding your child upright while they struggle to breathe, knowing another ER visit is looming because of sickness-induced asthma, mama, I see you.
This article is for the mama who’s exhausted, scared, and desperately searching for answers about why her kiddo keeps getting sick.
I’ve lived that story for the last seven years, and I’m here to walk you through the long, winding path that led us to the right diagnoses, the right doctors, and a treatment plan that’s finally making a difference. Spoiler alert: it wasn’t just asthma.
Let me share our story, our team of providers, and the tips I’ve learned to manage sickness-induced asthma in children, because I know firsthand how overwhelming and lonely this journey can be.
The First Clues – When “Just a Cold” Isn’t Just a Cold
My son started showing signs that something was wrong as early as 6 weeks old. He snored loudly, struggled to breathe while lying flat, and had persistent nasal congestion. Our pediatrician prescribed a steroid—eye drops, of all things—to be used in his nose to help open his nasal passages.
At 9 weeks old, he had his first bout of croup and received his first breathing treatment. That was when we knew we weren’t just dealing with a baby who caught colds easily, we were dealing with something more serious. The odd thing was, I kept my daughter who was two at the time, home my entire maternity leave. So, it wasn’t like we were getting “daycare” sickness. This was just your regular old grocery store, environment impact that he was getting so sick from.
At 7 months, he underwent a lip and tongue tie release, hoping it would help with the gagging, choking, and feeding difficulties we were facing. Then, at 11 months, he had his adenoids removed and ear tubes placed to combat persistent infections and breathing trouble.
But the problems didn’t go away. We realized that we were definitely dealing with sickness-induced asthma. And, that they really officially couldn’t say that until age five. But that is what it was. In the meantime, they called it “reactive airway disease”, or RAD, until we could offiically test.
He had a second set of tubes placed at age 3, followed by a terrifying four-day stay in the ICU at 3.5 years old. We arrived by ambulance after another breathing emergency, and it was then that he had his first bronchoscopy—a procedure that finally made doctors start taking us seriously.
At age 4, we got in with a pulmonologist. But by then, he’d already been through an exhausting carousel of ER visits, urgent care centers, and prescriptions from pediatricians for nebulizers and steroid inhalers.
Does this sound familiar? I’ve lived it mama. Keep reading.
Step One – Working With the Pediatrician
Our pediatrician was compassionate but limited. Early treatments for our sickness-induced asthma and chronic croup included albuterol, Flonase, Singulair, and trial-and-error courses of antihistamines. We were on monteklusat for a while, but my kiddos attitude and behavior completely changed (and not for the good). After doing my own research and reading about the side effects, I IMMEDIATELY pulled him off. I felt like I was in a bad infomercial for medications. And, the cycle continued, our kiddo would get a cold, spiral into breathing distress, and end up needing emergency steroids or a trip to the hospital. These meds were not doing us good, and even doing more harm.
I kept asking: Why does every minor virus turn into a full-blown respiratory crisis?
The pediatrician’s answer was usually “let’s watch and wait” or “maybe it’s just viral.” But my mama gut knew better. So we pushed for referrals and started building our medical team.
ENT: Our First Real Intervention
Our ENT was the first specialist who really stepped in. He performed the adenoidectomy and placed ear tubes—twice. He also ordered a bronchoscopy, which revealed inflammation but didn’t give us a root cause.
For a short time, we thought we’d solved the puzzle. Breathing improved slightly, sleep seemed better—but it didn’t last. He kept getting sick. He kept wheezing. The sickness-induced asthma visits to the ER visits continued. We finally requested a referral for a sleep study, and decided we needed additional care teams involved in our path towards discovery and hopefully, diagnosis and healing.
Pulmonology & The Asthma Diagnosis
The pulmonologist gave us our first formal diagnosis of sickness-induced asthma with recurrent croup when we were aged five, so it could be documented.
Finally, someone gave it a name on paper.
We were finally given a detailed asthma action plan, daily steroid inhalers, and emergency protocols. It helped, but only partially. Despite being diligent about every puff, every med, and every environmental trigger, our kiddo kept ending up in the hospital.
It became clear: the inhalers were treating the symptoms, but not the cause. Why was no one looking at preventative medicine?!
The Allergy and Immunology Chapter
At age 6, we were referred to Allergy and Immunology, again. We’d done allergy panels before, but this time, they ran full immune workups for the first time. Could it be that there was a reason we kept getting sick and it escalated to the ER?! I kept saying this cannot be normal. Our older daughter gets sick all of the time and doesn’t end up in the emergency room. Something has to be WRONG!
That’s when everything changed. We found a provider that was out of our normal network, that specialized in children’s allergy testing and had a deep understanding of issues like we were experiencing. She was the only person who could diagnose the true allergy issues with our son.
We were diagnosed with Specific Antibody Deficiency (SAD)—his immune system wasn’t holding onto the titers from his vaccines, especially Pneumococcal 23. He was getting the same illnesses again and again because his body couldn’t remember how to fight them. They determined this by his blood work. Even though he had gotten the pediatric vaccinations, his blood work was showing he didn’t have any titers to these illnesses. After repeated vaccinations, they tested him again. Only to find of the 23 titers, he only had seven. They repeated the bloodwork again a year later, and he was back down to one.
When I handed his doctor our 100+ page document—a detailed log of every symptom, every ER visit (we’re up to 50-60 now), every med and reaction—they took one look and said, “You’ve done our job for us.”
We’re now over 125 pages into this tracking system, and it’s been crucial for navigating the complex insurance process. We’ve been waiting six months for approval for antibody infusions, the next step in our treatment plan.
Airway Orthodontics and Sleep Specialists
Around the same time, we visited a sleep specialist, who initially referred us back to the ENT. This was a really frustrating experience, as it was clear that this was a canned response and they had not looked at our chart and our personal story to understand that we regularly see an ENT (and had just been there two months prior to the sleep study).
Instead of heading back to the ENT another time, we decided to head to an airway orthodontist. My daughter had been treated with an expander since Kindergarten and was in year three of her treatment and we had seen drastic improvement from her sleep and huge structural changes to her face and mouth that were really helping her. I decided that I was going to trust my gut, and follow this path.
And, turns out this was exactly the right move. This visit was where the structural issues came into focus.
After doing a full 360 degree xray of my son’s head and face, and taking multiple images of him in different positions, it was discovered that his nasal passages and throat anatomy were working against him. Chronic inflammation, narrow airway structures, and poor nasal breathing created a perfect storm for swelling and obstruction. They said that he had a 40% blockage in his throat airway and that one of his nasal passages was almost completely closed. No wonder he was consistently ending in the ER when he got a cold. There was very little room to account for any type of swelling without him losing the ability to breath.
He was fitted with expanders about three months ago, and while we’re still in the early stages, we’re hopeful. The middle-of-the-night wakeups are less intense. The breathing is just a little bit easier. Progress.
While this was super validating to have answers finally – definitely confirming an anatomy and airway issue plus an immunity issue, it was frustrating and maddening that it took seven years of pushing to get here. I don’t want any other parent to have to go through this like I have.
Putting It All Together – A Holistic Support Team
Here’s the truth, mama: no single doctor had the answer. And, it was my work as an advocate for my child, along with my meticulous documentation of each symptom, illness, date, and time, that got us to the proverbial finish line. I keep a running notes document on my phone that I just add to each time we take a med, get sick, or have a situation that is outside of our normal maintenance plan. This has saved me, as there are so many times that we are treating at home and do not go into the doctor that would not have had documentation for and not shown the true picture of his health. I am his biggest ally, and you will be for your kiddo too.
Our path required a team approach:
- Pediatrician: for early management and referrals
- ENT: for adenoid and ear tube surgeries, bronchoscopy, sleep study referrals and more
- Pulmonologist: for asthma diagnosis and maintenance plans
- Allergist/Immunologist: for blood work, allergy testing, SAD diagnosis and long-term immune care
- Sleep Specialist: to evaluate sleep-related airway obstruction
- Airway Orthodontist: to physically expand his airways
Each one brought a piece of the puzzle. And no one was looking at the big picture of my kiddo except me.
Managing Sickness-Induced Asthma at Home
Here’s our daily management plan, built from years of trial and error. Remember, I am not a medical doctor and am not suggesting that you follow this same plan. You will need to contact your doctor and work closely with your specialists to develop what is right for you. I am merely sharing this so you get an idea of what we are doing and how we are managing at home.
- Daily antihistamine (we now use Claritin kids chewable tablet 2x daily). Since both of my kiddos take this daily, we have found the best deals at Costco.
- Nasal spray (steroid-based) and/or saline based when sick
- Steroid inhalers (morning and night) – We use symbicort as our daily maintenance inhaler
- Probiotic + Vitamin D + Zinc + Multivitamin – We rely on Shaklee for clean ingredients and the best support for our kiddos
- HEPA filter in bedroom – We use this one
- Emergency nebulizer on hand- We use this one
I keep a bag prepped at all times with emergency meds and his asthma plan, along with overnight clothes in case we need to jet to the ER.
Still, we have setbacks. We’ve needed oral steroids more times than I can count, and they only give those at the ER. So the late-night drives continue, though less often than before we are still on our journey as we await approval from the insurance company on our antibody infusion treatments, and as his airway continues to be expanded.
The Emotional Toll on You and Your Kiddo
Let’s talk about the part no one prepares you for:
- The trauma of being dismissed.
- The exhaustion of middle-of-the-night panics.
- The way your heart breaks when your kiddo says, “Mama, I can’t breathe.”
It’s a lonely, terrifying, and frustrating path. When my kiddo is getting sick, I cannot sleep. I lie awake listening, waiting to hear the tell-tale sign of the barking seal cough and get ready to head to the ER. But, it’s also one where your love and your instincts are your greatest tools.
You are not “just a mom.” You are a researcher, an advocate, a record keeper, a fighter.
And if you’re doing all this without answers yet, please know: You’re not doing anything wrong. The system just wasn’t built for families like ours.
Final Diagnosis and Hope for the Future
Today, our son is 7 years old.
- He has a diagnosis.
- He’s in an orthodontic treatment plan to expand his airways.
- We’re awaiting insurance approval for antibody infusions.
- And most importantly: we have hope.
We still go to the ER. We still document every detail. And, we have a younger son who is walking a similar journey too. But we are finally starting to see the path forward. And, we have a much better plan for our younger child now that we have navigated with our older one. We are a resource for ourselves, and we want to be that for you too.
You’re Not Alone, Mama
If this sounds like your story—even just parts of it—please hear me:
- Keep advocating.
- Build your support team.
- Document everything.
- Trust your gut.
And above all, know this: you are not alone. Whether you’re just starting to question things or you’ve got your own 125-page binder, there’s a whole community of mamas walking this road too.
If you found this post helpful, come join our email list, read more stories on the blog, or take our free quiz to help identify what’s going on with your own kiddo.
You deserve answers. Your kiddo deserves to breathe easy.
Let’s keep going, mama. Together.
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