Tuesdays are Your Turn – First Flare and Diagnosis Age

Remember all the excitement about the year 2000?

No, I don’t mean the Y2K bug and the conspiracy theorists, although those are both fun to remember. I’m talking about how New Year’s Eve loomed large in 1999 and how it felt to be alive, waiting for the next millennium to roll in.

That New Year’s ended up chaotic and frenzied for us, but not in the entertaining way. My asthma kid was a month or so away from her first birthday then, and we’d originally had big plans, a babysitter, and tickets for a big bash at a beach resort in St. Petersburg.

Instead, that night our 10 month-old spiraled down into what would prove to be her first acute flare, and we watched 1999 turn into 2000 across the waiting area of the All Children’s Hospital emergency room, on the little portable TV at the nurse’s station.

So we had a more auspicious start to the new millennium than I’d like, and that night seriously set the tone for the entire decade to follow, but my daughter’s New Year 1999 flare also mapped out a very clear path of the progression from first major flare all the way to diagnosis.

She flared badly several more times over the next year, all misdiagnosed as pneumonia or bronchiolitis, until a new pediatrician heard her history when she was two years-old. He tracked down her ER records and x-rays and diagnosed reactive airway disease and “possibly” asthma, depending on how her lungs acted (or reacted, I should say) as she grew older.

We all know how that “possible” part turned out.

What age were you/your kid diagnosed?

Related, if you can pinpoint it, what age was your first major flare?

It’ll be interesting to see your own paths between first flare and final diagnosis.

105 responses to “Tuesdays are Your Turn – First Flare and Diagnosis Age”

  1. Sarah says:

    I was diagnosed at six months of age, when my mother took me to the paediatrician because I wasn’t as active as a normal baby, and often had to stop to rest and “pant”. She also noticed that I was already a mouth breather (at an age when most babies are exclusively nose breathers!) and I was a very “noisy” breather… I was not a “happy wheezer” either, I seemed to get very distressed and cranky when my breathing was noisy…

    The doctor took a family history (which, at the time, included a mom with eczema and allergies, who would later go on to develop asthma in menopause, a dad with eczema, allergies, and asthma, and a huge number of extended family members with atopic disorders), a personal health history (risk factors: preemie, allergies, and eczema, family history, etc), and listened to my chest and diagnosed me with asthma based on the huge number of risk factors and the family history as long as my arm.

    As far as I know, I didn’t have my first acute attack (ie, worthy of an ER visit) until I was just shy of my second birthday, though I’d been having asthma symptoms pretty much since the day I was born (I started wheezing even before I left the NICU). I’ve always been the sort of asthmatic that’s more prone to slowly building attacks than sudden, serious attacks, so my serious flares can typically be headed off… “can” being the key word: after my second birthday, my asthma was very poorly controlled, and even if it was obvious that I was headed for an ER visit, my flares often weren’t headed off because either my family couldn’t afford the step-up medicine, or because I was already undersized and because I have family histories of the conditions caused by systemic steroid use (osteoporosis, cataracts, liver trouble, etc). Add in the fact that my mother buys into a lot of the “alternative therapy” bunk and my father was someone who thinks that allergies/asthma are things to be toughed out unless you’re in a life-threatening reaction or flare, and yeah… I really think my parents would have done a much better job with me if either the Internet had been available to dispense many of their misconceptions about asthma (some of which they still hold, but at least they’ve let go of the “asthma is all in your head,” and the “uncontrolled asthma should be toughed out” ones) or if they’d been referred to a proper asthma educator.

    Unfortunately, they didn’t know how much they didn’t know at the time and so had to bumble through by trial-and-error, and they never thought to ask about referral to a specialist because they always thought that the pediatrician would take the initiative for that if it was really needed.

  2. kerri says:

    I still haven’t (in my opinion, which may or may not be distorted ;-) ) had any ER-worthy major flares, but we all know my aversion to medical care haha. But, I do have flares that last for days at a time which suck. I can pinpoint that my first flare [that was diagnosed as bronchitis] began on February 15th, 2008 after a back-to-back choir thingie. And, you know, continued off and on (more on) until April 28th when some walk in clinic doc finally gave me some Ventolin. And, y’all know the wacky story since then ;-) .

    Like Sarah, I have risk factors like crazy, so while I was surprised when I was diagnosed with asthma when I was a month away from turning seventeen (which is what throws everybody off, why I didn’t get asthma until recently), I guess it wasn’t so random at all, being a premie with respiratory issues, family history, and a handful of other stuff.

  3. Samantha says:

    We first noticed recurring cold-turns-into-bronchitis at age 3 with my daughter, got told the pediatrician suspected asthma at roughly 3 1/2, and at 4 she was “officially” dx’ed at right around her 4th birthday.
    based on that her first official flare would have been around age 3, but looking back….
    she had a cold-turned-into-bronchitis when she was 6 months old. At the time i blamed it on the fact that my exhusband and his family kept telling me “she’s fine. its just a cold, you are just a new 1st time mom” when i was saying “Shes not getting better… this isnt *right*, and i think shes rattling when she breathes and that cant be right”. I finally waited till they were all gone, got with my friend who was in nursing school, and her stethoscope and she goes “yeah it sounds to me like a rattle” and we took her to an urgent care center, where i was told she had bronchitis and if we had waited much longer we would have been risking pneumonia. Long story short… now i am doing the chicken-vs-egg debate. was that her first flare because she already had asthma (i now know the meconium aspiration put her at risk for asthma) or did that bad of an infection so early somehow contribute to her having asthma down the road… I suppose we will never know though

  4. Elisheva says:

    Started having trouble breathing in the shower and during sports and stuff at age ten. Diagnosed at age 11. Have never been to the ER (am I lucky or what?), but I probably would have if my little brother wasn’t asthmatic and if we didn’t have a neb at home.

  5. Amy says:

    Sarah–Your comment has triggered the start of like 4 future posts in my head. I wonder if your mom was able to pick up on your symptoms b/c of a family history of asthma? When I look back at older video of my daughter, I’m shocked at how loud and heavy her breathing sounds, how flushed her face looks, and basically–how much she is clearly struggling to breathe well. Yet at the time, I never noticed and, having my first child young with little to no experience of babies, I didn’t even know what constituted “normal” for a child’s health.

    Kerri–You and the kid are very similar. (Which we already know.) Her tendency is also to flare for days at a time, but (thankfully) they don’t always get bad and if they do, they take a long time to build to that point. I’ve been wondering–and this is based on my own experience– if you didn’t have milder asthma symptoms when you were younger and they just didn’t get noticed until they worsened?

    Samantha–I honestly don’t know how many flares my daughter had before she was diagnosed. While I can remember the severe ones, of course, b/c I wasn’t familiar with asthma and its symptoms, I have no idea if she had been experiencing a bunch of minor flares for her first two years.

    Elisheva–Very lucky! I hope it continues, too.

  6. Steve says:

    Entered this world wheezing and cyanotic. Official diagnosis didn’t come for 9 more years. Did not receive proper medical care during my childhood or teenage years. Didn’t see a pulmonologist till I was 22 years old. By then it was too late…the damage was done. Been fighting an uphill battle to stay alive ever since.
    Moral of the story…. nip it in the bud at the first sign.

  7. Sarah says:

    My mom volunteered as a nurse’s assistant back in the days before they needed college diplomas for that and spent a lot of her late teen/college years in an emergency medicine setting, plus she babysat a lot of infants (including my many cousins – mom’s one of nine kids, her mom’s one of twelve or so, and her dad was one of fifteen, so you can imagine how big my extended family on that side is!), so I think it has more to do with the fact that she had a lot of experience in medicine and in what “normal” babies are like – plus the fact that I was a preemie, so she already knew I was at high risk for breathing troubles. Finally, I have several relatives who are medical professionals, who I suspect strongly encouraged Mom to take me in to the doctor at the time.

    Like Kerri and AG, I tend to flare for days (or weeks, or even months) at a time… My flares tend to come on slow, but there are a few things I’ve identified that can have me go from 0 to ER in a matter of minutes: hay, doing anything other than sitting quietly in really dusty rooms, and certain chocolate bars with wafers (I suspect it’s some dye or additive in the wafer, since pure chocolate by that brand doesn’t get me going, but any wafer bar by that brand does). Hard exercise in allergy season can get me going badly and quickly, too, but only if I forget to premedicate, and it’s worse if I’m dehydrated and/or outside.

    Finally, I really wish my sister would take my neice into the pediatrician and ask him to check her out for asthma… I’m pretty much certain she has it. Mom says she’s a spitting image of me, breathing issues included… she’s a noisy mouth breather, she pants, and so on… she doesn’t have my cough yet, but I didn’t develop an asthma cough until I was three or so, and she’s not even two yet. I deal with a lot of kids at my martial arts class, and none of them – not even the three asthmatic kids (and the kid I suspect has EIB) breathe as loud as this kid when she’s bad… you can literally hear her from two rooms over, and she’s already got allergies and eczema. Plus with our family history… You see why I’m concerned, and I just hope it doesn’t take an ER trip for her to get her diagnosis.

  8. Kelley says:

    My AG started daycare about 9 days before her 5th birthday (June 2008)…she developed a “cold” that turned into a cough…that just wouldn’t stop. Our primary care doc prescribed liquid albuterol, but it didn’t help much…coughing increased to vomiting from the severity of it…which led to the first ER visit for this…the neb treatment didn’t help much, though…antibiotics off and on for months… then “croup” twice in November, to where she literally could not speak for coughing so much…they gave some form of oral steroid, which cleared it up the first time…then repeat…still coughing, but on 1 puff of proair 110mg 2Xday…December was more coughing & more x-rays… and walking pneumonia with the scariest loudest rattling I have ever heard in my life… this led to the “official” asthma dx with her allergy/asthma doc, & a dx of GERD, which was apparently causing the upper resp croup (spasmodic croup) while the lower resp was asthma + chronic (& seemingly untreatable) sinus infection. 2nd pnuemonia last June.

  9. Sara C. says:

    I was diagnosed at age 17…but I can remember getting “bronchitis” every single winter from sixth grade on, and I was never an overly active kid…I didn’t really love to run and play and ride bikes and stuff, I preferred to sit outside and read…so who knows if I was just protecting my lungs, or really just preferred to read.

    Abby had RSV at 2 months of age, and classic asthma symptoms until age 7, when her lungs just started to behave…she now has reactive airways, and gets pneumonia about once a year.

    Mariella started to have trouble at age 2…a cough that wouldn’t stop. I don’t know that there is one particular “flare” that I can pinpoint. I remember calling the pediatrician and saying, “she sounds like Abby does when she needs a treatment” We just needed to do treatments far more often than Abby ever needed them. Of course, we don’t count the “good times” in terms of being cough free, or even not having any shortness of breathe…that rarely ever happens. It’s almost as if a flare doesn’t stop for more than 2 weeks or so, since she was 2 years old.

    My girls definitely benefited from the fact that I have asthma…I knew what I was looking at, for the most part…and knew that it was beyond my scope, and knew that it was beyond the pediatricians scope. Very interesting read.

  10. Samantha says:

    This has brought up some interesting things Id never thought to… my monkey she didnt pant per se, but she was always a mouth breather which i attributed to possible allergies (strong family hx of those) which it kind of is but i wonder now if that too was a sign and i just didnt know… the other thing that strikes me is. she was what we called a “high needs baby” very fussy, restless sleeper, didnt sleep for more than 2 hrs at a time till she was close to 8 months old, and even when she was asleep she was moving and restless… just like she is NOW when shes flaring. which also makes me wonder if she was experiencing minor flares or early signs but i didnt know what to look for….i always thought asthma meant wheezing..and always wheezing, i didnt know till she was dx’ed that the restless, cranky, low appetite, mouth breathing and cough were her asthma signs too

  11. Allison says:

    Oh yuck, the first big flare. It’s such a bad memory and makes me feel like such a horrible parent looking back on it. It seems so obvious now that I know what I know.

    My son was 4 (Sept. 2007) and got a cold. He coughed. And coughed. For days. My husband called me at work and said this kid has not stopped coughing. All day. We finally took him to the doctor where they quickly saw that he was using his ancillary muscles to breath and was sucking in his neck/throat with each breath. The poor kid was miserable and a probably a few short hours away from his first ER visit. They gave him a breathing treatment in the doc’s office and prescribed liquid prednisone and an albuterol inhaler. He got better after a few days, but then flared on and off for the next six to nine months really. They said he had bronchospasm, RAD, we tried Flovent. Nothing stopped the flaring until we took him to an allergy/asthma specialist in June 2008 and learned about the evils of dust mites and the beauty of Advair and got the official asthma diagnosis. So nine months of flaring before the diagnosis and relative control.

  12. MC says:

    Ah, a good and interesting question. I along with Kerri was diagnosed later on, but my diagnosis was a lot more recent.

    I grew up totally normal, and a VERY active kid. At 9 months, I was swinging myself by holding on the edge of the kitchen table. I took ice skating lessons around age 3-5. I remember when I was 7-8 I could run faster than most boys in my neighborhood who were 3-4 years older than me, except for one. I love to be active. Summer of ’08 I dislocated my clavicle, and activity came to a near halt for 1 1/2 years. About half-way through the time between injury and full healing, I remember randomly getting short of breath and getting out of air way faster than I should when singing. I thought it was related to the clavicle (which it could have been), and/or from being somewhat out of shape, and so thought nothing of it. I had a cough that wouldn’t go away prior to surgery, but when I started claritin, it stopped, so I figured it was all allergy. (Later, I realized it was the same cough as my asthma cough now)

    I wondered if I might have asthma spring of ’09, but didn’t think I did, especially as I’d never wheezed before. Fast forward to fall of ’09, beginning of college. I noticed I was getting winded and couldn’t breathe well during chapel when the bass and drums were loud, but once again, attributed it to my clavicle and recovering from surgery 3 months earlier.

    November 1-4…. several potentially life threatening allergic reactions to food, the last time, my GP sent me to the ER, where they didn’t think it was an allergic reaction, but “acute bronchospasm or asthma”. I was SHOCKED when the ER doc said asthma.

    But really, my GP didn’t think I had asthma then, and I think I can pinpoint my first major flare to a decade and a day after AG’s first. Jan 1, 2010, I had a really bad attack, which nearly landed me in the ER by ambulance, but at the time, my parents didn’t know that blue fingernails are BAD, so they took me to urgent care (by the time we got there though, my vital signs were perfect). About 2-3 weeks later was when my GP first hesitantly told me that she thought it might be asthma.

    The first pulmo I saw thought after the metacholoine challenge that I did have asthma, then he decided I either didn’t, or had controlled asthma.

    Enter second pulmo. He decided that yes, I do have asthma, and at times severe asthma. So the day I had a really official diagnosis was April 30, 2010, and I was 19.

  13. Danielle says:

    I believe my first bad one was brought on by speed skating? I was racing and couldn’t catch my breath at the finish line. Was I 10? Something along those lines.

    Like a couple other posters I had a good number of “winter bronchitis” bouts in the years previous to my diagnosis.

  14. Amy says:

    Steve–Thanks for this. It’s an important lesson, and I’m sorry you’ve had to learn it.

    Sarah–AG wasn’t a cougher until around that age, either. As a baby and young toddler, she’d breathe very, very fast and hard. I hope it doesn’t require an ER trip, either.

    Kelley–Sounds like your daughter had a similar path, only at an older age and with croup misdiagnoses rather than the pneumonia/bronchiolitis ones mine had.

    Sara–My sister gets regular “bronchitis,” too, and I’ve been pushing her to get spirometry done for years now. Your point about reading is interesting. I wonder how much of any kid’s actions – asthma or no – are dictated by the body’s needs rather than actual preferences? AG read earlier and loved it more than her sister did at the same age. She was always into calm activities like puzzles and crafts, too, but over the years she turned into an athlete. I wonder, looking back, if that correlated with her health improving? Impossible to know now, but intriguing to think about.

    Samantha–My daughter’s a throat clearer and always has been. Until I learned more about asthma, I didn’t even notice her doing it (and that her non-asthmatic sister never does).

    Allison–I write it all the time, but one of these days I’m going to write out the full, detailed story of my kid’s symptoms, diagnosis, and then the horrible mistakes I made and the way I hid my head in the sand for a long time, before we ever got her under control. It’ll make you feel better, believe me.

    MC–That comment about your first acute flare in relation to my kid’s just made me feel really old, lol. Somehow, I didn’t realize your diagnosis was so recent.

    Danielle–Age 10 – or close to it – seems pretty common for childhood diagnosis. That surprised me.

  15. Elisheva says:

    Amy – Why’s diagnosis at age ten surprising? From what I’ve seen it’s either been at birth or in the few first years of life, or around age 10-12 or so – like me. I remember when I got diagnosed the doctor said something about how puberty (or thereabouts) is a common time to be diagnosed with new conditions since your body is going thru so many changes anyway, so sometimes new things can pop up too.

  16. Amy says:

    Mostly because if children are going to outgrow some of their asthma symptoms, doctors and nurses say it tends to start happening around 9 or 10, for the same reason you mention, actually. Starting puberty appears to put some cases of asthma on hiatus – even if those kids later grow up and get those symptoms back as adults. That’s actually happened to a few people I know. Also, part of the reason asthma is so prevalent, problematic, and hard to diagnose in really small kids has to do with the small size of the airways–which get bigger as kids get bigger.

    I’ve never met anyone diagnosed around age 10. I had no idea how common it was until these comments! It makes sense, though, considering the puberty thing. Because of my daughter’s age, I’m only now learning about the effect of hormones on asthma b/c of you guys.

  17. Sarah says:

    Amy – The ‘asthma hiatus’ you mention happened to me. Though, in retrospect, my asthma probably started to return by age fifteen or so, but thanks to my “tough it out” upbringing and so on, I denied that anything was up until a flu knocked out my lungs to the point that I couldn’t walk up a flight of stairs without stopping to catch my breath at least two or three times. That in turn led to the summer of breathlessness, and the rest, as they say, is history.

  18. kerri says:

    Just saw your question here,
    I have super strong suspicion I’ve had EIA since I was six or seven, but of course, as a kid you don’t pay attention to that kind of stuff–I thought it was normal. Apparently nothing’s normal about your lungs burning when you run . . . who knew? Then, it just became normal to me, but I totally remember after this one gym class in grade nine (2.5 years before the asthma diagnosis) we were sitting in the hall waiting for our math teacher to come and I was pretty short of breath and NOT breathing properly at all.
    I guess it’s all the little stuff I didn’t notice as anything too serious till way after my diagnosis. Weird.

  19. Amy says:

    Sarah–I think the denial when/if it returns must be pretty strong for most people. Who wants that back in their lives? I can tell you that my denial over coming to terms w/just my kid’s original diagnosis was very strong.

    Kerri–Remember in the comments a couple weeks ago how we were talking about what feels “normal” if you’ve always had asthma? Maybe that was your normal & why you didn’t notice. (Like when you get glasses for the first time & realize your normal vision hasn’t been like anyone else’s normal.)

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