Learning to Advocate

ag_inhaler

I hope you all had a peaceful (impossible, right?) and healthy Christmas.

Remember how we discussed stress both good and bad as an asthma trigger? And remember how the AG came through Thanksgiving and most of December with no major illness or flare, and while it looked like she’d set a new personal best of twohealthy holidays in a row, I was kind of waiting for the other shoe to drop?

It dropped.

I’d be shocked–shocked I tell you–if it hadn’t, though. With her little sister battling a cold and ear infection right before Christmas and the two of them sharing a bedroom while their uncle from San Antonio used the other one, the Asthma Girl was bound to get sick, too. However, she didn’t start start sniffling and coughing until the morning of the 26th, so yes we were all about a flare-free Christmas over here.

New Year’s is looking iffy.

Then again, maybe not. Asthma generally requires catching flares at the right time before they spin wildly out of control, and the trick–there’s always a trick–is pinpointing that critical moment. It took a long time to find that point with the AG, who has intrinsicrather than allergic asthma, because the infrequency of her flares juxtaposed against the sheer severity of them when they do occur means the critical moment is so tiny as to appear nonexistent. When my daughter gets sick, she gets really sick very fast. I call it multiple personality asthma because the AG is like 2 different patients–the one that doesn’t flare much because of good maintenance and a little luck and then the severe one she is when she does flare.

Trying to catch those flares at the beginning, even with the peak flow meter to help out, felt a lot like trying to catch something as elusive as air when my daughter was younger. If I couldn’t see when she verged on the tip of a severe flare, how could I make sure to up her meds when she first reached it? That’s when I started thinking about how she used albuterol, and how I could help her use it more effectively.

Albuterol, as you know, is the go-to drug of choice to relieve asthma flares. The instructions for it seem simple. When breathing problems and/or asthma-induced coughing fits start, your kid uses the albuterol inhaler to make the flare go away.

Haha, I know some of you are saying. If only.

If you’re not saying that, here are just a few ways albuterol use is not so simple:

–A small number of asthma patients simply can’t tolerate albuterol, and it actually makes their flare symptoms worse.

–Patients who can use albuterol successfully may not respond well if they start using their inhalers too late into a flare, and the inflammation may warrant a burst of oral steroids.

–Using albuterol as the only asthma treatment is a bad idea for persistent asthmatics of any severity because it doesn’t treat the underlying pulmonary inflammation.

–For all but the mildest cases, albuterol use alone will generally not help asthma much unless a whole host of other factors and treatment issues are taken into account.

I love this quote from Rick’s blog:

We hate to break it to you, but the truth is that Albuterol does not scrub the lungs clean of all ailments.

Yeah, that pretty much says it all.

And because illness in my daughter runs a very short distance between initial symptoms and respiratory complications severe enough to keep her in bed and hacking all night for at least a week, albuterol use when she’s sick is not nearly as cut-and-dried than *use every 4 to 6 hours as needed.*

My line of thinking 4 years ago in the midst of all her severe flares and the desperate race to get this lung disorder under control: if I know she’s going to flare badly every single time she gets sick and I know starting up the albuterol at the beginning of the flare still ends with me chasing it rather than treating it, why not try pre-treating with albuterol at the onset of illness, the way exercise-induced asthmatics do before playing sports?

And it worked. It so totally worked and I was shocked at this, my first true victory over this bitch of a disease. Every 4 hours without fail at the very first sign of cold or virus, the AG puffs on that albuterol even in the absence of all flare symptoms. This regimen doesn’t stop the flares altogether, but her peak flow numbers and lung function don’t usually spin wildly out of control when she’s sick anymore. Plus, she stopped ending up on prednisone after every illness. That’s why she’s on albuterol now, with her peak flow numbers still in the green, and that’s why she may feel completely fine by the time the fireworks start on New Year’s.

I’ve had pediatricians look at me funny and remind me of albuterol’s as-needed designation when they find out how frequently she uses her bronchodilator during colds. Until, that is, they listen to her clear lungs and strong and steady breath sounds in the midst of a bad cold. Or until they listen to me explain how severe her flares get without this regimen and how she now actually sleeps all night without needing midnight inhaler treatments (usually, not always). Or when they look through her records and realize she hasn’t needed prednisone in 2 1/2 years.

One man’s meat is another man’s poison, and I think that’s true for asthma maintenance, too. This plan works for my child, and doctors say that as long as it keeps working without any major side effects, then she can stay on it. But the real story here is not the albuterol–it’s the clear and steady communication about the albuterol between the AG’s doctors and me.

I’m no children’s medical expert and cannot give medical advice on asthma or any other health issue, but I am the expert on the day-to-day asthma symptoms of my daughter. I’m serious. I’m the one who sees her everyday and treats her and understands what triggers set her off worst and how to avoid them. Why?

Because I’m her advocate.

That word is kicked around on health and medical sites all over the place, but it’s meaningless without steady practice. I’m still learning about asthma every single day and my daughter’s symptoms will probably change again sometime and I’m sure there are more mistakes over her asthma in my future, but learning how to advocate for her health has taken away my powerlessness in the face of this scary illness. If you’re an asthma parent yourself, I hope advocacy is the one idea you take from this blog.

  • Being your child’s advocate means reading all you can, everything you can, so that you can make informed treatment decisions.
  • It can mean a willingness to change treatments–under medical supervision, please–if the old ones don’t work.
  • It means asking questions until you understand.
  • It means trusting yourself, and getting your asthma education to the level that the pediatrician trusts you, too.
  • It means making the medical community listen to you, really listen and understand what you’re saying.
  • It means a frustrating path sometimes, but one that has the potential to change your child’s life.

8 responses to “Learning to Advocate”

  1. LivingWithAsthma says:

    AG is so cute, even when she is puffing on her inhaler!!! Great post Asthma mom, your tireless efforts have truly paid off, not just for your AG but mine as well!! Thank you for your never ending search for knowledge and for taking the time to share it with the rest of us.

  2. Asthmagirl says:

    Thanks for sharing that. I can see that I share many asthma characteristics with little AG.
    I wish I could still rely on my peak flow as and indicator but the last few flares it has stayed strong and failed to indicate that there was an issue. Thus by the time I’ve struggled through the denial, made a dr. appt and requested prednisone, I’m sometimes beyond a 5 day burst and a candidate for a nice taper. Nothing that I’ve found yet has altered this. Things I’ve tried include the albuterol dosing, starting a 6 hour rotation on nebs with albuterol and atrovent, increasing my flovent from 110 to 220 2x per day. Someday I will figure this out. I would love to go 2 1/2 years without pred. I have only managed 8 months so far!

    Thanks for sharing your wisdom and stories. I really appreciate you for all you share!

    Big AG

  3. Asthma Mom says:

    Living/Cara,
    Well, I don’t know that I’d call them *tireless,* lol. There’s been plenty of exhaustion along the way, of course! But thanks, and I hope Margaux keeps doing okay. Moms like you who ask other moms like me questions when their kids are diagnosed are the ones who amaze ME.

    Big AG, (love that, btw)
    I also love your use of the word *wisdom* since I do a lot of guesswork–but thanks for letting my head swell a little this afternoon. 🙂

    It’s hard to judge, but I bet overall it’s probably easier to treat a severe child than to be an adult trying to treat your own severe flares. I know I have a hard time limiting my own activities when I’m sick–and this even WITHOUT a chronic illness–and giving myself a chance to rest, while as the AG’s mom I can say, *Nope, sorry. You’re not doing that. And come do your inhaler!* and I know she’ll (for the most part) listen. Because I can always threaten her, of course. 😉

    And then there’s the whole side issue of adult-onset asthma generally presenting itself as more severe than child-onset. I do hope you get this figured out and can increase your times between steroids–this thing is just so damn tricky sometimes.

  4. BreathinStephen says:

    Excellent post as usual.

    Are you sure you wouldn’t be interested in a career as an Asthma educator? or maybe a Respiratory/Nurse specialist ?

    We need more like you..

  5. Asthma Mom says:

    Aw, thanks Stephen. I’ve been thinking about it actually– figuring out a way to get someone else pay for it in other words (still have one final student loan hanging around in this family, lol).

  6. BlessedMomof4 says:

    Awesome advice on advocacy! I am dealing with that right now with my 11 dd, who asthma is EXACTLY as you describe….she will be fine for MONTHS and then the bomb drops and we are looking at months of coughing until I finally challenged the Dr.’s to send her to a specialist. Your post is very encouraging! Keep up the great work. I go back in a couple days to push for a quicker referral. They have us down for Jan. 30th with the military doc, but I will push to be referred out if they cant see dd sooner. Thanks again for your blog!

    Take good care,
    Nadya
    mom of 4 precious kids
    RN, BSN

  7. Asthma Mom says:

    Hello again, BlessedMom.
    Isn’t that difference between her well days and her flare ones so HARD to get used to? The AG’s sudden descent into severity can STILL catch me off-guard, even now. Keep pushing against all that military red tape–that’s advocacy, too. 🙂

  8. freadom says:

    You said: “I’m no children’s medical expert and cannot give medical advice on asthma or any other health issue, but I am the expert on the day-to-day asthma symptoms of my daughter”

    You ARE an expert. I read your site and it is impeccable. You have it absolutely right by everything you say here. Your daughter is very lucky to have you as a mom. You are an amazing person.

    I say this as a former child asthmatic more so than as an RT. I know what it’s like to have a mom who has no clue (no disrespect to my mother she is great).