Because today is World Asthma Day,
Because the WAD theme this year is “You Can Control Your Asthma,”
Because most parents and patients facing a new diagnosis won’t know the first steps on that road to maintenance and control,
And because some of them will end up here through Google searches,
Let’s leave them some advice.
Say I could sneak back into history and face my kid’s diagnosis all over again for the first time. I’d find a strong, supportive, in-person or online community of people living with this condition and join it, fast, before I did anything else.
If you could give just ONE piece of advice to new asthma parents or patients, what would it be?
(P.S. How adorable is the Sidekick? That’s her, very serious and trying to give me advice when she was 5.)
Ask Questions, of your friends, the other asthma parents, the doctors… do not be afraid to ask “what does that mean” “why do you think this is a good idea?” or “what about ____?”
Start a blog and reap the benefits and good times!
But for real? Never give up, and fight for every inch of asthma control you can get going on, and don’t settle for anything less than what science and medicine has to offer you or your child.
Be stubborn. If your doctor says, “I’m satisfied with your control.” and you’re not, make sure you tell them. Don’t just think that your doctor must know what you’re talking about or whatever. If you think you’re uncontrolled, you’re probably right, and if your doctor thinks you’re not, either a) your doctor is out of date on current asthma info, in which case you need a new doctor, b) your doctor doesn’t take you seriously, in which case you need a new doctor, or c) you haven’t successfully communicated the severity of your symtoms, in which case, you need to make sure that your doctor knows what you’re going through and don’t try to make it seem less bad than it is with stuff like, “Well, I’m okay except for when…” because then your doctor will think you’re okay.
If your asthma is stubborn to control, keep at it. You’ll eventually find something that works.
And so on. Asthma can be a stubborn disease and it can be made worse by bad doctors and inconsiderate people. You just have to be more stubborn than it is.
Do not waste your time by going to your/your child’s regular doctor over and over and over… find a good specialist as soon as you can. They can gauge the severity of the asthma as well as how well it is (or is not) controlled better than any other physician, since this is what they deal with everyday (and they have spirometers and such). I know we’re only supposed to give one main suggestion, but I have to add “follow your gut.” If you feel something is not ok with your child, trust that feeling… and follow Sarah’s advise and don’t give up. This is partially why, at least for me, seeing the specialist was so important.
I agree with all of these comments, very well said.
My advise would be to talk to as many people as possible, as many of these comments highlight, you can not always rely on your doctors word.
Blogs, chat rooms and websites are the best place to gage honest opinions from like minded people. Read peoples comments and don’t be afraid to ask questions.
I would also highlight the importance of being prepared! You never know when an asthma attack will strike – I make sure I wear my medical alert band at all times and have a card in my wallet, so should I suffer an attack, the vital information is always there.
I also meant to add:
The Sidekick is ridic adorable in the picture! <3
Happy World Asthma Day to you and your family, Amy!
I could just eat Sidekick UP, she is so cute (and I get that look a lot, from my kidlets)
As for advice…Ask questions, find a specialist…and the first one you find might not be the right fit. Don’t be afraid to fire doctors if they aren’t working for you. Remember that even if your child isn’t the sickest child at your doctor’s practice…they ARE the sickest child at your house, and they deserve time and attention too. Don’t be afraid to insist on it. Don’t be afraid to ask WHY? If you aren’t comfortable with a course of treatment, ask WHY the doc thinks it’s the best one…and if you still aren’t comfortable, ask for an alternative.
on an organizational note. If your child takes multiple prescriptions, make sure to keep a notation with you, names of medication, dosages, timing. If anything ever happens…you might not remember, even if they have been on the same medication for years.
And FINALLY…you know your kid best…don’t ever underestimate the power of mom’s (or dad’s) intuition. If you think something is REALLY wrong…it probably is.
Okay, most of you totally ignored the one piece of advice rule, but I figured you would because you’d have so many helpful things to say. That’s why I featured the Tuesday questions in the sidebar–I don’t want any new readers to miss your great responses.
Also, the Sidekick may be 8 now, but she still looks like this pretty much all the time.
Amy, it’s just because there isn’t any one thing that’s MOST important. I TRIED…but I just totally failed.
My underlying point was about stubbornness, but I guess a bit about good patient-doctor communication got in there, too. That’s just because the past few months, I’m starting to realize that how I word my discussions with my doctors makes a huge difference in how they interpret what I’m saying. For example, my “I’m okay except for when…” example is pulled straight from my last doctor’s visit. Because I used the phrase, “I’m okay,” the doctor clicked onto that and assumed that what I was complaining about was minor. If I could sneak another recommendation, it would be: Be frank and blunt. Don’t try to cushion what you’re saying since it will make it harder for the doctor to figure out what you mean.
Sara C–I’m glad you failed! There’s such good advice in this thread, I’m going to condense it all and repost as a separate article.
Sarah–That’s such an excellent point for non-asthmatics, too. Being “frank and blunt” does change the whole tone of the visit–I’m guilty of saying “I’m okay, except” even when it comes to my own health. Thanks for adding this!
i’m TERRIBLE for saying “I’m okay . . . but . . .” I didn’t even realize it until now, but I do that EVERY SINGLE APPOINTMENT.
I think part of the problem is when the doctor walks in and says “how are you?” Society has molded most of us to say “good” no matter what, and that kind of sets the tone that EVERYTHING is good, even if it isn’t.
Yeah, me too. I just put it together, like this week that the appointments where I come out feeling like I just finished talking to a wall are the appointments where I used the “I’m okay except for…” and the ones where I actually get stuff done are the ones where I just come right out with whatever’s bugging me.
I remember a visit last year. I was flaring real bad and I’d just come back from a week of crappy flaring at my parent’s place, and the doctor came in and said, “So how are you today, Sarah?” I said, “Pretty crap, actually.”
… well, since I was so short of breath, it was more like, “Pretty *breathe* crap, *breathe* actually.”
It set the tone for the entire visit. That was the one where I went from Advair 125 to Advair 500 + Singulair in a single visit (which worked pretty well until fall allergy season hit).
Incidentally, I should probably call my allergist and see if I can get in sooner than the 9th of June: My allergies went from “kinda stuffy if I raise dust” to “So stuffy, I can’t breathe through my nose, my allergic shiners have doubled in size, and I have visible swelling on the outside of my nose” literally in the space of a day, and if my allergies are decompensating, my lungs usually aren’t far behind, so I really need to nip this in the bud.
Happy post-WAD! I’d say make friends with other asthmatics. Live and learn. Share experiences.
I wonder too…especially for us LONG term sufferers…well…we’re so used to feeling like crap that we are “okay” (in terms of US…however if a NON-asthmatic felt like we did…it would most definitely NOT be OK)
Mariella is SIX, and if you ask her…”how are you” or “how are you feeling” her answer is ALWAYS “I’m fine” doesn’t matter that she’s barely moving air, her lung x-rays look like there is a sheet of white paper behind them, or she’s turning blue…she giggles at you and answers “fine” She doesn’t remember feeing anything OTHER than this…so this is her “fine”
Kids are the worst about switching moods, instantly, once they hit the doctor’s office. My asthmatic happens to be my drama queen also, so she thrives on the attention. I remember watching her bounce off the walls, laughing & dancing at the appointment, while at home she was only getting around 5 hours’ sleep b/c of the flaring.
Sara–I’ve often wondered, what is my kid’s “normal”? It probably feels nothing like my normal, and she’s never known anything different. Like when kids get glasses, and they never knew they were seeing differently than the rest of the world.
Just because one doctor says you’re either well controlled or don’t have asthma because of one test result, doesn’t mean it’s true. Don’t be afraid to ask questions, and ask to see another specialist.
One pulmonologist said I either was well controlled or didn’t have asthma, but just 3 weeks later, another one said I have asthma that’s severe at times.
Don’t give up. When my mom asked a friend for advice and wisdom with dealing with asthma she said 3 words: “Patience, patience, patience.”
You’ll get there, though it’s not always an easy road. Get connected with others who have been along the same path, and who are going through it. Don’t give up. Do research and find out what you can.
Amy, that just reminded me of when I first got glasses (I’m myopic with a hint of astigmatism). I remember running around like a mad thing marvelling over how “Everything all clear like a picture!” I honestly didn’t know that most people see like that all the time. Since I was a bit of a troublemaker at school (boredom + smart kid with low boredom tolerance = baaaad), I normally sat at the front of the class so my poor vision wasn’t noticed until I couldn’t even see the board from the front row (and even then, it wasn’t noticed for a while because the teacher assumed it was just me acting up again).
MC–Patience for sure. I don’t come by that particular trait naturally, but I sure had to learn it, fast.
Sarah–I got glasses in first grade and remember doing the exact same thing. When AG got hers, she was all, “Mom! Everything looks so different.” I said “Yes, I know. I remember getting glasses for the first time. And she said, “No, but it looks really different!” Still makes me laugh.
Mariella got glasses last fall, and we were driving home after getting them and she said “Momma…the trees look different” So I asked what they looked like and she said “Trees” I asked her what they looked like before and she said “FUZZBALLS” She just didn’t realize that they weren’t SUPPOSED to look like fuzzballs. Her normal was blurry items and fuzzy edges. She has not forgotten her glasses, even once since she got them…because NOW she’s aware what the world is supposed to look like now.
I think as our breathless kids get older, they learn that not everyone feels like they do…but right now, this IS their normal…so, unless its’ particularly WORSE than their normal…even if they are doing crappy, they feel normal, so they answer “fine”
I think that has a lot to do with it, Sara. Actually, with my allergies, I’m only what I would consider “mildly” reacting at this point (slightly swollen fingers, a few hives, stuffy and runny nose and a teeny asthma cough), but considering all the medicine I’m on, the doctor told me this morning that if the new stuff she put me on doesn’t work to bring me under control, it’s oral steroids or hospitalization. I was floored. Hospitalization, just for how I feel about 80% of the time? Really?
So, it occured to me that the whole “not realizing that most people don’t feel like that” thing applies to adults, too. She was very alarmed that I’ve got hives, swollen fingers, allergic dermatitis and severe allergic rhinosinusitis despite being on two antihistamines, flonase, Singulair, etc, but to me it’s pretty much normal for this time of year. That my doctor is talking hospitalization is a wake-up call, actually.
I love this community. Really. hadnt even thought about the fact that part of the reason my girl always says shes “okay” or “pretty okay” when i ask her is that shes young enough that as far as she knows she IS okay.. this IS her “okay”, as long as she isnt actively gasping she doesnt know any different….
As only having asthma for a short time, and things coming on so quickly, I’ve known for most of my life what the ‘normal’ that most people go through and know. But when I have trouble breathing, then my body has quickly learned to accustom to the ‘normal’ of asthma flare-ups… and I forget really what it feels to breathe like you’re supposed to. Just last week I had been flaring for at least 3 weeks and when I was given atrovent in addition to albuterol for my neb, and told to use the neb as primary means of relief meds instead of inhaler, I was shocked after the neb that night. The amount of air I could get in and the ease to breathe was astonishing. My ‘normal’ really isn’t very ‘normal’. It depends on how I’ve been for the last 12-24-48+ hours.
Likewise, when I’ve been having a good breathing streak, when things start to flare-up, I’m often kind of surprised at how poorly I can breathe. It’s all subjective on what I’ve gotten used to.
MC–I’ve always assumed having asthma her whole life (more or less) was a disadvantage for my daughter, at least in terms of judging good vs. bad airflow. Even when she’s not flaring, she always breathes a little faster and more shallowly than her younger sister–the difference is especially obvious when they’re sleeping. Plus, when she forgets to use her inhaler at school (like this week, when she’s been flaring/recovering from a cold), I always wonder how she forgets, when her symptoms are so obvious to me. Your comment has me thinking maybe she’s the same way & her body adjusts the flares the way yours does. Thanks for the insight.
I think another thing in addition to my body adjusting to my flares is that I very very often think to myself, “I’ve been worse.” “It’s not that bad.” etc. So when my body has adjusted to a certain feeling, my brain tells me that it’s not too bad, and I easily forget to use my inhaler(yes, a college student can do that too). And when I’m sitting around doing homework, I have an even greater tendency to not realize that I need beta agonist. It’s when I’ve been sitting there and I all of a sudden clamp up, or that I get really sob on just standing up that I realize that I should have used my inhaler or neb awhile ago.
Just last week I was home and had a bad flare-up landing me in urgent care. I’ve gone through that level of restricted breathing so much recently that I didn’t really think that it was THAT bad. It took my mom to see the situation from the outside to call advice nurse(she was going to have me call, but I was too short of breath to whisper more than 3 words at a time) and decide that I needed to go to urgent care.
And when I’m flaring, I don’t usually think clearly, making me prone to use more of my inhaler than I probably should, or not enough.
MC – yup. Same thing happens to me. If my breathing gets bad too quickly I tend not to realize it because I can’t think clearly enough to figure out something’s wrong. It takes someone else to point out to me how badly I’m doing. What’s crazy is that the attack itself isn’t scary because I don’t realize what’s going on. But looking back on it always freaks me out. To know I can get that way.