Mothers of Asthmatics

As a parent, you’re trying to do everything right, and you’re afraid that [what] you’re doing is going to have some measure of harm. Six years of worrying that she could die [and] trying to figure out how to get by day to day was horrendous.

When we got into a drug study program at Georgetown University Hospital, that’s when things started to change. We were given a peak flow meter, and this was 16, 17 years ago. Back then, peak flow meters were [only] available [if you] were in a drug study program. But a peak flow meter was what I used to measure her lung function at home every single day. I would write that number down on this chart they gave me to keep track of all her medications.

These are things that we as an organization help families sort through. I wrote a book called “A Parent’s Guide to Asthma,” and it’s available in bookstores and also through our organization. But there’s one whole chapter on dealing with pet allergies, and it is a complex issue – one that takes a lot of sensitivity and caring. There are no black and white answers.

But the biggest challenge of raising children with asthma is the constant guessing, “Am I doing this right? What is the long-term impact of using this medication on my child? Will my child grow right? Will my child develop intellectually okay? Why does my child behave this way every time I give him this medication?”

These are all these questions that just plague us with doubt as parents, and so that’s why we’re here as an organization. Most of us have been through this, and we understand. And I’ll tell you what. Out of my three kids that have asthma, the hardest one to control his symptoms is not the one with the severe problem. It’s my youngest, who has a very mild form, and he doesn’t want to acknowledge that he has asthma.

There’s two parts to asthma. There’s the noisy part that you see and feel. Then there’s the quiet part that’s there every single day, but it’s just not noticed. And that part is called inflammation, the inflammation that’s inside your breathing tubes – the cells that line your breathing tubes, swell, fill with fluid, and leak. They burst open and leak the chemicals that are inside those cells. When they break out of the cells, they cause greater irritation in your airways, and coughing.

So, as parents, teachers, physicians and policy makers, we need to come together to structure healthy learning environments. And what is healthy as a learning environment for students with asthma is healthy for absolutely everyone.

But as a mother of four children, three of whom have asthma and allergies and other kinds of health problems, I am very encouraged that it can be done. Just take things one step at a time, and don’t try to do too much at once.

However, it [helps] to know what you’re looking for. For example, I knew that I wanted Brooke to be able to sleep through the night without an asthma attack. I wanted her to go to school and not miss more days than the next kid. I wanted her to be able to run [and] ride her bike. I wanted her to be able to spend the night at a friend’s house. These were all things that I put up at the top of my wish list, and I said to my doctors, every time I met them, “These are the things I want to see happen. “

That’s where I recommend that every family start. Define your goals and don’t accept anything less.

And you [may] have to slug your way through. It’s heartbreaking to talk to families who are denied access to an allergist, or they’ll say, “Nancy, I never knew that my child could actually see an allergist because the doctor never suggested we see one. So, I kind of figured, A, I didn’t need one; B, if I really did need one, he would have recommended one.”

And what’s sad is I talk to families whose children have died from asthma. I’m thinking of Vicky Modica and her son, Mikey. Mikey died, about three years ago, when he was 8, of an asthma attack that could have been prevented.

She didn’t know [asthma could be fatal]. She told me things like, “Nancy, I was doing everything I was told to do. I did everything.”

But what she was not told is that Mikey should see an allergist. She was not told that Mikey needed a medication to treat the inflammation on an ongoing basis. So, she was just treating him when he was having these attacks, and when he died, he was just being a normal kid. He was just playing and looked fine – had a little cough and a sniffle going – but the attack that killed him was one that came without warning.

Another mother called me the other day, and she said her son was playing at the computer, and he said, “You know, mom, I need a breathing treatment,” and he stood up to take his because he’s 11-years-old and that’s what he normally did. And she said she saw he was turning blue, got the breathing treatment on him – but was not enough. She said later, “He didn’t look like he was going to die.”

Vicky Modica has initiated a campaign that people will be seeing throughout the country over the next few months called “Mikey’s Mom Didn’t Know Asthma Could Kill.” It’s a short dramatic story because her whole philosophy is, “It’s too late for Mikey, but I want other people to know that there are things that they can do to prevent asthma death.”

[When] he was a teenager, I would go to his basketball practices and see that he would stop about halfway through running across the court, and lean down and put his hands on his knees. He would lift his chin up like he was gasping for air. And so I recognized – I’d seen a picture in a book at that time, – that this was a stance that athletes will often take when they have asthma.

So, ironically, when I asked him, “Now, are you having trouble breathing?” he says, “You know, my chest makes funny sounds like Brooke’s when I’m exercising.” Sure enough, I took him to the doctor and right away [he was] diagnosed [with] asthma. So, he was able to treat his asthma before he exercised by using an inhaled bronchodilator, a medication to relax the airways so that they didn’t tense up when he was exercising.

So when you contact us and join, you’ll get our newsletter or our magazine. You’ll get discounts on products that arrange for you and all kinds of good help by just picking up the phone and calling us.

You can reach us at 800-878-4403 and you can also order our catalog through our Web site, AANMA.org.

And he just gave me an inhaler and he said, “Use this when you feel like you need it.” The mistake was I was never taught how to use that inhaler. My daughter wasn’t using one. I didn’t know the first thing about using it. No one ever told me I could overuse it, and I was coughing so hard from an asthma attack that I broke a rib.

Yep. I wound up in the hospital for a week, and I had been using this inhaler that he gave me every 20 minutes. I know that sounds like a very stupid thing that I did, but I was following his instructions. He said, “Use this when you feel like you need it.” So I learned right then and there that I almost left my children without a mother, and that even though I wasn’t wheezing and making sounds like my daughter, that asthma is a very serious disease. Just this burning feeling in my lung and the coughing was enough to break my rib and keep me in the hospital for a week.

Here’s another nugget. Pay attention to your total health. The way you live your life definitely has impact on your health, and if you have a chronic illness, you must be even better to your body than you should normally be. You know, get enough rest. Get enough food, like fresh vegetables and fresh fruit so that your body’s not trying to constantly remove preservatives out of your foods.

So having it written down means you can go back to it and say, “Aha. This is what I’m supposed to do” and get things on board faster. You can prevent the forest fire – like Smoky the Bear used to say – by putting out your match appropriately. That’s what you have to do with asthma. At the first sign of a flame, you must extinguish it. But you can prevent it as well along the way.

Your asthma can be controlled. Expect nothing less.