My Daughter’s Asthma Symptoms Weren’t Like What I'd Seen in the Movies

38
38

I have a relatively healthy daughter who would get colds twice a year that were hard to clear up. What started as typical symptoms would turn into a post-nasal drip cough that would go on and on and on.

Then she took a nose dive during what our family now refers to as the “Worst Spring Break Ever.” On Friday, we were packing to head out on a cross-country trip when my daughter developed a high fever accompanied by the strangest cough. My first thought was the flu.

Monday came along and she still had a high fever and a cough that seemed to have a wheeze at the end of it. I hadn’t heard her cough like that before. Off to the pediatrician. After the flu and strep tests came back clear, it was deemed a virus was affecting her lungs, and we were given an inhaler. I talked with the pediatrician about our trip. We were supposed to leave the following morning, but given my daughter’s temperature and the distance we were going travel, we were advised to stay home. Spring break was officially cancelled.

During the next two days, we made two more trips to the pediatrician’s office and one to the hospital. In addition to the inhaler, my daughter was given steroids for the cough and X-rays for pneumonia. By Wednesday, her cough was loud and deep, and that night she started coughing and didn’t stop. It seemed to shake the walls and floorboards in our home. No one could sleep. I thought to myself, “What kind of virus is this?”

The next morning, I called the pediatrician and spoke with a nurse, who could hear my daughter through the phone, and she mentioned whooping cough. Apparently around the age of 10, some children can catch whooping cough just as the vaccination begins to wane before the booster. The nurse told me to bring her in again.

We got to the doctor’s office, and my daughter’s cough was rattling off the office walls. Before our pediatrician could even walk entirely into the room, she said, “Oh no!” Then she told me she could no longer help my daughter, and she needed to go the ER. I associate the ER with life-threatening conditions. “Really, is it that bad?” I asked. The doctor grabbed both of my hands and answered, “Yes, she needs breathing treatments that I can’t give her.” “Oh,” I replied, feeling deflated.

At the ER, they gave my daughter breathing treatments and released us with a breathing machine they give to children who have asthma. The ER doctor indicated that perhaps I’m overreacting. I wanted to yell, “My doctor advised me to take her here. I didn’t just rush here because I’m worried about a little cough!” I held my temper and didn’t comment, but now I was mad.

It turned out that my daughter does have asthma. Remember the colds I mentioned earlier? That was actually a cough-variant asthma triggered by seasonal allergies and exasperated by cold viruses. We didn’t pick up on it at first because it only presented as a cough for her, not as the wheezing you might see in the movies. It took the “Worst Spring Break Ever” and my daughter’s asthma attack to realize she had it.

My daughter’s pediatrician, who is a former pediatric ER doctor, stands by her decision to send my daughter to the ER. Now my daughter takes multiple medications to help manage her asthma. She no longer consistently gets never-ending colds, but it’s been a learning process because her day-to-day asthma symptoms don’t present themselves the way I’ve seen them depicted in mass media. For her, the most telling symptom when she’s having problems is a cough, and it’s something we can no longer ignore.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

38
38

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

To the Student Who Said It’s Unfair I Have a Locker When Others Don't

58
58

Today you saw me using my locker in the lab buildings at the university — the ones we aren’t meant to have on long-term loan and are emptied out after each session. You saw me putting the key back on my lanyard, putting my lab coat, folder and some other bits into the locker, shutting the door and walking out. I heard you mention to your friends how unfair it is that I get to have that locker and nobody else can. Well, let me explain why I have that locker.

I have a couple of health problems: brittle asthma, adrenal insufficiency, diabetes, supraventricular tachycardia (in other words, my heart goes super fast sometimes), I’ve had both hips replaced and am waiting on shoulder surgery. I also have a couple of life-threatening reactions. (I’m not actually in university right now, because I’m in the hospital following a life-threatening exacerbation of my asthma.)

collection of medical supplies and medications
Vicky’s medical supplies.

So, needless to say, I have to carry a fair amount of extra medications around with me. It’s what I like to call my “get out of jail free” kit. It’s basically the stuff that, if it really came down to it, would keep me alive. It sounds dramatic, but it’s kind of true. What you see in the photo is my EpiPen — for when I react to the balloons that are currently all over the student union, or have a massive asthma attack that goes from zero to 100 in five seconds — my steroid injection kit, some nebulisers to stop my airways from closing up when I have a reaction to someone’s deodorant, and some cereal bars for when my blood sugar goes dangerously low and I start getting grumpy and confused. That little orange tin has a lot of tablets in it, too. It really does start to add up. And that’s not including the device I have to carry around for my nebules or my blood sugar testing kit.

So I have to carry a lot around in my backpack. Also, don’t forget that I’m waiting for surgery on my shoulder, so carrying a heavy bag can add to the pain I get there and in my hips, which have both been replaced.

Add into that normal university stuff, like books, notepads, a pencil case, a drink and then whatever else I have in my bag. It gets heavy. I also like to keep spare supplies in there in case I manage to forget something important, so I’m not stuck at school without a rather important medication or piece of equipment. I think that’s fair.

But I know “it’s really unfair that there’s one rule for one person, and another for everyone else,” and I would totally agree with you that they should provide us all with lockers. But there are about 3,000 people at our university.

I know you didn’t mean it in a nasty way, or at least I hope you didn’t. But I hope now you can see why I don’t like having to carry a heavy lab coat, my folders and lab stuff around with me all day after a lab, and why I do need to have a locker. It’s important.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

58
58
JOIN THE CONVERSATION

When a Stranger Suggested My Asthma Was All in My Head

220
220

I was at a friend’s graduation party when a family friend of hers who I had never met before asked me if I had been a “sheltered child.” I assumed he meant had I grown up with parents with conservative ideals so I said yes. “Ha!” he yelled, “That’s why you have asthma. Amish kids don’t get asthma because they’re outside all the time.” But before I could tell him I misunderstood his question and I had, in fact, been an outdoorsy kid, he said asthma was a mental problem and he had read about a mysterious “study” that supposedly stated Amish kids have lower rates of asthma than the general population.

This attitude has followed me my whole life, from the teachers who had no interest in helping me catch up when I missed school because I was sick to gym teachers who made me run until I blacked out to prove a point.

I’ve tried every medication there is. I’m on the most expensive and, apparently, most generally effective medication there is for adults with asthma like mine. And my asthma is still not what most people would probably deem “well controlled.”

Sarah Kuhn.3-001

A lot of people do grow out of asthma, yes, but some people don’t. Your cousin’s asthma may not be the same as the kid next door’s asthma. It can affect people in different ways. And no, it’s not in my head. I didn’t make part of my left lung collapse when I was a 7-year-old kid mentally. My parents didn’t cause me to have it by sheltering me. And no stranger ever has the right to approach anyone with any illness and try to dictate their own story back to them, invalidate them or give them crackpot “advice” about a “magical cure” as if we don’t know anything about our illnesses.

After 27 years of living with a chronic illness that interferes with my daily life, I know the most valuable thing you can do for any sick person, regardless of what kind of illness or disability they have, is to listen and validate. To really hear what they’re saying and not to try to interject because some things you hear might scare you or make you uncomfortable. It’s the complete opposite of what most of us, at least me, have experienced our whole lives, but it’s a crucial step in tearing down this strange victim-blaming culture I’ve seen in the chronic illness world.

We’re all making the best out of what we’ve been given. It’s not all in our heads. It’s real and it can be scary. Trust me, I know. But acting like our symptoms and illnesses don’t exist isn’t helping anyone.

220
220
TOPICS
JOIN THE CONVERSATION

These Free Comic Books Explain Asthma in a Way Kids Can Understand

169
169

In the United States, about 7 million children have asthma, a lung disease that inflames and narrows the airways, according to the National Heart, Lung and Blood Institute. Even though so many kids are affected, not all children understand why some of their classmates may have a hard time during recess or gym class. That’s where Medikidz steps in. This organization created a series of doctor-written comic books to explain medical conditions to children.

Asthma_

Their latest series follows a 10-year-old boy named Savion as he learns the science behind asthma and the importance of proper treatment for the disease. The most recent book in the series focuses on the right way to use an inhaler.

Asthma_Book 1 Scene

Medikidz and its partner Meda, a pharmaceutical company, believe education is the key to helping people living with asthma. In the United States, there are more than 3,600 deaths due to asthma each year, many of which are avoidable with proper treatment and care, according to the Asthma and Allergy Foundation of America.

“One of the best ways to help prevent these unnecessary deaths is to ensure that patients and caregivers have a better understanding what causes asthma, how to recognize worsening symptoms and the importance of listening to your doctor and taking your medication on a regular basis,” Stuart Loesch, Vice President of Marketing for Meda, told The Mighty in an email.

The books are available for free, and anyone can get them online.

 Related: Explaining Epilepsy to Your Kids Just Got Easier

 

169
169
TOPICS
,
JOIN THE CONVERSATION

When Non-Doctors Give You Medical Advice About Your Child

789
789

I’m not a doctor. I haven’t even made it to Season 4 of “Grey’s Anatomy” — yet. However, my son, Branko, attracts a lot of attention from amateur doctors, people who think they know a thing or two about medical science. Here are a handful of medical clichés people have shared with me over the years:

1. I would never get the flu shot; it doesn’t work, and I would never give it to my kid.

Personally, I think that’s a really bad idea, but beyond that, I’m pretty sure I wouldn’t let my son out of the house if the flu shot were unavailable. For him, influenza means a hospital visit with the possibility of a surprise intubation. (And FYI, a surprise intubation isn’t any more exciting and fun than a planned intubation.)

If you don’t want to get the flu shot, that’s fine. But please don’t tell me about it, because I will literally obsess over whether you have sniffles or not until flu season is over. And please, never mention that the flu vaccine “doesn’t work.” For my own sanity, I need to believe that it works.

2. My best friend’s cousin’s daughter’s aunt had the same thing as him and she’s fine now.

Part of the reason why I started writing about my son’s medical condition was to make the complexities of his condition more clear, for both myself and the people in our lives. He has a one-of-a-kind genetic condition; there isn’t even a name for what he has. No one else’s symptoms are quite like Branko’s. Nobody. No one. Zilch.

By casually mentioning someone had something similar and is now “fine,” the severity of his condition is downplayed. It’s a bit insulting. Having bones like his — ones that randomly grow however and wherever they feel like — is serious business. It’s not a sunburn. It’s not a canker sore. It’s not even the same as when your friend, Sammy, had a cast for two weeks after falling off a Pogo Ball.

Also, what does exactly “fine” even mean? Is “fine” the same as being an average, healthy person who doesn’t need a mobility device? We aren’t really striving for a typical definition of “fine” over here; I suppose our definition is a bit more relaxed. “Fine” at our house means happy and stable, whether he’s in a wheelchair, a hospital bed or running around the backyard with no pants on.

3. All those chemicals and drugs can’t be good for him.

There seems to be a growing trend where completely sane and rational people, without a chemistry degree in sight, all of a sudden become experts on the chemicals in our daily lives. My son wouldn’t be alive today without plastics, drugs or vaccines. Please don’t be offended if you catch me rolling my eyes during most conversations about the avoidance of preservatives, food coloring, GMOs, sunscreen or Kraft dinners.

I once saw a person wrinkle her nose when I said we were giving Branko morphine as part of his pain-management plan. He had just had major orthopedic surgery on both legs, in which the bones were literally ripped apart and put in again with metal rods.

“Should you be giving morphine to a child so young?” she asked.

All of a sudden, I was frightened of “Big Bad Morphine.” I second-guessed myself at first, but my gut said stick to the plan. Turns out, doctors usually know what they’re doing. Morphine worked wonders for Branko, getting him through the initial, more painful period, and allowing his bones to heal.

4. It sounds like he’s been misdiagnosed. He should try going to (fill in the blank) hospital.

Uh-oh. Wait. Not only is this very confusing information, coming from someone who isn’t a doctor, but it also makes me nervous. Have I been doing everything wrong? Should I drive six hours to that other children’s hospital? Are there other surgeons with more experience who I should be seeking out? Why do I suck at being a hospital mom?

This advice came to me from another mom of a boy with a genetic disease. She felt strongly that Branko was misdiagnosed and had the same thing as her son.

Perhaps she felt we might have a stronger connection if our kids had the same thing. She had a negative experience at our hospital and felt a need to sway people from it. Some would definitely find her advice helpful; I found it a bit sad. We had a chance to bond over our shared experiences, to be special-needs-mom allies, partners in crime. But it didn’t turn out that way.

Over the years, I’ve become more savvy at deflecting medical advice from non-doctors. My secret: I kindly say “no thank you” followed by “I get all my medical advice from Dr. House and Dr. Grey.” That usually does the trick.

Jennifer Philp Zakic the mighty.1-001

789
789
TOPICS
,
JOIN THE CONVERSATION

This Woman Is Empowering Kids With Special Needs With Superhero Capes

1k
1k

In August 2012, Robyn Rosenberger thought it would be fun to sew a superhero cape for her nephew for his birthday. She’d never made a cape before and it was her first sewing project, but she enjoyed it and continued to make capes for her son, her dog and her friends’ children that same year.

During this time, she was following the site Blessed by Brenna, a blog about a young girl around her son’s age who was born with a severe skin disorder called harlequin ichthyosis. Rosenberger was reading Brenna’s story on her phone while rocking her son to sleep one night when she had an “aha” moment.

“Brenna needed a cape,” Rosenberger told The Mighty in an email. “My son looked super cute in one, but Brenna needed one.”

Rosenberger sent Super Brenna a custom-made cape in January 2013. With that, TinySuperheroes, a small business that sends homemade capes to children living with illnesses or disabilities, was born.

Oakley_Savikas-77

Rosenberger runs TinySuperheroes out of her home in Saint Louis, Missouri. The capes are custom-made, come in a variety of sizes and colors and each feature the child recipient’s first initial. Families can purchase a cape for their child or nominate a loved one to be placed on the TinySuperheroes waiting list. With every cape purchased, an additional cape goes to a child on the waiting list.

As of summer 2015, Rosenberger has sent more than 6,000 capes to kids all over the world. But, she says, she’s just getting started.

Rosenberger can recall the exact moment she realized TinySuperheroes was her calling. She received an email from a father whose son had passed away days after receiving his cape. He wanted her to know the impact it had on his son and on their family was so great they decided to have him buried in his cape.

“This is the hardest part of this journey, to know that some of our TinySuperheroes will not make it to kindergarten, or to their 16th birthdays,” Rosenberger told The Mighty. “But to know that I have the opportunity to provide something tangible that could provide a single ounce of joy to a family during the most difficult moment of their lives meant that I was in this for the long haul.”

IMG_6446

1455126_10202818073118768_1043903875_n

Rosenberger hopes TinySuperheroes helps the children feel empowered and proud of who they are. She wants families to feel bolstered and encouraged when they see their children wearing the capes.

But more than anything, Rosenberger hopes TinySuperheroes can change the way the world thinks about illness and disability in children.

“I hope that through superhero capes, we can train people to see their TinySuperPowers instead of their differences,” she told The Mighty.

1147104_514779501931985_1399905588_o 1377414_634645279891458_1542993027_n 10662198_10203987800473560_2886427188966607579_o

Super Tayen Gilbert GOOD

Learn more about the TinySuperheroes mission in the video below.

To learn more about this project or to order a cape for the tiny superhero in your life, visit the TinySuperheroes website.

Photos courtesy of Robyn Rosenberger.

1k
1k
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.