Parents of asthmatic children

and

I have three (now adult) children with asthma. I also have asthma. Sigh.

Asthma has literally changed our lives (and my career). I went back to college to get a degree in Public Health so I could switch careers and help those with asthma. My two youngest children were in the hospital 12 times (2 of those were ICU stays). I have my fair share of Urgent Care visits for pneumonia and influenza.

To answer your questions from my experience:
1. What is most difficult for your children about their condition, both physically and mentally?
* My kids were discouraged when they couldn't go camping, horse back riding, or do other activities. Some sports were harder for them than others. I had one coach that yelled at my son during a soccer match and said, "When I tell you to run - you better run!" I pulled the coach aside and said my son has asthma.....if he isn't running as fast as other kids, it's probably because he's having a hard time breathing.
* My daughter was on her high school track & cross country teams. She would have to miss after school runs due to wildfire smoke. She would tell her coach she would go to our local rec center and run laps there instead.
* One thing that is interesting is that the most common chronic disease among Olympic athletes is asthma. So if they can complete at that level, we can be active and exercise too!
* Here's an article I wrote about Olympic athletes with asthma: https://asthma.net/living/olympic-athletes-triggers


2. Is it the visits and stays in the hospital?
* My kids missed a LOT of school due to asthma. When my son was in high school, he exceed the "allotted number of missed school days". His asthma specialist had to send a letter to the high school and school district and let them know that my son has severe asthma, has been hospitalized repeatedly, and would continue to miss the allotted number of missed school days.
* My kids were at Asthma Doc's office twice a week for allergy shots (which helped control their asthma). And once a month for Xolair injections.
* They were in the hospital 12 times. Staying in a hospital bed gets really old, really fast. Our hospital had a wonderful Child Life Specialist that knew my kids (sadly)...She would give them blankets, games, and try to help them anyway she could during their hospital stays.
* During one hospitalization, my son and daughter shared a hospital room when they both had pneumonia
* My husband and I would take shifts at the hospital, so our kids were NEVER alone.
* When friends would ask what they could do to help, I would tell them. I would ask them to run carpool for me, tell them I was craving homemade chocolate chip cookies, etc. People want to help, be honest and tell them what you need.
* Remember, that just because your child is discharged from the hospital does not mean that they can go back to school the next day. My kids would also need to stay home for a week after their hospitalization to get their strength back. They were often discharged on oxygen, so we would have to wait until they were weaned off and go back to school.
* We were Germaphobes long before COVID hit! We are handwashing freaks, avoid sick people, and leave church or the movie theater is someone near us is obviously sick. (We seriously can't afford any more hospitalizations...)


3. Is it the fact that they don't quite understand how their condition works?
* Asthma Doc trained my kids about signs and symptoms of asthma, so my kids knew what to watch for. They would tell me if they were having symptoms. They were pros at having proper inhaler technique, and could give themselves breathing treatments.
* School could be awkward because no kid wants to "be different" and get bullied. At the beginning of every school year, I would meet with their teachers, explain their medical history, and set up a special sign my kids could give to the teacher if they needed to leave to use their inhaler (swing their lanyard back and forth, point at their chest, etc.). The teacher would nod and my kids would dash out with their backpack to the closest bathroom for privacy to use their inhaler.

4. Is it the fact of being limited in certain aspects compared to the rest of healthy children in this sense?
* Experts say that asthma should not limit kids and they should be able to do anything they want to. But - asthma triggers are everywhere at school (animal pollen on other kid's clothes, strong cleaning supplies, mold, dust, gym class, exhaust from idling school buses and cars, etc). My kids could usually handle any asthma attack at school, but sometimes I would have to come pick them up.
* My kids were always sicker than their classmates, and their respiratory illness would last longer than other kids. That's common with asthma.

5. Is it anything else?
My area of interest is helping other parents of kids with asthma. I make sure that anything I share is accurate and evidence based. I am Certified in Public Health and am also a nationally Certified Asthma Educator.
If you want to follow my blog or socials (in addition to asthma.net), my handle is My Life as an Asthma Mom http://asthmamomlife.blogspot.com/


Parenting is much harder when you have kids with chronic diseases. Just focus on one day at time. Eat chocolate. See a counselor - whatever helps you.

And take care of yourself, because no one else will. If I am sick or burned out, I can't help my kids

Good luck!

Andrea CHES, AE-C
Certified Asthma Educator