It’s Never Just a Cold
I have shared many times in this column that I have three sons with Duchenne muscular dystrophy. People sometimes think I’m an expert on the subject. But the truth is that my boys are unique, and Duchenne has affected each of them differently. Their disease progression and weakening muscles have taken unique courses.
So, instead of making me an expert, my experience has made me acutely aware of Duchenne’s vastly different expressions. Every time I think I’ve figured it out, one of my sons will experience something new that neither brother has experienced. I’m not an expert, but I’m constantly learning.
A significant difference between my three sons with Duchenne is how they respond to illness. Max, my 15-year-old, and Charlie, my 10-year-old, both respond pretty typically to cold or flu symptoms, with just a slightly longer recovery time than the average kid. However, Rowen, my 12-year-old, gets very sick.
The stress on his body as he tries to fight infection completely exhausts him. Healing happens very slowly when his body is so tired. Upon hearing the slightest sniffle out of him, my husband and I go into keep-him-out-of-the-hospital mode. We immediately start to prepare for the worst-case scenario — that his cold will turn into a breathing problem, and he will have to go to the hospital.
We move his cough assist machine to the living room and begin diffusing certain essential oils that can help with respiratory illness in the rooms he frequents. We review care guidelines on the Parent Project Muscular Dystrophy website, and then we wait, because with Rowen, it’s never just a cold.
Once the sniffle worsens, causing him to feel unwell, we start a stress dose of his already prescribed steroid, under the advice and guidance of a doctor, of course. Our boys’ neuromuscular clinic has an endocrinology office that trains parents of children taking corticosteroids on how and when to stress dose.
Rowen will sometimes miss a week of school or more as we nurse him through a cold. He is on day six of a cold right now, thus prompting the idea for this column. Thanks to the weekend and a scheduled day off school, he has missed only four school days.
He might have missed more if the sniffles had started on a Sunday night instead of a Wednesday. We took him to the doctor today, and they started him on a “Z-Pak” (azithromycin) in addition to the stress dose of corticosteroids. So, we hope he is back in school soon and stays the heck out of the hospital.
Our fear that a cold will hospitalize Rowen is genuine. In January 2020, he started to feel much like he does this week. He had a sore throat, runny nose, and then a cough. At that point, we didn’t know how to stress dose at home, so he ended up in the hospital with influenza and pneumonia. Thank goodness it was only for about 24 hours, but it was still too much.
Not to mention that being on the autism spectrum makes unplanned hospitalizations and IV needles, which remained inserted for the duration of his hospital stay, unbearable for Rowen. In the future, we decided we would ask our doctor to only keep an IV in while administering meds. Rowen would rather have the needle put in repeatedly than keep it in his vein for any longer than necessary.
I’m not sure how my husband, Jason, feels, but I feel responsible, like we could’ve avoided the hospital entirely if I had a better grasp on what we should be doing for Rowen at home. But as I have learned and reminded myself often during our journey with Duchenne, you don’t know what you don’t know. I could write an entire column — a series of columns, actually — just by listing the things I didn’t know about caring for a child with Duchenne until they happened.
Although I feel responsible, looking back at that experience and at all the knowledge I gained, I’m glad I learned what I did. Duchenne is progressive, and we will experience more significant medical crises as we continue down this road. The experience gained is packed away in my caregiver’s brain, and it will be there the next time I need it.
Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.