I have 5 essential tools for managing cold and flu season with Duchenne MD
Every time we get through an illness, I become more confident I can handle things
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When the germs of cold and flu season find their way into the Vertin household, they crash our party of nine, and no one is spared.
A cold or flu can be especially dangerous for my three sons with Duchenne muscular dystrophy (DMD) — Max, Rowen, and Charlie — because they have compromised immune systems following years of corticosteroid use, along with reduced lung function that has created a weakened cough.
But over the years, I have learned what I need to keep at home to help my sons cope with an illness and keep them out of the hospital.
Below are the things we keep at the ready.
A thermometer and fever-reducing medications
When Charlie, 15, woke up recently with a sore throat, the first thing I did was take his temperature.
He had a low-grade fever, so I immediately gave him Tylenol. My sons are miserable when they have a fever. But once we get that under control, they will be better at talking to me about their other symptoms, such as trouble breathing.
Stress-dosing
I also started stress-dosing Charlie. The body needs higher cortisol levels to maintain critical functions during stress, sickness, or injury, so I increase the dosage for all three boys with DMD when they are sick.
Having a stress-dosing plan for home and hospital settings is important for anyone using long-term, high doses of corticosteroids, such as deflazacort, which is what we use. We developed our plans with our neuromuscular team. A fever, a severe cold with fatigue, a viral or influenza infection, diarrhea, and vomiting are all things that would keep a child home from school, so I do recommend talking with a neuromuscular team about stress-dosing if a plan for at-home care is needed.
Cough assist machine
Charlie’s cough wasn’t terrible, but he needed his cough assist machine for some big coughs.
All three of our sons with DMD got a prescription for a cough assist machine around the time they were 11 or 12. We use it when they are healthy, but when they are sick, there is a second setting that can help clear the cough.
In the past, using our cough assist machines has prevented respiratory illnesses from requiring hospitalization. This time was no different.
When I took Charlie to the doctor, the influenza tests were negative, and we were told it was a virus. We went home and continued with fever-reducing medications, rest, and plenty of liquids, and after three days, he went back to school.
Despite my best efforts to clean and sterilize the house to keep the virus from spreading to anyone else, however, Rowen, 17, woke up in the middle of the night with a very high fever.
Rowen always gets the sickest, so when he was worse than Charlie, I just assumed the same virus was hitting him harder.
Pulse oximeter
We eventually got Rowen’s fever under control, but he still needed the cough assist machine several times a day. When I sat next to him, I could hear his breathing, and while it didn’t sound like he was struggling, I could tell he was working hard at it.
I checked his blood oxygen saturation level with a pulse oximeter. It was low, but not alarming. We continued to measure it through the night to make sure he hadn’t decreased, but it had fallen a little by the time I took him to the doctor the next day. Time to start using the nebulizer.
Nebulizer
We got a nebulizer for our son Chance, 18, who doesn’t have DMD. When he was little, he had asthma, which made any cold or ear infection a respiratory nightmare. We continue to keep a nebulizer on hand for use as needed. I was glad we had everything at home and could give Rowen a breathing treatment. After two treatments, his oxygen improved, and he said breathing felt normal again.
Every time my sons get sick, I panic a little. But each time we get through an illness, I feel a little more confident that I can handle one at home. I know there will be a day when I won’t, and they will need hospital-level care. But I am deeply grateful for all I have and for what I can do for my sons at home.
Note: Muscular Dystrophy News Today 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 Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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