As my son with EB battles bacteria, I struggle with caregiver burnout

“Does he deal with depression?” my dad asked me the other day. I was explaining to him that Jonah, my 14-year-old son with epidermolysis bullosa (EB), had endured a rough couple of weeks.

“I don’t know,” I responded. “Depression seems more like when you can’t really figure out why you’re sad or feel so low. And he has very valid reasons for being down sometimes. He gets low,” I continued, “but he doesn’t typically get stuck there.”

Over the last year and a half, Jonah’s skin has gradually gotten much worse. I’ve tried all kinds of creams and ointments, to no avail. He’s always gotten blisters, but even where it wasn’t blistered, his skin was red, “rashy,” and what I call angry. He looked inflamed, and his fragility had greatly increased.

I tried Lotrimin (clotrimazole), nystatin, Bactroban (mupirocin), and every over-the-counter medicine I could think of to treat skin and fungal infections. Nothing. I figured it was likely hormonal.

Recommended Reading

January 19, 2023 Columns by Patrice Williams

Learning to Prioritize Self-care as a Special Needs Parent

I decided — much too late, I now realize — to take him to see a dermatologist in Chapel Hill, North Carolina, who has some EB experience. The dermatologist cultured several places on his legs. Although none of his wounds looked definitively infected, it turns out Jonah was battling a colonization of methicillin-resistant Staphylococcus aureus (MRSA) and pseudomonas aeruginosa.

I felt like a total failure when I found out. How long had he been dealing with these problems without me fighting to find out why? How could I have waited so long?

Even after 14 years, I’m still a newbie. On top of the bacterial skin infections, Jonah had come down with a bad cold and cough and felt completely miserable. After a week of coughing and fatigue, he then caught a four-day stomach bug. When he felt well enough to eat again, he developed two huge blisters in his mouth and still couldn’t eat. He couldn’t catch a break.

The dermatologist started him on an oral antibiotic and a topical steroid cream, and I hit the EB message boards. Some people recommended bleach baths (to kill the MRSA) alternated with vinegar baths (to kill the pseudomonas), so we tried it.

Jonah did fine with the bleach, but the vinegar, even diluted at 20 parts water to 1 part vinegar, was horrifically painful for him. So that was out. And the kicker of bleach baths? Bleach kills the good bacteria, too. So if we overdid it with the bleach, we’d kill the good stuff that was keeping the pseudomonas in check, and the pseudomonas would get out of control. It felt like we couldn’t win.

Jonah was down. And I was extremely down. Caregiver burnout is so real.

We have a nurse who helps out from 8 a.m. to 6 p.m. most weekdays, so much of the burden of Jonah’s care is removed from my shoulders on those days. But I’m still the one making and taking him to doctor appointments, checking MyChart for test results, facilitating communication between doctors, sending out photos of his skin, keeping in regular touch with his pediatrician, picking the brains of other EB moms, and most of all, thinking. Being a special needs mom and caregiver involves so much thinking.

The worrying is exhausting. The thinking, planning, and figuring out are enough to make a person crazy. I think maybe I did go crazy for a couple weeks. I wasn’t in a good place.

Someone with caring eyes would ask me how I was doing, and I’d just burst into tears. I’d wake up in the middle of the night, unable to get back to sleep. I gave up my typical clean eating and ate all the things, along with my feelings. I didn’t want to be around people. And I couldn’t name anything that would help. I was just bummed. And stuck. And then I felt guilty that maybe I was feeling more sorry for myself than I was for Jonah. What was wrong with me?

What we finally landed on was a monthlong regimen of doxycycline paired with bleach baths once a week, Vashe Wound Solution wash for “angry” areas, and the steroid ointment as needed. His skin has drastically improved. He’s over all the viruses, his mouth has healed, and he’s doing really well. At the moment.

It’s not uncommon for EB patients to deal with bacterial skin infections. And they’re a pain in the butt to get rid of. But things could be worse, and I’m so thankful for his signs of improvement. I’m thankful for our pediatrician, who fights for answers, and for his nurses, who ease the burden. But most of all, I’m thankful for my amazing, champion kid. It’s my honor, even when I get pouty and childish about it, to care for him.

Patrice and Jonah pose while out on a recent mom-son date night. (Photo by Patrice Williams)

Note: Epidermolysis Bullosa 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 other 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 Epidermolysis Bullosa News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.