Life is a roller coaster, so hold on tight! I’ve decided this is my new motto. Which is kind of funny because as a family we love thrill rides (especially roller coasters!), but emotional roller coasters are just no fun whatsoever. Dealing with life-threatening food allergies on a daily basis is a never ending emotional roller coaster. And add in flares of severe eczema and folliculitis, random asthma attacks, and a vision impairment that leaves us wondering if our boys will even be able to get a drivers licence, some days I just wish I could tell the roller coaster to stop for a minute and let me catch my breath!
Josh has been struggling with folliculitis (inflammation of hair follicles) for 5-6 years now. It mostly affects his arms and legs, but the sores can show up pretty much over his entire body. We’ve been to several allergists, dermatologists, and even a psychologist after one doctor suggested the itching sensation was all in Josh’s mind. Of course I knew that wasn’t the case and was quite angry that she even suggested it, but in the end we decided to see the psychologist just because we had no where else to turn. And here we are, still dealing with folliculitis. The more he scratches at the spots, the more his eczema then also flares since we all know that eczema is known as the “itch that rashes”. Josh has been tested for all sorts of diseases including celiac, had a skin biopsy done, and even had patch testing done which came up totally negative. Bleach baths do nothing for him. Wet wraps do nothing for him. Antibiotics do nothing for him. Topical steroids do nothing for him. Oral steroids do help temporarily, but then as soon as he stops the medication the folliculitis is back within a couple of days. For a while we had found what we thought was a miracle cure for the folliculitis. About a year ago we started rubbing his entire body down with a washcloth saturated with hydrogen peroxide, and the sores started healing and disappearing. It was amazing! But then for some reason, after several months of having clear skin, the folliculitis reared it’s ugly head again and the peroxide has no affect on it any longer. Why??? We are now trying an antifungal ointment on the spots, but I’m not seeing any improvement with it. I can’t help but wonder if this is something he will have to live with his entire life now. I’m so sad and embarrassed for him. He pretty much lives in long pants and a sweatshirt. I can only imagine what the boys at school think and say behind his back when he has to change in the locker room for gym class. My heart breaks at the thought of him not having a girlfriend throughout high school, because honestly I can’t imagine many teenage girls looking past all the sores covering his skin and seeing what an incredible young man he truly is. I wish and pray with all my heart that we could find a doctor who can treat this skin condition. The eczema is bad enough, but adding the folliculitis on top of that is unbearable. Some days I really hate roller coasters.