The NEA research team has published its latest paper on the out-of-pocket (OOP) costs of atopic dermatitis (AD) in the U.S. — this time examining OOP costs among caregivers of children with AD compared to adults.
Published On: Jul 25, 2016
Last Updated On: Jul 15, 2021
Andrew is 15 years old and lives on the East Coast. His eczema began when he was a baby. In terms of family history, Andrew’s father has seasonal allergies and had eczema while in high school. Andrew started the Eczema Boot Camp regimen this past November. Andrew’s mother, Cherie, answers questions about their experiences with the eczema boot camp methods.
Andrew has had extremely bad eczema since birth. We have tried everything. We have had four or more dermatologists throughout this adventure. I call it an adventure because it has not been an easy road. Andrew has been on all kinds of topical steroids, oral steroids, and other treatments—and nothing has helped.
He has been in and out of hospitals and has tried antibiotic after antibiotic.at a certain point Andrew started to fall into a depression and was withdrawing from friends and his favorite activities. He had to stop playing basketball because he couldn’t stop scratching when he started to sweat and he could not bend his legs because they were too raw. His teammates and classmates also looked at him like he had a contagious disease.
After 14 years of tests, medicines, and doctor appointments we had some gene testing done, and Andrew was diagnosed with Hyper Ige Syndrome, or Job disease. Part of this disease involves super infections of the skin and eczema.
When we got the diagnosis, I could finally smile: I was not the crazy, neurotic mom. My son had real symptoms and we now had a real name for his disease. Andrew was eventually admitted to Boston Children’s Hospital for a super Staph infection that had been covering his whole body for quite a while (for months).
We were introduced to Dr. Sheilagh Maguiness from Dermatology, and she explained what she calls the eczema boot camp regimen. I cried … but I needed to get help for Andrew. He had already missed 34 days of high school during his freshman year due to his skin infections. Andrew had had enough of being like this. We discussed our options and chose the eczema boot Camp option.
When Dr. Maguiness explained what we would be doing, I cried and felt like I had failed. Andrew held my hand and said, “mom, it’s all good. Let’s do it!” We stayed in the hospital for 14 days to do extensive therapy on his skin, and then we went home to keep up the skin regimen.
The plan was for Andrew to soak in bleach baths for 15 to 20 minutes, apply topical steroids and Hydrolatum quickly, and then put on wet pajamas covered by dry pajamas. He was also going to take six pills a day and be on IV fluid. When we heard this, I was very skeptical about this working: Andrew is 15 years old and we’re going to put wet jammies on him? I thought this plan was crazy! I had no faith as nothing had worked up until this point. Dr. Maguiness asked me to
put any faith I had left into her and her team and said she would help Andrew get better—physically and mentally.
While in the hospital, Andrew had my undivided attention to do this regimen: no work, no school, no house to care for, no other responsibilities. I was 200 miles away from my husband and daughter, and Andrew was missing our family too. I was determined to help Andrew get to a “happy place” with his skin. I wanted Andrew to understand his disease, and learn how to deal with it.
We started to see results within three days. Andrew’s skin had been raw and open. The bleach baths started to heal these open sores, and his red skin turned pink. I could not believe what I was seeing, but I started to have faith.I could see Andrew staring at his arms and touching his legs. He was feeling so great! I was getting my son back!
I just kept staring at him and feeling his skin; it was soft and the sores were almost gone. The nurses had to keep coming in daily to see how Andrew was doing, and they too could not believe his skin. Even Dr. Maguiness could not believe the change in Andrew’s skin. After eight days in the hospital, Dr. Maguiness said we could go home and finish the regimen there. We went home, and initially had dermatology appointments every couple of weeks. We are at a point right now that we do not have to go back for six weeks! OMG! I have been floored; it really works.
The eczema boot Camp is worth every bit of energy you put into it. I will be the first to say that I really had my doubts. Andrew felt the same. He had resigned himself to thinking, “This is how I am always going to be.” Dr. Maguiness and the boot camp plan gave us back happiness, hope, and our family. I will be forever grateful to her and her team. Andrew has had some tough days since we have been home. He has his lazy days—and then we see a flare up. When that happens, though, he does hit the bath ASAP.
I’m not really sure how to answer “Is it worth it?” without sounding crazy. Our lives had been in total turmoil for 14 years. We had been to so many doctors and specialists. a day doesn’t go by that I wish my son had no problems, but my son has severe eczema, a disease that will never go away. I have a son who has good days and a lot of bad days, and he will be on medicines for the rest of his life. I have a son who is learning to be his own “normal.” although eczema boot camp is a long process and very time consuming, I am so happy we did it.