For most people, skin irritation is nothing more than a temporary inconvenience, but for those with atopic dermatitis (AD), like 14-year-old Brandon*, it’s a lifelong affliction. Here Brandon and his mother Jessica* reflect on how far he has come and how important family support can be in managing AD.
*Names changed for privacy
The early years – a mother’s perspective
It all began with a rash on his face when Brandon was only 2 months old. Jessica recalls that it would come and go, but it got worse as Brandon got older, appearing most frequently in folds of skin such as the inside of his elbows and behind his knees. The itchy rash was sometimes so bad that Brandon would wake at night, crying.
“At first, we thought he was just being cranky, you know? Every time, we would need to comfort him and help him get back to sleep. Then it started happening every night without fail, so we decided to take him to a doctor who confirmed it was AD. Brandon was about one year old at the time.”
Brandon was prescribed corticosteroids but Jessica was concerned about its long-term use.
“I noticed that when we used it the symptoms would go away, but it would come back when we stopped. Sometimes it would be worse than the last flare-up so we decided to stop using steroids for a while.”
However, when treatment was stopped, Brandon’s skin condition got even worse. In addition, the chronic sleep interruptions affected Brandon’s growth, as Jessica noted he was smaller and thinner than other boys his age.
“When Brandon was 7 or 8 years old, we decided to see a dermatologist because he had a very severe flare-up. It was so bad that he had open wounds on his body, which triggered an infection, and he had to be admitted to the hospital for a week. This was a turning point for us because all the things we had tried in the past did not work. The dermatologist prescribed steroids again and this time we felt there was no choice,” she explained.
Naturally, Brandon has no memory of his early years with AD but he does remember that he had to avoid playing sports while in school because the sweat would trigger a flare-up, he says.
“It’s really hard to avoid scratching so it can help to distract myself by doing other things, but sometimes I just can’t stand it and I have to scratch! Some days are better than others, when the itching is not so bad and I can get a good night’s sleep. Other days it is just really annoying because I can’t do anything that will make me scratch, like having a pet,” explained Brandon.
Overall, it took 2 years before a consistent improvement could be seen. Now a 14-year-old, Brandon is an active adolescent who loves to play sports and knows how to manage AD effectively, with support from his family and dermatologist.
“I can manage flare-ups by applying the creams the doctor has given me, and to keep my room cool so that I don’t sweat so much. Basically, the most important thing I can do is not to scratch,” he said.
“Now that we have been dealing with this for so many years, I understand that treatment is not going to be very different. We have to resign ourselves to the fact that there is no cure, no easy fix and we just need to follow the treatment plan that the dermatologist has recommended so that you can break the cycle and keep it from happening so often,” said Jessica.
“Overall, I find that following the instructions from a dermatologist is more effective than listening to all the advice that is floating around online. You know how it is, everyone tells you different things and it can be very confusing, so I prefer to listen to the advice given by the dermatologist. After that incident where Brandon was admitted to the hospital, I know that AD can lead to complications like infection, so I would like to tell all parents who have a child with AD, to please see a dermatologist so they can get the appropriate treatment. This is because everyone’s case is different, and the treatment will also be different – only a dermatologist can advise you.”
It was through their dermatologist that they learned about a new biologic therapy that was suitable for patients like Brandon, with moderate or severe AD who have been unable to manage the condition well using conventional treatments. It works primarily by reducing inflammation in the skin which causes the symptoms of AD.
“The treatment is not a cure but it has really helped to improve Brandon’s condition. Now he is sleeping better at night and because of this he is able to concentrate in school and continue getting the exercise he needs as a growing boy,” she said.
With biologic therapy, patients can sometimes see improvement in as little as a month, though experts advise that it may take up to 12 months for the skin to recover and achieve its optimal state.
“In the past, AD has forced him to restrict his activities such as sports. He has had to wear long pants so that people won’t ask about the scars, and had to answer so many questions and deal with people offering all kinds of advice. With this treatment, we are more hopeful that Brandon can live his life with confidence.”