“Stressful. Enlightening. Empowering.” Those are the words Amy Weiner uses to describe her journey as the parent of a child who has a chronic condition.
Amy’s son Shane, now 16, could barely talk when he came face-to-face with adversity for the first time. “He was just a baby, he wasn’t even two years old,” says Amy. I would say in a course of three days all of his fingers started getting swollen, very fiery looking, and very inflamed.”
The mother of three didn’t waste time searching for answers. She immediately took Shane to a pediatrician. The doctor said he didn’t know what it was and referred them to a dermatologist. From there, Amy went on to experience what seemed like an episode of “Mystery Diagnoses.”
She was first told that the symptoms her son was experiencing could have been due to a nail fungus or an infection. Amy wasn’t at peace with those answers, so she started doing her own research, “I looked at pictures, read medical journals, and went to the library.
The answer woke her up at 2 am one morning. “I know exactly what Shane has, she told her husband. “He has psoriatic arthritis.” Following this epiphany, she took Shane to four different rheumatologists, all of whom told her she was wrong because only adults get psoriatic arthritis. But due to the fact that Amy’s husband has psoriasis and her brother has psoriatic arthritis, she refused to take no as an answer.
Amy took Shane to his fifth rheumatologist, Barbara Anne Eberhard, M.D., who confirmed that Shane was in fact living with psoriatic arthritis. This appointment was followed by a meeting with dermatologist Neil Brody, M.D., who confirmed Dr. Eberhard’s diagnosis.
At the time of Shane’s diagnosis, there weren’t many treatments on the market approved for children. Due to the severity and progression of Shane’s disease, both his rheumatologist and dermatologist decided to give two-year-old Shane an off-label prescription for Enbrel, a biologic. "Dr. Brody told us that Shane was the youngest person ever to be put on a biologic” says his mother. For the last 13 years, the drug has kept Shane’s psoriatic disease in check with the help of methotrexate.
There is a lot of debate and opinion in the psoriasis community about the safety of biologics, especially for adolescents. Amy says she decided to be proactive about putting put her son on a biologic. She admits that at times she struggled with the decision but thinks about his future.
“When Shane is 20 would he hate us for not putting him on it, having possibly an arthritic condition that can’t be reversed or will he hate us for putting him on it? But I feel like if there is something possible to help, you need to try it.
Shane has his whole life in front of him and I never wanted to feel like I didn’t take advantage of something that could maximize it.” Amy also reveals she felt comfortable with the decision because Enbrel is a biologic has been on the market for a long time and over the years has proven to be safe. Fortunately, Shane has had no side effects.
Enbrel was approved for pediatric psoriasis in 2016, followed by Stelara, which was recently approved for kids 12 and older. Amy believes her son’s journey is what paved the way. “The reason why I have fought for it so strongly, is if another child comes along with the same thing the that another child has been on it that they don’t have to fight the way we did.”
For other parents on the same journey Amy shares some valuable advice: “You cannot give up. If you have that gut feeling you have to follow it and you cannot always rely on that outside source. You have to investigate something until exhaustion.”
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