Working with Your Child on Choosing a Treatment

Imagine this, one morning you wake up and find unidentifiable red inflamed lesions all over the body of your 9-month-old baby. For most parents, this scenario sounds like something nightmares are made of but this was a reality for Shayla Knight, mother of Melanie Knight, who first encountered psoriasis as an infant and was later diagnosed at 2 years old, "I didn't really know anything about psoriasis. I really had no idea what we were getting into or what we were facing," shares Shayla during a phone interview. When encountering psoriasis for the first time the unknown can be scary.

Children come into this world without a voice, it is the parent's responsibility to help their kids to find the voice inside. Initially, Melanie could only express her discomfort through endless cries, but now at 17 she has a lot more to say about the frustrations with her disease, "I hate how it flakes and it hurts," reveals Melanie.

Melanie recalls the uncomfortable moments of having to share her disease with strangers, "For me the hardest part about having psoriasis is having to explain it to people because I had spots on my face and about 80% body coverage." We can't be with our children 24-7, therefore we have to work to prepare them to defend and advocate for themselves when they are on their own.

Expect a trial and error process with picking the right treatment

For Melanie's parents, another difficult task was choosing what treatment would be best for her. There is lots of controversy about treatments for adolescents. There aren't many options available for kids as there are for adults, this difference gives kids a unique challenge in finding the right treatment. Shayla states, in the beginning, they tried ointments, oatmeal baths, light treatment, and other natural treatments, "We started out with topicals. When she was really little, we were pretty hesitant to put anything on her, since she was so young and was still growing. We didn't want to cause stretch marks or scarring." Trying multiple treatments is normal and a part of the process when living with psoriasis.

Unfortunately for Melanie there was little relief with these methods but she has encountered remission, "Which was really nice, but then psoriasis came back,"  shares Shayla. Followed by the joint pain, "The arthritis progress and that's when we had to move on to stronger medications."

Is your child happy with their current treatment?

It's important to speak with your child on how they feel about their disease and current treatment, Melanie recalls a time when she was using a treatment with side effects she was not happy about, "I remember when I was younger and they had me on the topical steroids, I didn't like how they made my skin really bright red. It was really embarrassing for me to go to school after putting on the steroids because it made my skin really inflamed." Melanie also shares the embarrassment of having an at home light box which was stored in the laundry room of their home, eventually, Melanie asked her parents if she could discontinue phototherapy.

The challenges of a chronic illness and attending school

Some of the medicines made Melanie sick to the point where she had to miss school, but Melanie advises her parents are always understanding of her condition and the need to miss class for self-care if absolutely necessary. Now, she is on a biologic which targets the skin along with the joint pain and it seems to be working well.

Remaining hopeful

Melanie shares fears of her medicines failing or her running out of options as a teenager living with psoriasis, "it's frustrating for me because it feels like I'm reaching the end, like getting closer and closer to the end of the list for available treatments. It's kind of scary because then I don't know what I'm  going to do." However, during the conversation, Melanie reminds herself there is hope, "Medicine is always evolving and growing, so there will always be another treatment option."

The National Psoriasis Foundation has a new online platform called Our Spot which is dedicated to helping parents and kids manage the effects of psoriasis emotionally, mentally, and physically. They also have a welcome kit for newcomers which contains tools to help you navigate this journey with psoriasis.