In honor of National Psoriasis Month, one of our Mom’s is sharing her family’s journey with diagnosis and management. Thank you Heather for sharing your beautiful insight!
When I heard psoriasis, I just had a general idea about a few itchy patches that really could be pretty irritating. But, in my mind, it was just a skin condition. I had no idea how a skin condition could become all-consuming – and how highly our culture valued outward appearance.
As a family, we drove to the Grand Canyon and when we returned, we noticed our son had a few itchy patches. We chalked it up to the dry weather on our trip, but as the summer progressed, so did the spots. The patches grew to cover almost all of his body from his scalp literally down to his feet. In just six weeks he’d gone from no spots to completely covered.
We saw our pediatrician for help and she gave us a tube of steroid cream and a referral for another dermatologist. Getting into most dermatologists is quite a feat these days as they’re booked out months in advance. Best we could do was 6 weeks out. We felt so helpless lathering him in steroid cream twice a day and seeing the psoriasis only grow worse. We were also getting concerned that he was at risk of an infection as the psoriasis patches had started cracking and bleeding in places. In Texas in the summer, we felt he couldn’t swim in the rivers or run barefoot at the beach for risk of a bacterial infection, so we stayed close to home. We’d also started a gluten free diet – anything to help! Our son started voluntarily wearing pants and long-sleeved shirts (in Houston – in August!) just to keep people from asking what was wrong. We were feeling pretty discouraged – and still desperately wanting to help our son.
By the grace of God, we got a referral to a pediatric dermatologist who’d had a cancellation and could see our son. She acknowledged that the steroid cream was pretty much like spitting into the wind when it’s as extensive as it was – and how aggressively it had spread. She also helped us understand it was an immune system response – and changing environments or diets may contribute to the irritation, they weren’t the source of the psoriasis.
She prescribed medicine that would calm his immune system and helped us understand the pros/cons of the treatment – then we watched and waited. So many well-meaning friends had lamented all the negative effects from steroid creams when they asked about his obvious skin problems. I learned enough that I was wise with the people I discussed his medicines – just learning to say to most folks “we have been blessed with a wonderful dermatologist with a lot of experience and a treatment plan.” I know they meant well, they just weren’t walking in our shoes.
When school started, we did our best to keep him comfortable in his uniform with the navy shirt that showed every bit of the scaling from the psoriasis. All the sweet, curious kindergartners would circle round him on the playground and ask about his “spots.” His teacher was wonderful, letting me come clean out the scales in his desk when I was at school. We were genuinely surprised by how many of the students showed empathy and kindness to him and laughed and prayed with him over his spots.
We also started attending family events through A Children’s House for the Soul. We thought it would help our 9-year old be with kids who encountered similar struggles. What we quickly learned was that we were all impacted. We met children and families who’ve encountered lifelong issues related to skin disease – and they quickly became some of the most courageous people we knew. Our teenage daughter started talking about how much she hadn’t realized how much of her impression of others came with just a first glance – and how important it was to make that glance positive. Don’t look away – look in and smile. Our pre-teen son noticed how much he admired people who’d overcome obstacles, not just the ones who came by life with natural talent and luck.
Our youngest still has psoriasis, and we’re very grateful it’s become manageable with the medicine being quite effective. This medicine isn’t a great long-term solution so we’ll be weaning off soon – and we’ll watch and wait to see what’s next
He still gets questions about his spots and is still hesitant to go shirtless at the pool – but our family become so much more understanding of how life is a struggle for many people in our imperfect world. Kindness and connections are huge. Connecting to doctors and specialists is always a top priority, of course – as they bring clarity through their diagnostic skills and knowledge of treatment options. But connecting with other families and children who are struggling has been life-giving and given us joy along the path – even when there’s not a “cure”.
Beauty really is more than skin-deep, just takes a little more time and a different kind of soul to see it.
Getting your child to comply with wet wraps can feel like can be a battle! Which if you think about it, is a little ironic, because by administering wet wraps you are helping your child’s suit of armor, their skin defends itself against the outside world! So let us talk strategy, determine some “weapons” for your arsenal, and let’s realign so that you and your child can go from enemies to allies.
When we feel overwhelmed or stressed, it can be tempting to tell ourselves (or each other!) Just relax, calm down! When we are stressed or freaking out, that is easier said than done. That’s why preparing a “coping tool kit,” a set of strategies for dealing with stress can be really powerful.
Do you freak out when you break out? I know I have! It is natural when we have a break-out to look in the mirror and think things like “These pimples are gross!” “I hate my skin!” “Things are never going to get any better!” Even though it is natural we think this way, it is harmful too.
Stop picking, popping, poking your pimples!
I know, it’s sort of like eating the whole bag of potato chips…we all know we aren’t supposed to do it, and yet, the temptation is SO STRONG! So…how do you stop?
Start with choosing an alternative activity!
We had so much fun at our first annual Heart + Sole Walk and Back To School Family festival! We want to thank all of our sponsors and everyone who came out to support our mission to make the world a more kind and understanding place for those with skin conditions.
As a Child Life Specialist working with teens and kids who have special skin, there is one question I get A LOT. “How do I talk to my teenager, when they tell me they don’t like how they look?” Parents are so worried that they will say the “wrong thing.” And truthfully, I have spent …
We had an amazing time celebrating the launch of our brand new SKIN DISCOVERY BOXES, a very special collaboration with our friends at CeraVe! CeraVe’s tireless pursuit of therapeutic skincare for all is truly more than skin deep and we couldn’t be more thankful. We celebrated in style thanks to our friends at Star Cinema …
A Children’s House for the Soul believes that it takes a village to support a child and family impacted by skin disease and birthmarks and that we are all better together.
Open House and Ribbon Cutting/Bring A Children’s House Home: On June 5th we began a very exciting new chapter of our A Children’s House story in the form of opening up our new beautiful space to serve children and teenagers with skin conditions and birthmarks and their families. This space includes a salon, a library & craft space, a teen room, and more! We also debuted our incredible new custom mural from up and coming local artist Eli Pallaert.
Our Family Trivia night was oh so much fun, and a huge success! We had so much fun getting to reconnect with all our friends and enjoy some laughs while snacking out on pizza and snowcones!
In honor of Vascular Birthmark Awareness Month, our childlife specialist Lindsay O’Sullivan had a great conversation with Jose about growing up with his special masterpiece skin!
In this interview, Ally shares about her experiences growing up with Ichthyosis. Ally shares how: Meeting other kids with special skin can help kids to feel less isolated and give them a very special sense of comradery and understanding. Parents don’t have to do everything perfectly to be the perfect parent for their child and …
What a wonderful time to relax, enjoy friendly company, and share their hearts on being a mama to a kiddo or teen with special skin. It was truly so special! These mamas were made a masterpiece!
Vascular birthmarks are very common in children. These birthmarks are made of blood vessels in the skin and can occur anywhere on the body. They may be pink or red in color, blue or purplish, flat or raised. Since they are vascular, sometimes they will feel warm to touch and may change in color with …
We have some exciting updates about our Capital Campaign! Learn about our short and long term plans for our own space.
You Can’t Teach What Has No History “This is how much God loved the world: He gave his Son, his one and only Son. And this is why: so that no one need be destroyed; by believing in him, anyone can have a whole and lasting life. God didn’t go to all the trouble of …
In honor of Ectodermal Dysplasia Awareness month in February, we sat down with two of our dearest friends Zach and his mama Susan! Zach is an avid golfer, an Aggie, and is affected by Ectodermal Dysplasia. Susan and Zach teach us about ED and the importance of finding community. They also had helpful tips and …
Join us for a fun and inspiring interview with this incredible lady Ana Maria! Ana Maria Triana is 15 years old and the author of How to Conquer Alopecia Universalis. Ana Maria gives heartfelt advice, shares wisdom beyond her years, and will leave you feeling full of compassion and confidence. A Children’s House for the …
In honor of the upcoming National Epidermolysis Bullosa (EB) Awareness week, we wanted to share this great piece from our friend, Rachael Wrobel about how her mama mothered her well, even despite the challenges of EB.
I am fortunate enough to be Mama to three little girls. Shortly after my eldest daughter’s first birthday (about 4 years ago) I noticed her hair was thinning. I was told by many it was just typical baby hair loss until it just couldn’t be described at “typical” any longer.