What is your first course of treatment in managing your child’s flares?
Garland Doyle: We use a whole lot of moisturizer in this house. The first course of treatment has changed over the years; it used to be steroids, but now he’s on the Aron Regimen, so we try moisturizer and A.R. on the affected area before calling the dermatologist.
Les Korsos: Our first course of action is getting Ella into a shower, which gives her instant relief. After her shower, we put on her topicals and medication and pray and hope it’s a short term flare up.
Jed Cutaran: For us, our first line of defense is to manage the triggers. So finding out the real triggers was step one. Second, if a flare gets really bad, we are fortunate to be able to spot-treat with a small amount of cream from the Aron Regimen. This has been a life-saver for us and has allowed our child to thrive, grow and experience as many life experiences as we will allow him to.
What do you wish more parents knew about raising children with eczema?
Craig Jenkins: You might get a lot of bad information until you find something that works, but you have to keep trying!
Jed Cutaran: This one is kind of tough. Something I always hear when discussing my child’s eczema is the thought that eczema “isn’t that bad” or it will just “go away.” I always have to explain to people that it’s more than just a rash and that many people have infections and other side effects. It is NOT just a rash and I am not overreacting!
What do you wish more children knew about eczema?
Les Korsos: My wish for all children is for them to know how many people care about them.
Garland Doyle: I wish more children knew that eczema is a really big disease for a kid (or anyone for that matter). I wish they knew it’s not just “so easy” to stop scratching, and most importantly it is not contagious. You cannot catch eczema by being around someone and it really hurts a child when you say negative or mean things about their skin.
Craig Jenkins: There’s help out there for them. Don’t feel bad about yourself: there is nothing wrong with you because of eczema.
Jed Cutaran: For the children, I wish they knew they’re not alone and there are many other kids just like them, going through the same battles. It’s amazing to see the kids at NEA Expo or other eczema events where they get to be around children just like them without the scrutiny and pressure. I want children to know that they ARE normal and there is nothing “wrong” with them. Much like others, they just have their own battle to manage and that they have the full support of their family!
What is your superpower as a caregiver for a child with eczema?
Craig Jenkins: Mindreader! Knowing my daughter’s specific signs and what to look for before she flares.
Les Korsos: My wife, Amy, and my daughter, Ella, have all the superpowers in our family, but when Ella was younger I was a superstar and rocked her to sleep on my shoulder during some of her toughest nights. I wouldn’t call myself an eczema “whisperer,” but I was able to get Ella down when she really needed help.
Jed: Superpower? This is tough because I’m just doing what any parent should and would do for their child. We brought them into this world and it’s our duty to protect and care for them no matter what, right?
But if I had to say a specific power, I would have to say it’s something that could be either good or bad. I have the ability to block emotions and just do what needs to be done. What I mean is that sometimes I can avoid panicking until I have more information. That sometimes allows me to make clearer decisions or ask more questions, instead of just jumping into something. That said, sometimes I miss some emotional cues and realize I need a bit more compassion. That’s where my wife Christine kicks in and takes control. It’s a pretty good superhero/sidekick relationship, though honestly I am probably the sidekick.
Garland Doyle: This was a challenging question for me because I often feel powerless against my son’s eczema. I hope that if I get asked this question again in a few years, I will be able to say it’s my “Eczema Eraser,” but for now that doesn’t exist, so I have to make do with the tools I have: knowledge, humor, love, care and commitment. I laugh a lot with him, and I remind him that he is more powerful than his eczema!
What does your child do to make you laugh together? Any favorite jokes or games?
Garland Doyle: Bryson does impersonations of us, and his most hilarious impersonation is of me. I get “pretend mad” at him, but I would have to say that he is pretty spot on.
Craig Jenkins: What does she NOT do?! We love to prank each other and do knock, knock jokes!
Les Korsos: Ella is a child who was born to smile and laugh. We also play a paddle ball game in the yard that she’s become quite good at. It’s great for her hand-eye coordination, and I love watching her competitive spirit.
Jed Cutaran: My child is so smart and is a total information sponge. Now that he’s older, I really have to watch what I say, or how I let my emotions out, because next thing I know: my kid is jokingly mocking me. Sometimes he does it to the point where I get so mad that I have to laugh. At one point, I was so scared of losing this kid when his eczema landed him in the hospital, and now he is driving me nuts with his hilarious jokes about me. But I would take his jokes and laughs all day, everyday as opposed to crying and pain.
What do you wish more healthcare providers knew about raising children with eczema?
Craig Jenkins: I wish more people knew how to properly treat all different types of eczema and different skin types: white skin vs brown skin, et cetera. And I wish providers would prescribe what each specific child needs and not just the latest new trending medicine, because eczema is different for every kid.
Les Korsos: First, I believe most people in healthcare and healthcare providers are amazing. It takes some time, but the team Ella has is a blessing to our family. As a family, you have so many factors you face during this journey with eczema. Finding the right formula for your child to have comfort and not be in pain is the first part of the process. I wish providers took a bigger dive into the emotional and financial side that takes a toll on the entire family.
Jed Cutaran: I honestly wish most doctors had better compassion and understanding for their patients, especially dermatologists. I get it: you get desensitized, seeing conditions every day. But put yourself in our shoes where you only talk to us for three minutes and just say “apply this cream and come back next month.” When something doesn’t work, please realize that we are the ones doing the sleepless nights, applying medications or therapies for our loved ones, while watching them suffer. So a little more understanding and compassion would be nice.
Additionally, if you, as a parent, have tried everything and it hasn’t worked (or made things worse), I would ask for dermatologists to be more supportive when parents want to explore other treatments. Nothing progresses in science without trying new ideas and new things. Just because something isn’t in a textbook (yet) doesn’t mean it’s not worth exploring. Who knows? You might just be part of the catalyst that sparks the change for new treatment or research.
Garland Doyle: I wish more healthcare providers knew a lot more about eczema in general. I wish they were more open to acquiring new knowledge and free to admit that many of the old ways of treating eczema have not worked. I wish they knew how tremendously tough and heartbreaking it is when you can’t help your child feel better.
As a parent of a child with eczema, I have felt despair and hopelessness, and this is sometimes compounded by healthcare professionals who do not see my child as an individual, but just another eczema patient. I want them to see my child, the way I see my child: a young person wanting to sleep, wanting to feel better, wanting not to be a burden, wanting to fit in, wanting to have hope and not having to struggle through pain and insults and blame over something that is clearly not his fault. I want healthcare providers to really see and have the desire to erase my child’s eczema and not just create another revenue stream. Raising a child with eczema is hard and mentally draining, and eczema patients, parents and families still have the right to believe, even to expect, that one day they can and will get better.
What is the best thing about being a parent?
Jed Cutaran: That’s easy. Getting to see my little minions grow and to see the love in their eyes every single day. To know I am their father and have them constantly remind me is a true blessing! The absolute best.
Craig Jenkins: Just seeing her grow up! I love seeing her personality develop. And having a mini version of myself is pretty great too.
Garland Doyle: The best thing about being a parent is spending time with my child and watching him overcome obstacles and flourish in spite of his eczema. I am proud to watch him grow and develop into a young man.
Les Korsos: It’s so hard to choose just one thing, but I truly love being a dad. Seeing the girls learn new things and watching them become their own person is the best thing about being a parent. The best feeling in the world is when you walk through the door after a long day of work, and your kids are sprinting to give you a hug yelling: “Daddy, daddy, daddy!”
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