We have had so much help in figuring out what is best for Brenna’s skin care – from our dermatologist, from other families affected by Harlequin Ichthyosis, and from trial and error. First and foremost, I encourage you to talk to your dermatologist about everything that you’d like to try or implement in your/your child’s skin care or health care routine. And secondly, I compiled this list of what we use on a daily basis to hopefully serve as a resource to those of you who are affected by ichthyosis or other skin conditions/issues…I hope it is helpful to you! For more information on ichthyosis and skin care, check out the Foundation for Ichthyosis and Related Skin Types (FIRST).
Beiersdorf, the parent company of Aquaphor, has a donation program for those with chronic skin conditions, which is an enormous help financially. (We whole-heartedly thank Beiersdorf for this generous support!) Although we receive a certain amount of jars of Aquaphor Healing Ointment quarterly from Beiersdorf, we have to supplement on our own because Brenna uses so much. I can’t sing the praises of Aquaphor enough – not only does it keep Brenna’s severely dry skin comfortable and moist, but I’ve heard from so many families who use it for dry skin in general to diaper rash to treating skin conditions likes ichthyosis, EB, eczema and others. Additionally, when Brenna was three years old, we began putting coconut oil on her scalp and hair several times a day instead of Aquaphor, and we have been thrilled with the result – her hair is soft and not as tangled, and we can remove the extra skin from her scalp more easily.
We use medical gloves to apply Aqupahor, so that we don’t spread germs or contaminate the Aquaphor. In Brenna’s bath, we generally use Aquaphor-brand baby wash, and every so often, we will use colloidal oatmeal to relieve itch and/or bleach to fight off unwanted bacteria on her skin. As for diapers, Pampers have always been our favorite because they are the softest and hold up the best against Aquaphor. We make our own wipes using this recipe.
Brenna’s bath time is a daily occurrence, lasting between 45-60 minutes. In 2014, we had a MicroSilk bathtub installed when we moved and built a new bathroom for Brenna. This tub has really changed our bath time routine, and we are huge proponents of MicroSilk tubs now, as it has tremendous benefits for Brenna’s skin.
In our experience, cotton is by far the best fabric for constant Aquaphor use and for allowing the skin to “breathe” and not overheat.
Our favorite brands of clothing for Brenna have included Carter’s, Babies R Us, and Just One You at Target. The Carter’s snap-up cotton coveralls were my favorite for the first few years because they can be put on and taken off quickly, which are easier for Aquaphor applications throughout the day (versus outfits that must be pulled over her head, for instance.)
Now that Brenna is four years old, our go-to stores are Carter’s, Kohl’s and The Children’s Place. Since Aquaphor renders elastic useless, the yoga pants from The Children’s Place have been perfect for her. At night, Brenna wears cotton footie PJs that zip up, from Carter’s and the The Children’s Place.
Our favorite shoes for Brenna are from See Kai Run – they are comfortable, affordable and one of the first shoes that truly fit her wide feet.
When it comes to being outdoors, our favorite swimwear is from SwimZip. They provide so much coverage and because the suits zip up, it doesn’t hurt Brenna’s skin to pull it over her head. (We also got a SwimZip suit for Connor because we like that aspect so much!)
When the weather is too hot, we have some “tools” we use to keep Brenna cooled off. The most effective and most used is her cooling vest, which has packs in it that keep her core body at a safe temperature. We also use a spray fan and a Frogg Togg cooling towel.
The constant use of Aquaphor is not friendly to clothes and our washing machine.
For Brenna’s laundry, I pre-soak the clothes in a tub of hot water with a scoop of OxiClean Stain Remover, which helps break up the Aquaphor. I wash her clothes in hot water with Dreft Laundry Detergent (though I’ll use any detergent free of perfumes and dyes) and I pour in Stanley Original Degreaser, which works wonders! After the load is done, I scrub inside the washer and run an empty full load with hot water and Dawn dish soap to remove the excess build-up.