Welcome to the massive post about Luca's skin debacle. Seriously, sit down, stay awhile. Make yourself a cup of coffee or tea. This is a mother of all posts about skin reactions, irritations, dryness, etc. And if you deal with skin issues for yourself or your child, you might even learn something that helps!
Luca has always had eczema. It all started when she was just a month or so old. She had horrific cradle cap and I may or may not have put olive oil on her head to try to help it. It did help, but very short-term. Then, she received her gift of life when she was just 4 months and skin worries went out the window because we had bigger problems, keeping Luca alive problems.
We would lather her up often but just thought that with the amount of poking and prodding and tape and tourniquets that her body was being exposed to, her skin was bound to have some issues. Lathering continued.
Then she stabilized medically (thank God) and she was not being poked and prodded and taped as often. But her skin was like sand paper. Literally, that is what it felt like. She scratched herself to the point of bleeding and yet would continue scratching. And not just in one area - areas covering the majority of her body. She would play with toys, and while playing, start scratching. Interrupt eating to scratch. She was miserable but just kept fighting through it.
We saw her pediatrician. Again. And again. We absolutely love our pediatrician and he kept working with us on trying to improve her symptoms. I got her transplant team on board and every time her transplant team looked at her, they would comment on how bad her skin was. "It must be allergies." "It must be from being immuno-suppressed." "It must be a skin irritation." They would all offer suggestions and we would jump to try something, anything to alleviate the discomfort.
We tried everything. We switched brands. We switched laundry detergents. We switched to everything unscented. We tried oatmeal baths. We tried natural products. We had her in with her doctor repeatedly. He would switch things up again. I felt like a mad scientist trying to find the right combination of products that would miraculously fix things.
Then a few months back we got the video monitor. I would sit, mesmerized, watching her sleep peacefully. Except I finally could see that at night while sleeping, she would be scratching herself. She would toss and turn, all while scratching herself. The primary areas where she had scratch marks and her skin was the worst - her butt and torso. And sure enough, in her sleep, she would keep her eyes closed and scratch. Poor thing was clearly uncomfortable and I had had it! I felt terrible for her - how very uncomfortable she must have been. ENOUGH I said.
I made an appointment with her transplant team, a regular follow-up, and explained my concerns about her skin. She has open spots on her skin where she has scratched so badly she bleeds, in her diaper area. Isn't this a concern since she is already more prone to infections? Well, that got their attention. They wanted her in with the dermatologist, stat!
Except I called the derm and they couldn't fit us in until June (I called them in January). Um, thanks but no thanks. I played the transplant card. I called her team and they touched base with the derm directly, at a different hospital.
Voila, they fit us in. The derm was at CNMC, our fave. After going through Luca's super long history, he took a quick peek at her skin. And he said, "I know this is going to sound crazy because you see how uncomfortable she is on a daily basis, but this is actually not bad for eczema." WHAT?! Really?! He explained that we had room to change things to provide more comfort, but that this is a chronic condition. He also asked for some allergy testing (which at the time, was already arranged).
He switched things. He gave some suggestions and then we were back out the door. I was stunned and skeptical that the change would work.
We have been using this new regimen for about a month. And guess what? Her skin is b-e-a-utiful. I cannot get over the difference. No longer scratching herself raw.
And the big change. Here it is. It's a secret so don't tell everyone. Here it is, the big reveal: we switched from lotion to ointment.
Can you believe it? Here is the deal. He liked the brand we were using already (Vanicream, it is awesome!). So he told me to switch to vanicream ointment (vaniply). He wrote a prescription for an ointment for when things are really bad. But otherwise, we just use the vaniply and use Sarna (over-the-counter, no-scent) anti-itch lotion on top of the ointment. Oh, and we use unscented gentle soap/shampoo only once per week. The rest of the time, we only use water to wash her. No wash-cloths (they can be rough on the skin).
I hate ointment. It is greasy and gross. But he gave me instructions. When Luca gets out of the shower or bath, gently blot her skin to get most water off. But while still damp, apply the ointment. Then let her run around for 10-15 minutes naked to let it soak in. Then apply sarna in places she is prone to scratch. Surprisingly, she is not very oily when we apply the ointment just as the doctor instructed.
It is amazing what a difference this change has made. Her skin looks and feels better and she is clearly more comfortable. No more scratching while sleeping. Family members have changed her diaper and come out saying "OMIGOSH HER SKIN IS SO MUCH BETTER." It is remarkable.
It leaves me asking: why the hell didn't we get sent to the derm sooner?! Poor girl has been miserable for about 1.5 years now. And this was such an easy thing to switch and try!
Oh well. At least it worked. She's ready for close-ups now.
(Did you make it to the end? Bravo. Seriously, impressive. Virtual high-five to you!)