Mummy

As Rapunzel's skin flares, her itch gets more intense.  Which means she tries to scratch, scratch, scratch.  Which can (and has) lead to skin infections.  People with eczema tend to harbor more bacteria on their skin in general, so when the skin barrier is broken, it's much more likely to get infected.  During the day, we can try to deter her from scratching.  But she does most of her scratching while she's asleep at night.  One of the things we recently found that helps, is wrapping her arms and legs at night.  After she has soaked, and we've applied her ointments, we wrap her up mummy-style with bandages and tape.  I ordered a huge box of different colored bandage tape online and she likes picking which color mummy she'll be each night.  We wrap her from the hip to toe, and the shoulder to fingertip.  This helps keep her from scratching her arms and legs during the night (she can still scratch, but can't get to the skin to break that skin barrier).  It's helps a lot to let her skin heal from an infection and to help keep it from getting infected again.  If her skin is trying to heal, I'll even wrap her on days when we're going to be at home all day.  It takes about an hour each night for her to soak, apply ointment, wrap her arms and legs, get dressed, take meds, brush teeth and hair and get into bed.  It's takes slightly less time each morning that I don't have to wrap her.

Here you can see her hands wrapped this morning, as she's playing on the iPad (she embraces the bed head).  She had an eczema flare yesterday and is still recovering from it today.  She scratched so much last night that she was able to rip part of her bandages away on her upper thighs, forearms, and hands, leaving open wounds.  (When I wrap her at night, I wrap her thumb up with her hands so that she has even less mobility with it to scratch, but during the day, I leave her thumb out so that she can use her hands for daily activities).  So today, I've had to apply antibiotic ointment to her wounds and wrap her again.  She'll spend most of the day at my side, so that I can help deter her from scratching more.  It also means that most of her schoolwork will be adjusted since she can't grip a pencil to do much writing with the wrap on her hands.  So any work she does today will be either on the iPad or oral.  It's days like today that I'm so thankful we homeschool.  I honestly don't know how on earth I'd be able to keep up with her skin care if I had to send her off to school each day.

Keep it Covered

We have found that one of the best ways to keep Rapunzel from scratching is to simply keep her skin covered. It's been easy to keep her in pants, long knee socks, and long sleeves through the fall and winter. It doesn't keep her from scratching altogether, but it at least helps her nails to not make direct contact with her skin all day long. However, we live in south Texas, which means we've already started getting warm fronts, and in another month or so it will start being warm all the time. By May, the weather will be HOT and will stay that way until October, when we get our first cool front (if we're lucky). So it won't be long until she can't get away with wearing pants and long sleeves anymore. On top of her eczema, Rapunzel also suffers from "hypohydrosis" which means she doesn't sweat much. Her body has a hard time cooling itself, so we have to make sure she doesn't get overheated. So while pants and long sleeves may be good for her eczema, it would be detrimental for her to wear them in the extreme heat of south Texas.

So for this spring/summer I'm planning to get her a wardrobe of cotton tshirts, skirts, and leggings mostly and hoping that works well. It's all about finding the balance between covering as much skin as possible without overheating.

Hydration is Key

Eczema is a very complex disease.  There are so many things that can factor into the severity, the manifestation of it, and the treatment.  It varies greatly from person to person.  That's one of the reasons that it's so difficult to treat.  There is not really a cure for it, so instead you're left to try to figure out the root cause, and in the mean time, treat the symptoms.

The biggest thing we can do for Rapunzel right now is try to keep her skin hydrated.  Because of the eczema, her skin does not hold onto moisture well at all.  So it kind of feels like a losing battle.  But it's not one I'm going to surrender to.  She takes multiple daily soaks in the bath (just water - sometimes bleach, but I'll touch on that another day).  We've had to find just the right balance though.  Too warm of water, she starts itching.  Too long of a soak, she starts itching.  It's recommended for her to soak 10-20 minutes.  But we've noticed that when she soaks for longer than 3-5 minutes, she starts itching uncontrollably.  And that is pretty counterproductive.  So we've started shortening the amount of time she soaks, which in turn has helped us to be able to lower the temperature of the water without chilling her (cooler water helps fend off the itching as well).  However, no matter how long she's in the bath, we have to get a barrier on her ASAP to help lock in that moisture.  Within just a couple of minutes of getting out of the bath, her skin is bone dry again.  Lotions are a no-no for extremely dry skin because of the high water content, which just evaporates.  Creams are a good choice for moderately dry skin, because of the higher oil concentration, which acts as a good barrier for keeping moisture in and irritants out.  Ointments are the preferred moisturizer for severely dry skin because they work best for retaining moisture, though they tend to be a greasy mess.  We've found that for Rapunzel, ointment is the only way to go.  Yes, it's a mess.  But lotions and creams just don't do enough for her fragile skin.  She goes through clothes like crazy, because of the amount of ointment we have to apply to her skin daily, which, as you can imagine, does a number on her garments.

Right now, our ointment of choice is Vaniply Ointment.   A friend of ours recently recommended coconut oil for us to try on her skin and gave us a little sample of it.  I've been using that for a few days and do like it so far.  I'm not sure if it does a better job than the Vaniply or not just yet.  It does make her smell like a tropical princess though!  And I'll take any excuse to refer to her as a princess and see the smile on her face that follows!