Thursday, February 28, 2013

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!

Wednesday, February 27, 2013

This is where the journey begins

For the purposes of this blog, my name is Ariel.  My husband Eric and I have been married for 11 1/2 years and have 4 children.  Belle is 9, Rapunzel is 7, Hercules is 4, and Aurora is 3.  And no, those aren't their real names either.  We're not THAT cooky. ;)  I am starting this blog to track the journey we're on with our daughter Rapunzel and her allergies and severe eczema.

At 4 mos old, Rapunzel was diagnosed with eczema by her pediatrician.  It was mild.  Nothing a little Eucerin cream couldn't handle.  In March 2009, when Rapunzel was 3 years old, we moved from Houston, TX to San Antonio, TX and it didn't take long for her skin to take a turn for the worse.  In May of 2009, we had an allergy skin test performed, but nothing came up positive.  For 3 years we went back and forth between her pediatrician and dermatologist trying to "fix" her eczema.  We tried all sorts of different creams, oils, ointments, cortisone creams, antihistamines, and other meds.  She'd get better, but then get worse again.  It seemed like a never ending battle that just kept getting worse and worse.  Finally in the spring of 2012, I followed my gut and took her to a different allergist and had her allergy skin tested again.  WOW.  She was allergic to so much!  She had 5 food allergies (peanut, soy, corn, peas, and oranges).  She had a huge amount of environmental allergies.  Many many different kinds of trees, grasses, and weeds.  Most were severe.  We removed all of the foods from her diet, which was extremely overwhelming at first.  You won't believe the amount of things that contain corn or soy until you have to start reading labels.  After removing the foods, we noticed a huge improvement in her overall health.  She wasn't "feeling bad" all the time anymore.  She was able to get up and play and not feel sick like she had been.  This was great news!!  Unfortunately, it didn't help her skin at all.  After 6 more months of going back and forth between the pediatrician, dermatologist, and now the allergist to try to control her uncontrollable eczema, we started allergy injections in October 2012.  She went twice a week for 2 months, and now goes once a week.  After 2 mos, her eczema was the worst I'd ever seen it.  After 4 mos, it was even worse than that.  I felt hopeless.  Every time we took her back into the dr, we were told the same thing: "You're doing everything right.  You're doing everything you're supposed to be doing."  That is not much consolation when your daughter is still suffering.  A couple weeks ago, I took Rapunzel back into the pediatrician, because she was overly fatigued, not eating or sleeping well, not able to focus, and just all around not doing well.  She ran a bunch of labwork on her and everything looked great except for one thing.  Her eosinophils were at 21%.  Eosinophils are a type of white blood cell that is elevated when your body is fighting against an allergy.  Normal range is below 4%.  So Rapunzel's were VERY elevated.  Her body was working VERY hard to fight against her allergies.  That is why she was feeling so bad.  Her skin was also starting to get very torn up from her scratching so much.  Her itch is intense.  We decided to see the allergist the following week to see if they recommended we continue the allergy injections for her or not.  By the time we got in to see them, her skin was so infected.  She was starting to run a fever and it was just not good.  They put her on antibiotic and prednisolone to get the infection under control and changed up her antihistamines again to try to help control the itch.  That's basically where we are right now.  We are waiting for the referral to go through so that we can make an appt. with an Immunologist at Texas Children's next.  I will be chronicling our journey here.  How she's doing day to day and any new treatments/plans we begin.

As of today, this is our regimen:
antibiotic - twice a day
prednisolone - once a day
Zyrtec - twice a day
Pepcid - twice a day
probiotic - once a day
multivitamin - once a day
fiber supplement - once a day
fish oil supplement - once a day
soak in cool bath followed by either Coconut Oil or Vaniply ointment - twice a day
Mupirocen on any open wounds
Bleach baths - 3 times a week

We continue to avoid all known food allergens and strictly limit time spent outdoors.  She wears long sleeves, pants, and over the knee socks as often as possible.  We recently got her hair cut very short to keep it off of her neck and out of her face.

On a positive note, when she has good days, they are SO GOOD.  She can light up a room with her smile.  She is so smart and creative.  She LOVES to read.  She enjoys playing the piano and hanging out with friends.  She is a cuddle bug and in fact, is curled up right against me on the couch as I type this.  I love this girl so much that it hurts sometimes.  I hate seeing her in pain and miserable.  And I'm not settling for anything short of an answer that helps her!