Tuesday, March 12, 2013

We Need an Answer

Rapunzel is having a rough go of it this week.  We were *SO* convinced that her allergy shots were causing her extreme skin flares.  It just so happened that once she got to her maintenance dose, her skin would flare really bad the day she got her shot, and it would take a couple days to get it to quiet down.  Then the next week, it'd flare again the day of her shot.  Well, after talking to her allergist last week, we decided to take a few weeks off from the allergy shots to see how her skin reacted.  It's been 2 weeks since her last shot and her skin is still in really bad shape.  I do believe that the allergy shots weren't helping at all, since she did flare when she got them (though the hope is that after a few more months of building up, they'd actually start helping), but they obviously weren't the only thing causing the flares.

Rapunzel and Hercules have been sharing a room for awhile now.  But lately, Rapunzel has been complaining that Hercules keeps her up at night.  We're not 100% sure of this (since when we go to check on them at night, most of the time he's already asleep when she's not), but to see if it would help, we moved Hercules into Aurora's room the past few nights.  Rapunzel also has a high quality air purifier and humidifier in her room that we've borrowed from some friends.  And on top of that, we set up the iPad to play music in her room all night to help her relax and hopefully sleep better (and scratch less).  She also takes a rx sedative to help her sleep.

We even decided to not wrap her arms and legs last night.  She was still scratching through the bandages in parts, but her back and neck were untouched.  So I thought that maybe the wraps were somehow causing more itching.

But this morning, Rapunzel's skin was just shredded.  Her hands, arms, shoulders, ankles, calves, knees, thighs, and back were just covered in blood.  She'd really done a number on her skin last night.  After applying rx antibiotic ointment and emollient, I wrapped her again to help her skin heal.

She just came to me and asked if I could unwrap her hands so that she could practice piano.  This is what they looked like.

I'm just at a loss.  I don't know what all is causing the flares.  I don't know how to keep her from scratching at night.  I feel like we are in a constant cycle of trying (and failing) to prevent infection, then treating infection, then starting the cycle over again.  The only time her skin is really clear is when she's on prednisolone and she can't take that all the time!  That is not an answer.  We need an answer!


  1. Poor baby :( I'm so sorry she has to go through all of this.

  2. Oh your poor baby. This just breaks my heart. I am praying you find an answer - and fast!!!

  3. Praying comfort for your sweet girl. Praying comfort for you and Eric. Praying for wisdom over the doctors to figure this all out. Tell Erica that Madison prays for her every night.

  4. Poor little darling! I remember when my son's hands looked like that - mostly around spring allergy season and peaked that season when he was three. Then we got a good handle on his food triggers, but still don't have a good grasp on the seasonal allergy reaction. I totally believe it's the allergy shots doing this to her - where they for seasonal allergies? Do you use cortisone daily? I don't have any experience with it, but have been hearing a lot about topical steroid addiction. Is it possible she's going through this as well?

    HUGS!!!! It WILL get better.