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!