Here we go again...

I was amazed at how many people read my post on Eosinophilic Esophagitis (EoE) and our journey through the diagnosis and treatment of the disease with our oldest daughter, Cassidy.  The post, which you can read here, gave a very abbreviated version of the story, but I think the basics were covered as clearly as possible.  It was a hard road, and still is, and it certainly altered our lives.  Shortly after Cassidy was diagnosed in June 2011, we started to see some concerning signs in Cassidy's little sister, Chloe.

 I should first explain that Chloe has always had a rough time in some ways.  She is by far the most easy going of the 4 kids, and like all 4 kids, she has always met or exceeded her developmental milestones and that sort of thing.  We are thankful for that.  But Chloe has been through plenty.  She had severe newborn jaundice, and was admitted to the children's hospital when she was 5 days old for a couple of days when it reached a dangerous point, but she recovered quickly, well and fully.  By the time she was 5 months old, she had eczema so severe and spreading so quickly that the pediatrician had already sent us to a dermatologist, who had in turn already sent us to a pediatric specialist because he ran out of options that he felt comfortable with for an infant that young.  For 2 years, she saw the head of the Allergy and Immunology department at AI DuPont Children's Hospital every 2 to 3 months. For the first year of that process, it was a struggle just to keep things from getting worse.  We tried everything.  I went on a 5 food elimination diet while nursing twins (not eliminating 5 foods, I could only EAT 5 foods), we bathed her in distilled water, she had a rotation schedule for her medications for the eczema, which at times was open or scabbed skin that covered almost 2/3 of her body. That meant that she was prone to bacterial infections, which had to be treated with topical or oral antibiotics (usually topical) which then caused fungal infections.  It was no joy ride, that's for sure.  By the time she was 2 and a half, we had her skin pretty well controlled.  It was just before that when she started complaining of "owies in her head".  So, at 2 and a half, she was diagnosed with classic migraine headaches.  They run in the family, with juvenile onset even, but not at 2 and a half.  She still has migraines and eczema, and has had an increasing record of poor weight gain and low grade fevers.  She also went through an extended period of frequent vomiting. As we learned more about eosinophilic disease with Cassidy and struggled to get her health under control, we saw Chloe start to go down hill rapidly as well.

When Chloe started complaining of chest pain (Cassidy's biggest symptom), I took her to the pediatrician to get a referral to the same specialist that Cassidy sees, Dr. A. At that visit, we learned that while she has gotten taller, she has not gained any weight for a year and a half.  The regular doctor referred her over immediately, and before we even reached the first appointment with Dr. A, she started to have episodes of dysphagia, which means trouble swallowing or, in her case, food getting stuck in the esophagus.  Dr. A moved her into an urgent slot and saw her immediately.  Within a few weeks, he had her in the O.R. for scopes and biopsies.  I started this post in the surgical waiting room at AI DuPont, while Chloe was having her upper endoscopy, colonoscopy and biopsies. She did pretty well with the procedures, and now we are waiting for the lab results so we know exactly what we are dealing with.  I have seen a huge show of support from friends and family, which we all deeply appreciate.

Assuming that Chloe's diagnosis of an eosinophilic disease is confirmed with the biopsies, which is highly likely, we can only hope that it is no more severe than Cassidy's, that it is confined to the esophagus which is much easier and safer to treat, and that her list of forbidden foods is at least partially the same as Cassidy's. In order to have a diagnosis of EoE, biopsy results must show at least 15 eosinophils in at least 2 high power fields in biopsies of the esophagus.  Cassidy's biopsies showed 50-60 eosinophils per high power field in each of 11 different biopsies taken of her esophagus. How Chloe's numbers compare to those remains to be seen, but we should have at least some answers from the lab by the end of this week.

I will be sure to post updates here on the blog for friends and family members, or concerned readers.  Please leave me a comment or send me a message if you have any thoughts, questions, or words of support.

For more information about eosinophilic diseases, please visit www.apfed.org.