Chloe's Next Step

I realize that this post is long overdue, and that many of my readers have been waiting for an update on Cassidy and Chloe.  We have been busy with doctor's appointments, tests and procedures, new treatment attempts, and, just as important, trying to maintain some sense of just being a family and "regular" kids.  I believe my last post that included a significant update was this one, when Chloe went in for her first set of scopes and biopsies. I mentioned shortly after that post that Chloe was, in fact, diagnosed with eosinophilic esophagitis.  So here are the details on Chloe since then...

Chloe's first set of biopsies came back showing eosinophils totaling about 30 per high powered field, which exceeds the diagnostic criteria for eosinophilic esophagitis (greater that 15 eosinophils per field).  Given the fact that she was also having episodes of difficulty swallowing and food getting stuck (dysphagia) and not gaining weight well, and the fact that she has a sibling with the same disease, the gastroenterologist, Dr. A, felt confident in this diagnosis.  So he referred us back over to the allergy and immunology department to complete the 3 types of allergy testing that we went through with Cassidy, which you can read about here.  So we went ahead with the testing, and found that between the scratch testing and blood testing she showed a likely sensitivity or allergy to milk and eggs.  The patch testing was a little trickier, in my opinion.  As I have explained before, patch testing involves placing pure food samples against the skin for 2 days, them removing them.  Results are read 24 hours later.  Having gone through this with Cassidy, I remembered a few of her reactions being quite pronounced the night before the reading, but more mild by the time the doctor saw them.  In Cassidy's case, the mild reactions were still noted in her chart, and it turned out that there were 2 that she could tolerate (corn and bananas) but others that she reacted severely to when we tried to reintroduce them.  With this in mind, I wrote down the numbers of the test areas which had clearly visible reactions at bedtime the day we removed the test strips.  The next day, 5 of the 6 looked much better, showing only mild irritation, so I'm glad that I made note of them.  Hopefully they will not actually be relevant triggers for Chloe, but if removing the 2 foods with clear positive reactions isn't enough, I'll be glad that I have these additional foods to try.



The bottom line for the testing on Chloe is that eggs and milk were positive, and the additional foods that I noted were soy, wheat, celery, beef and sesame.  I learned later that during the test reading, while I thought that none of the mild irritants were noted, her chart does actually list wheat and soy as possibilities, in addition to the eggs and milk.  For now, none of that is immediatly relevant, so bear with me while I explain.

Because Chloe's cell counts were around 30, which is twice the number required for diagnosis but still on the lower end for this disease (to compare, Cassidy's counts were around 50-60 the first time), there are 2 possible treatment options to start with.  One is the method we used with Cassidy, allergy testing followed by removing all possible allergens turned up during that process for 6-8 weeks followed by repeat biopsies to monitor progress. The other option is not removing anything from the diet and just treating Chloe with PPIs (commonly a reflux medication, including brand names Prevacid and Prilosec).  Apparently, in some patients with lower counts this alone is effective.  We ended up trying the medication alone for 6 weeks, although I have to admit that shortly after this decision I just didn't have a good feeling about it.  But we crossed our fingers and hung in there.  2 weeks before the repeat biopsies (which was about 4 weeks on the medication), Chloe started eating less again, waking up in the night and eventually refusing solid food shortly before the procedure.  Mark and I went in the day of the biopsies and scopes, June 13th, with a bad feeling that things would not be much better in there.



We should have been wishing for things to be the same.  After 6 weeks on medication, Chloe's entire esophagus is inflamed to the point that the tissue looks grainy and is friable (bleeds easily),  the furrowing from the lower third of the esophagus is now extending up to include the middle third as well, and her entire esophagus is covered in little white patches, which lab reports confirm are eosinophilic abscesses. The lab listed the cell counts as high as 70, which is more than twice the number that was observed less that 2 months earlier.  No wonder she can't swallow!  Mark and I were horrified.  The gastroenterologist explained his plan of attack to us. Chloe is now on a steroid treatment for a minimum of 3 months.  After 4 weeks we will let the doctor know how she is feeling, and 4 weeks after that, she will have another scope with biopsies to confirm the effectiveness of the meds.  The point here is to help heal the damage enough that she has some respite for what she has been going through, and also to confirm that the medication is effective for her.  Once she is doing much better and has healed, we will address the issue of changing her diet, and hope that making such changes works well enough for her that she will not need to remain on steroid based medication.
Removing the food immediately may seem like a better idea, but the problem with that is that we would not know, once she gets better, which treatment is the one working for her.

So far she has been on the new meds for about a week and a half, and while she does not report any improvement in symptoms, it can take longer than this for enough healing to take place that she will feel noticeably better. She is eating a little better most days, thank goodness.  I should mention that once the allergy testing was completed, I realized that Chloe had been pretty much already on an egg and dairy free diet, mainly because of Cassidy's restrictions and also in case dairy was triggering Chloe's migraines, for nearly 6 months leading up to her first scope (when the cell counts were around 30).  We did reintroduce both in the couple of weeks before her scope, but she was no longer interested in consuming much of either.  Since she is still eating both now, it is possible that this could explain the worsening of her condition.  However, it should also be noted that while this may explain the increase in cell counts from 30 to 70, it also means that something else was causing a reaction that resulted in the initial 30 cell count biopsies.  Maybe milk and eggs will be enough, but I'm not holding my breath just yet.  I'm increasingly glad that I noted the other 5 possible allergens during her testing.

While we do our best to sort all of this out, we are also trying to make sure that Chloe and Cassidy (I'll get to Cass in my next post) are able to just be kids.  True, they don't feel great much of the time, but they still have to be encouraged to enjoy their lives.  Otherwise, it is easy to slip into a rut of feeling sorry for yourself.  Once that happens, you tend to let the disease define you rather that just be an aspect of your life.  So when they are feeling up to it, we encourage them to play, dance, create and goof off.  While they have always been close, we have noticed them growing even closer as they bond over their shared physical discomfort and and the way the disease effects each of them.  What makes them different from other kids is many ways is the same thing that makes them even more like each other, and that bond is proving to be as priceless as the sisterly bond that they have always had.