Cassidy's Next Step

Since my last post brought all of you up to date on Chloe, this one will do the same about Cassidy.  In some areas, we have made, or at least maintained, our progress.  In other areas, not so much.  As I always say, in the process of sorting out the causes and treatments for the kids various health challenges, we also work hard at trying to maintain a normal childhood for them.  It can be difficult to explain how hard this can sometimes be.  I recently saw a short video created to promote awareness of eosinophilic diseases, in which a mother of 2 EGID kids tried to explain how painfully frustrating it is when well meaning people make comments like "But they don't look sick" or "She looks fine to me".  The mother explained that it is more about what you don't see.  You don't see our kids when they are vomiting or have headaches, the fatigue, body aches, abdominal, chest & throat pain.  You don't see the lack of or loss of appetite or difficulty swallowing.  We keep our kids home when they are feeling this way.  So naturally, when most people do see our kids, they "don't look sick".  You also can't see the frustration that goes along with the strict dietary restrictions.  How would your child feel if they could never eat the cake at the birthday parties that they attended?  They can smell the pizza but cannot taste it.  They cannot have ice cream on the playdate or field trip to the creamery or amusement park when everyone else is trying to decide on one scoop or two.  As parents we struggle not only to keep our children nourished, but also to compensate for the things that can make them feel angry, frustrated or left out while also helping them to accept these aspects of their lives and not be defined by them. So while these comments may be well intentioned, they can be irritating to us as parents, and can make our children feel as though no one else really believes there is anything wrong at all.  To a child suffering with chronic pain, frequent tests and procedures, and extensive dietary restrictions, feeling as though someone does not believe that they have suffered is heartbreaking.




Now that I got that out of my system, on to the health update.  At the time of her scopes and biopsies in November, Cassidy's esophagus was clear, her stomach was normal (and had been prior as well) and the microscopic inflammation in her colon had gone from patchy to uniformly covering the colon.  Due to still having abdominal pain and the change in the inflammation, she started taking Asacol to treat her colon in February.  By late April, her lower abdominal pain was better but not completely gone, and she had added bouts of severe, intense mid and upper abdominal pain. On June 20th, one week after Chloe's biopsies, Cassidy went back in to be scoped and have biopsies taken again.  That evening after we came home and the next day she had abdominal pain so severe that we ended up back in the emergency room to rule out complications from the colonoscopy (there were none).  The lab reports showed that her esophagus is still clear (hooray!) but her stomach now shows some chronic inflammation.  It's microscopic, and a single finding of it at this point does not point to anything significant, so for now that information is just tucked away in case it changes down the road. Her colonoscopy still shows microscopic inflammation throughout, although there are some changes from last time.  I don't think it is really accurate to say that it is worse, but it isn't better either, just different.  As in the past colon biopsies, there were neutrophils present.  These are the most common type of white blood cell, and it is my understanding that they are commonly present most of the time where there is inflammation or infection, so that was not a surprise.  Also noted this time were eosinophils.  While that sounds alarming at first, it is important to note that about the only place in the body that it is normal to find small amounts of eosinophils is in the intestinal tract, and the amounts found in Cassidy's biopsies, while not specifically noted before, are within the normal range.  The last type noted were plasma cells. Plasma cells are also a type of white blood cell, and are usually present in cases of either a viral infection or an auto immune problem.  Again, these cells were noted in the lab report, but in small numbers that, at this point, are not specific or indicative of anything.  Maybe all of this will snowball into something worse, but maybe it won't.  Right now we have to take it at face value.  Wouldn't we expect to see less inflammation after months on the Asacol?  Probably.  But there is no way to know for sure if, had she not been on the meds, she would be much worse now.  There are no definitive answers as to whether it is helping or not.  Maybe without it she would have been in horrible shape.  Maybe she would have been fine.  No way to know for sure.  Regardless, while these findings are different, none of them really explain the level of severe pain that she battles from time to time.

So we have a couple of things that fall under "the next step".  First is ruling out any other possible causes of the newest pain.  Coming next week are CT scans of the abdomen and ultrasounds of the liver, pancreas and gallbladder.  Also on the agenda, which we actually started last Saturday, is removing gluten from her diet.  Cassidy does not have Celiac disease, but she could still be sensitive to or unable to tolerate gluten, which could, possibly, be to blame for some or all of her lower GI problems.  This does not change anything as far as her eosinophilic esophagitis, this is in addition to the EoE. So all of the previous dietary restrictions will remain in place as well.  We will be strictly gluten free for 6 weeks. She will either feel better a few weeks into this, or she won't.  Then we will have an answer to the gluten question either way.  Once that is worked out, we will address the Asacol.  She will stop taking it, and she will either stay the same (in which case it wasn't helping anyway, so we can safely wave goodbye to the side effects, such as headaches), or she will get worse, in which case we will have another piece to the puzzle and she will go back on the Asacol or maybe another similar medication that does not cause some of the same side effects for her.  We will wait until after the gluten test for that, because if we make both changes at once and she improves, we will not know for sure which treatment was effective.  Her siblings have been wonderfully supportive of the new restrictions, asking about the ingredients of everything that comes out of the grocery bag, and being careful, when spontaneously hugging their big sister, to not squeeze her "special tummy" too hard.

Maybe we will get some answers next week, maybe in a month, maybe later than that.   At this point, I find myself sometimes just hoping to ever know what is causing my child this chronic pain.  I believe that we are in excellent hands with our gastroenterologist.  I couldn't ask for a more thorough or devoted physician, and he and his staff are always patient with my endless questions.  Even when they are frustrated, the girls love Dr. A as well, which helps so much.  I am also endlessly thankful for the outpouring of support from our friends and family, always offering to help out and always being so understanding when we have to cancel plans at the last minute or need to vent.  Pretty much every ounce of our energy right now goes into helping all 4 kids cope with all of this, and that would be so much more difficult if we did not have the support system and medical team that we have.






Hopefully the rest of the summer will go smoothly.  Beyond the immediate needs associated with all of this, we are also looking forward to this time next year.  In July 2013, the American Partnership for Eosiniphilic Disorders (apfed.org) will be holding their annual conference in Philadelphia.  Only 45 minutes from my house?  Yes, please!  It will be wonderful if things are under control for both girls by then, but either way at least one of us will be attending.  Over the years, Cassidy and Chloe could improve greatly and require fewer, if any, medications and dietary restrictions.  Or they could get worse.  There is really no way to tell.  For now we will focus on getting through the next 6 gluten-free weeks, then the next couple of months after that.  Always moving towards the next step, one step at a time.