Last December we went to see Dr. Wood at Johns Hopkins for a second opinion of how Callie's EoE was being treated. If you remember he encouraged me to feed her everything but the top 5 allergens which was a much more aggressive approach than what our GI/Allergist team in Fairfax was recommending (at that time we were introducing one food per month and scoping every 3). After following up with our home team, we decided on a hybrid approach and sped up the introduction of all fruits and vegetables, but waited on everything else. Around that time I discovered the Children's Hospital of Philadelphia (CHOP) has a special center for pediatric eosinophilic disorders. They are considered one of the top 4 EoE specialty centers in the country. I started the process to have Callie seen there for yet another opinion since Hopkins and Fairfax recommended such different approaches. After 6 months of waiting Callie's appointment was last week! So my little girl and I took another road trip, this time to Philadelphia.
Callie was seen by Dr. Chris Alexander Liacouras (GI), Dr. Jonathan Spergel (Allergist), and Michele Shuker (Dietician/Clinic Coordinator). We met with Dr. Liacouras first. I reviewed Callie's history and explained when her EoE was first discovered the hospital told me it was caused by either acid reflux or food allergies. So they put her on Prevacid and eliminated all food from her diet (replaced by 100% elemental formula Elecare). Sure enough that cleared everything up and we have been slowly introducing food ever since while regularly scoping to make sure she is not having any reactions. I then asked if CHOP would have handled her case any differently. He said yes! He went on to explain they would have only put her on Prevacid at the beginning because how do we know if reflux is the problem or food allergies?? I just looked at him and said good question. <sigh> He said there is a chance she only has reflux. And if this is the case her diagnosis is technically considered PPI-responsive esophageal eosinophilia (PPIRee)*, not EoE!! Crazy. So the bottom line in his opinion was to give her everything (no diet restrictions) and then scope in 2 - 3 months to check for a reaction. There is a chance we will get lucky and have a clear scope meaning she does not have any food allergies. That would be incredible.
Next we saw Dr. Spergel. He agreed with Dr. Liacouras and also recommended that we do not restrict her diet. At that point I had had a little more time to think this through and asked what he thought about holding out on dairy at first because milk was a large part of her diet right before she was diagnosed. It would not be a surprise to me to find out she has a milk allergy. He agreed it would be fine to give her everything except dairy at this time. So in 2 - 3 months we will scope and if it is clear, we will then add dairy and scope again in 2 - 3 months. If that scope is clear, we are food allergy free! Worst case scenario is the first scope is not clear and we have to back up to where we are today and take it slower. Or we find out at the second scope that she has a milk allergy. But best case scenario would be learning she has only reflux. Amazingly Dr. Spergel said they un-diagnose about 1 of 3 kids who see them for a second opinion! Wow.
Our last appointment was with Michele Shuker. Now that we decided on a diet plan, we had to discuss how to get the foods into Callie. Unfortunately due to her neurological condition (PMG), she has oral motor problems and can not chew food effectively therefore many items are a choking hazard. So even though she is now allowed to eat almost anything, she is physically not able to. We first decided to move all of her formula tube feeds to the night and cut another 100 - 150 calories to hopefully make her hungrier during the day. This means her new schedule is a slow continuous tube feed from 10pm to 8am. Then she will eat solid food for breakfast, lunch, dinner and snacks. I am trying to make everything into consistencies she can handle and am currently trying to get her to eat as much as possible orally. If we are not able to get enough into her (we need to get a good quantity & variety for an accurate scope as well as make up her missing formula calories), I am going to start supplementing with a blenderized diet. A blenderized diet is regular food blended to a consistency that can be easily passed through a feeding tube. Of course this requires purchasing a $500 blender. Yikes.
Callie has already been enjoying a wider variety of foods over the last few days. Allen & Owen made homemade Chinese dumplings the other night and she enjoyed eating the centers with us at the dinner table. I look forward to being able to feed her off my plate at restaurants. This is an exciting time! I feel comfortable taking this big step now that both Hopkins & CHOP feel it is the best way to proceed. I am trying not to get my hopes up too much, but it would be amazing to find out she does not have severe food allergies after thinking the worst last year when she was diagnosed. We will know in 3 - 6 months!
This is the only picture I took in Philadelphia. Not a great one, but here is our Callie girl on the way out of CHOP. Headed home with optimistic thoughts.
*I found this online to help understand her possible new diagnosis of PPIRee:
Eosinophilic esophagitis (EoE) and gastroesophageal reflux (GERD) both cause esophageal eosinophilia. Reports show that esophageal eosinophilia meeting criteria for EoE may respond to acid suppression mono-therapy. Consensus guidelines have termed this entity "PPI-responsive esophageal eosinophilia" (PPIRee) and recommend a trial with proton-pump inhibitors (PPIs) prior to a definitive EoE diagnosis. The mechanisms of PPIRee and whether this represents a sub-phenotype of GERD, a sub-phenotype of EoE, or its own distinct entity remain unclear.
