New EoE Opinion

Callie and I took a road trip to Baltimore yesterday afternoon.  We had an appointment to see THE allergy expert Dr. Robert Wood at Johns Hopkins.  I booked the appointment about 6 months ago for a second opinion of how her EoE is being treated.  We took Callie to Hopkins last year for a second opinion with a neurologist, but did not get much out of the appointment other than peace of mind that Callie was being treated properly.  I figured it was worth the trip again even if we just found out we are doing everything “right”.  I was surprised to find out he had a completely different opinion! 

First of all, I was instantly impressed with Dr. Wood.  He came in and greeted us before his assistant doctor, Dr. Neuman, came in and went through Callie’s whole history with me.  Then Dr. Neuman excused herself to discuss Callie’s case with Dr. Wood.  While we waited, Callie had fun playing with another little Callie. :-)

 

 

Then both doctors came back in to answer my questions and Dr. Wood gave his opinion.  We started by discussing her patch test results which showed she is allergic to nearly everything.  Dr. Wood simply said patch tests are not accurate and he does not put any stock in their results.  He does not even use this type of testing on his patients anymore.  I thought that was interesting.  Then I shared how I felt that the process of testing 2 to 3 foods every 2 to 3 months and then scoping seems painfully slow and I am not happy with how she is put under for the scopes so often.  It cannot be good for her!  Is there any other way??  To my surprise he said he felt like this current treatment plan was “ridiculous”.  He went on to say he would take a much more aggressive approach.  He said if Callie were under his care he would have her eat everything except the top 5 known allergens which are milk, soy, eggs, wheat and peanuts.  He would have her eat everything for a few months (introducing a new food every 4 to 5 days) and then scope her.  If we are fortunate, the scope will be clear and we will have narrowed her allergies down to one or more of these 5 foods.  I can’t tell you how happy I was to hear about this possibility!  Imagine eliminating a year (or years?) of scopes!  There is no telling if it will work, but the more I think about it the more I think the potential reward outweighs the risk.  The worst thing that can happen is she has a reaction (her EoE flares up and her esophagus gets inflamed again) and we have to wait two months or so to let it clear and go back to just apples, bananas, sweet potatoes and carrots, which is where we are today.  We would waste about 5 months (3 months of introducing foods, and then 2 months of healing).  But at best we could eliminate years of introducing just one food per month and then scoping every 3 months.  In just 3 months from now we could possibly increase her diet from just 4 foods to nearly every food except 5!  Dr. Wood also said it is possible that she is just allergic to milk, since that is primarily what her diet was made up of when she was diagnosed with EoE.  Imagine that!  This gives me so much hope.  I am trying not to get to too excited, but I can’t help but to feel hopeful.  The thought of knowing if her allergies are extensive or not in just 3 months from now is so great.

He went on to recommend that we consider reducing her Elecare formula intake by around 15% during the day to hopefully stimulate her appetite and willingness to eat.  Hopefully when we get her ENT issues resolved in the next month that might also help.  Now that she is bigger and on the growth charts she can afford to give up some calories from the formula.  We should be able to make up the difference with food, especially if she is allowed a wide variety.  Of course we still have the huge hurdle of her not being capable of chewing and eating more solid foods yet.  She is still on purees and mashed food.   So even if she is allowed to eat everything, we have to figure out how to get it into her.

I left the appointment feeling hopeful and after thinking about it for the last day, I feel like we should follow Dr. Wood's advice.  At the very least we can move in the direction of his opinion by introducing 10 or 15 new foods instead of just 3.  Unfortunately this now puts us in the position of being caught between two doctors.  Next Monday I will be meeting with Callie's EoE team (allergist, GI, dietitian, etc.).  I will need to explain Dr. Wood's opinion and try to get them on board.  If they are not agreeable to the plan and we want to follow it anyway, we might have to find a new GI who will work with Dr. Wood.  He already said he will accept Callie as a patient if things do not work out with our current team.  I am a non-confrontational person, so I am already dreading this appointment on Monday.  Please pray that we are making the right decision for our little girl!