Trip to Pediatric Center for Rare & Complex Disease

We are back from our much anticipated trip to New York City to see Dr. Jyonouchi at the Pediatric Center for Rare and Complex Disease.  I am so grateful other moms told me about Dr. J.  Seeing her was totally worth the trip.  For the first time since Braxton was born, I feel like our family has a solid plan for how to deal with his food issues.  I don't particularly like some of the things Dr. J said, but I know that she is an expert and her directions will do nothing but help our family.

In a nutshell, she said that she believes that Braxton does indeed have FPIES.  In addition, she believes that he has a pancreatic enzyme deficiency.  Interestingly, she does not believe he is intolerant to elemental formula - though Braxton has never seemed to reach a baseline on elemental formula.  Instead, she believes that his reaction to rice cereal was so severe that it disrupted homeostasis in his gut.  Then, when antibiotics were administered, it wiped his system out... Basically, his digestive system no longer has the good bacteria that it should have because the severe reaction and antibiotics killed off everything in his system.  Because of this disruption to his system, every time he eats his body rejects the food.  He has been unable to heal completely.  We have been instructed to start Braxton on a medication to treat the pancreatic enzyme deficiency.  After we are certain he can handle this medication (several weeks of gradually increasing the dose amount), we are to begin giving him probiotics to re-populate his system with good bacteria.  If we do these things, Dr. J believes Braxton will eventually regain the ability to digest food as he should.  This does NOT mean that we get to just give him anything we want for him to eat. We have been instructed to strictly avoid all foods except for elemental formula for the foreseeable future.  In Dr. J's words, if we do food trials now "he will fail miserably."  We will probably wait until he is at least 10 months to introduce anything other than his formula into his diet.

Dr. J also took Braxton's blood to run tests.  Over the next 30 days, they will expose his blood to milk, soy, wheat and yeast and observe what happens at a cellular level.  They are also planning to extract white blood cells and stain them to study the physical make-up of his white blood cells.  After they are done, we will get detailed results about how his individual system reacts to these things.  It should provide us with even more direction!

After this trip, I can honestly say that it was worth the expense, travel time, and time off of work to see Dr. J.  I feel so much better equipped to finally help Braxton.  I am so grateful to all of our friends, family, and many other FPIES moms who have supported our family through this process.  I am very hopeful that things are only going to get better from here!