Navigating through the subspecialty labyrinth....

"...At the same time, it is not surprising that these families fail to successfully navigate the subspecialty labyrinth. The gastroenterologist did the endoscopy and didn’t see much, the biopsy results were underwhelming to the pathologist, and the allergist said the child wasn’t allergic because the skin tests were negative. Random elimination of foods didn’t help. The child is still sick. Now what? Of course, there is no simple solution" from: The Mother of All Food Allergies.

We began the subspecialist labyrinth in Feb. with our referral to GI here, the above passage from this great artcle written about FPIES from a gastroenterologist says exactly our course.  Shuffled through GI, an endoscopy with biopsy's, to the allergist and elemental diet with elimination of foods, reintroductions and little man stayed sick.... "no simple solution" doesn't begin to describe the path we've been on for the past 8mo. through the subspeciality labyrinth looking for support for management of this chronic illness.  

Today, we hopefully took another turn closer to getting us out of this labyrinth, or at least show us there IS hope and choices and options for treatment, and support to navigate through it...

This gastroenterologist is associated with another (larger) Children's hosptial....so here is one option- we have another option for where little man would be hospitalized should he ever need this again, or for a food challenge (not trial, a challenge of an already known trigger food).   This hospital is not in our home, but an hour and half away- which is not ideal but more realistic than half way across the country that it would take for us to return to CHOP (no matter how much we would rather just go there). 

The GI started the appointment by explaining how he had read through little man's chart, which is always good.   He asked how he could be of help -- being that we've already consulted with allergists and another GI.  Management of his FPIES....specifically support is where we need help.   He wanted to know his story- when we first started noticing symptoms, when we got help, when we went to Philadelphia....wait, you physically went all the way out to PA? We explained how he seemed familiar but then not-so-familiar milk protein intolerance, but was he reacting to more in my diet? from almost birth and how his reactions to Good Start formula seemed to wake up a colic, then we moved to rice and other solids to try and get a better handle on what we thought was reflux or hunger, or what?  Soy formula last fall exacerbated a reflux, and colic.    He wanted to know when he had his scope and when we started the elemental formula's.   And what the first scope showed and the second, and how long on the elemental at the time of the 2nd scope?  And what is he like now?  What diet is he on, what does he tolerate.  What about this tapioca reaction, that seems out of the typical response?  Lots of good questions to get a good understanding of where we have come,what we have tried and where we are going.   He was thorough and listening.   He said key things like "I certainly don't argue with the parents"....."if they see something, then that is what it is- I don't live in your home so if you tell me something is wrong, I'm not going to deny it". 

What did he think of him reacting to the elemental formula?  He has never heard of it either....but he listened while we explained how we came to that conclusion and how we didnt' find a baseline until we finally moved away from any and all sources of corn.  He didn't dwell on this, instead saying if our Dietitian is following closely and our Pediatrician- than he sees no reason why Little Man can't be on a homemade formula....if we've worked it out for adequate calories, protein, fats and carbohydrates...

We moved on to discuss his anemia.  At this point, his concerns would be his protein intakes (getting better iron-rich sources of protein in his diet or formula) and treating his anemia.   He wanted to know why we had not done an IV iron transfusion since he does this all the time for his Crohn's patients- and they feel so much better after having it done.  He would be in the hospital and the iron would be transfused in him via IV.  He fully agreed that he has a risk of reacting to a blood transfusion and agreed it wouldn't be his first choice for little man.  

Pause for a moment with me....can you just imagine what it feels like to be in a room of a subspecialist who is acknowledging your son's illness, listening to your concerns and giving you real options for treatments of the complexity of it?   And giving you the support that he would oversee this at the Children's hosptial he works with if this needs to be done. 

This GI goes on to explain GI's are not typically the main doctors on an FPIES team, that you don't necessarily need the GI outside of needs for scopes.  There is little to test for and this can further frustrate a GI doctor who typically operate on diagnostic tests and criteria they can measure.  Remember, he is one- so he knows.   The good part about this GI, his good friend is the very Allergist we saw last month (Allergist #3 who confirms Allergist #2 diagnosis of FPIES).  He even went on to explain how he learned about FPIES.....everyone has to start somewhere....

A mom whose child did not tolerate soy and it was severe reactions to soy, was looking for help- looking to be heard. This doctor thought he had her simple solution- avoid soy.    But the mom was noticing pain and other symptoms with introductions of some other foods and did not know how to proceed, for fear of the soy reaction returning.  So she visited his waiting room everytime she introduced a new food.  Finally, he said they could challenge soy- since she was passing so many other foods.  He admitted her to the ER for monitoring, and fed the child soy.   A few hours go by and nothing happens.  So, he dismisses her- she goes to the parking lot and waits (she knows her child will be having this reaction soon).   Sure enough, the "vomiting her brains out" begins and mom brings her back into the ER.   The GI doctor was perplexed, called his allergist buddy and asked him if he knew what was going on, he replied...she has FPIES, haven't you heard of this?  He hadn't before, now he did.....

This mom's actions and persistance and advocacy for her daughter has made an excellent and helpful, FPIES friendly GI for so many other moms to follow her....I am grateful to her.   And I hope her daughter is now outgrown her FPIES and doing well.   Maybe someday I can connect with her (goodness knows, I sure have "met" a good share of FPIES mommy's already!). 

He continued to take his time with us, discussing our concerns and how he could be of help...I wonder if he realizes how much he already has?