FPIES--how did we miss the signs?

Yesterday was Henry's allergy appointment.  I have to be honest I was reluctant to go.  I feel like
"we've been there, done that" when he was just 5 months old--all the skin prick tests came back negative.  I have to admit that when Henry's respiratory issues first surfaced, my first inclination was "could he have allergies?".  I have to admit I had an initial "gut feeling" that was quickly suppressed by doctors who told me that babies don't get allergies.  I pursued  an allergist anyway, all the skin prick testing was negative, but since she had two children of her own with MSPI (milk soy protein intolerance) she suggested that I stop eating milk and soy, since I was breast feeding and since Henry was having lots of mucousy diarrhea.   I did this and many of Henry's symptoms improved initially, until I started adding solids to his diet.  This should have been my first clue into Henry having a significant issue tolerating food proteins.  I guess I  never thought about solid foods playing a roll.   Henry was diagnosed with a type one laryngeal cleft around the same time, in  March of 2010.  After the cleft diagnosis, everything was focused on "airway."  I was so concerned about his aspiration issues that I didn't revisit the idea of food allergies or intolerance's.  Today I went back and read my blog posts on the laryngeal cleft kids website.  I read from day one until now.  I couldn't help but feel a deep sadness, as I everything I read, pointed to the diagnosis of FPIES--it's just I had never heard of it.  No doctor had ever mentioned it.    I guess my doctors weren't familiar enough with it, or we all were so fixated on the Henry's airway issues that we dismissed the possibilities of food intolerance.  All the while, Henry was failing to gain weight, he was anemic--all these things happened after the introduction of solid foods.  Failure to thrive, the increased coughing after eating, the difficulty swallowing, the diarrhea, random hives and rashes--then these weird spells where he would look like he was "passing out" and would become lethargic and unresponsive.  All of it was blamed on the laryngeal cleft and aspiration.  The thing that never added up for me, was that most children with a laryngeal cleft usually improve after the introduction of solids--Henry worsened.  I can't tell you how many times I questioned the doctors about this symptom,  over the past year and a half, but no one had an answer for me--no one.  The solution finally: "JUST DON'T FEED HIM any more."  It makes me sad that I knew in my heart that something more was wrong with Henry, but I pushed the feeling aside after months of Doctor's telling me that  "Henry is just different."  The doctors couldn't figure it what exactly was different,  but they didn't look into it further either.  I can't help blame myself for not questioning his  symptoms or pursuing a solution.  For months I thought Henry was going to need a tracheostomy so that he could breath--I was so afraid and obsessed with his upcoming airway surgery--which never took place; I couldn't see beyond the immediate obstacles.  I was so obsessed with him being able to eat by mouth and getting rid of his G-tube, that I didn't look beyond it and into the real reason behind his persistent reflux, chronic diarrhea and constant inflammation.

There is no sense going backward.  There is no sense obsessing about what I should have done.  I don't blame anyone, I just feel sad that Henry was suffering from inflammation and reflux caused by his intolerance of solid foods.  A friend and I discussed today, that ANY TIME a child presents with GI reflux that does not respond to medication, combined with diarrhea or vomiting, as well as failure to thrive--FOOD INTOLERANCE should be evaluated.   I think with Henry, as soon as the laryngeal cleft was diagnosed, nothing else was pursued, everyone was focused on getting him well enough to have a surgical repair of his airway--yet interestingly enough, his airway was so inflamed, that repair was not possible in May.  It was not until we took all solid foods out of his diet that he finally healed enough for them to reevaluate his airway in Cincinnati, at which time he was found to have an interarytenoid grove and not a true laryngeal cleft.


I share this info, because I have heard countless stories about other kiddos who can get well enough to have the repair of the cleft--what is typically to blame--persistent reflux.  What I kept asking myself--is WHY in the world does a child have reflux that persists beyond 6 months?  The doctors tell us that a certain amount of reflux is normal in infancy due to the natural forces of laying prone most of the time and that it's easier in the laying down position for milk to reflux up the esophagus.  Also the esophageal sphincter is looser and tightens as the child grows.  If most children supposedly outgrow reflux after 6 months, wouldn't persistent reflux warrant further allergy testing--especially if it is coupled with respiratory symptoms as Henry had?  Obviously, we know that with FPIESEosinephilic disorders?  Is it possible that infants born premature are at more risk for developing more gut issues due  both the early introduction of cows milk protein (formula supplementing in early life)  as well as the fact that their GI tracts are more sensitive and underdeveloped to begin with?    These are just questions, I don't know the answers, I think we are about 5-10 years out from doctors understanding the connections between such things.  Originally our ENT who was looking primarily at Henry's airway said that the majority of the children she saw with airway malformations also had reflux and that the two were connected--although that connection was not well understood.  I venture to question if food intolerance in many cases are the cause of severe reflux as my son experienced.

It regret to think that many children diagnosed with severe reflux and asthma could possibly have food allergies that would not show up on the typical skin prick test.  I think that as parents, we can only be proactive in asking doctors and as I did, trialing my own elimination diet and thus proving the connection between Henry's intractable reflux and respiratory issues.  I cannot emphasize enough, that if you have a gut feeling that something is wrong with your child, keep a journal of symptoms and seek a second and third and even forth opinion if necessary.

I am pleased to know that Henry is seeing an allergist at The Children's Hospital in Denver who is very knowledgeable about FPIES and is working with some of the top researchers to stay abreast of current research.  The program is connected with National Jewish as they also specialize in asthma and allergies.  I appreciated the insight our new allergist gave concerning how to proceed with FPIES new food trial.  He said that right now Henry is reacting to everything due to the inflammation in his gut.  This goes along with the leaky gut theory that the idea that the gut is damaged and thus more reactive to any and all foods trialed.   In an article in The Journal of Pediatrics, Dr. Putnam who saw Henry in  Cincinnati Children's states, "Continuing food challenges in the face of repeated failure is emotionally taxing and, if not carefully done, commits the child to perpetual illness during the failed search for something to eat.  It is essential to recognize these cases and suspend food challenges until such time as optimal health is restored" (pg 8, The Journal of Pediatrics, July 2008).

This ideology is exactly what our allergist presented to us.  He suggested that for the next 6 weeks we keep Henry on his safe food list and suspend any further trials until his gut has a chance to heal.  He also suggested that we come in for more skin prick testing prior to starting the solid food trials.  At first I questioned this, but he further explained that it would be prudent to test Henry for any IgE mediated allergies, that is, the allergies that create a histamine response.  IgE mediated allergies produce the typical symptoms we recognize when a child has a reaction to peanuts such as facial swelling, hives, wheezing etc.    Once, we know Henry's underlying IgE allergies, if any,  we would know NOT to trial those foods.  This of course makes sense to me, so we have that appointment scheduled in one month.  Andrew, his older brother, will also be tested as he has similar symptoms to foods and has had notable improvement since I've removed some of the trigger foods I've identified. 


All in all, we are making progress, and finally have a plan.  To be honest, I am glad to stop trialing food, as every day it seemed someone had a rash or diarrhea and with trying to figure out both boys triggers I have my hands full.