Mothers Intuition

Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...

Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.

And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

Tuesday, February 15, 2011


This week, we are going to see Dr.Jyonouchi (Ja-nouch- is how her assistant told me it is pronounced but she said they often call her Dr.J).   She is head of the PCRCD (Pediatric Center for Rare and Complex Disease)- she is currently doing a research study.  I found some information on one of her current studies here: Autism Research Institute.   

The study is titled "Th cell polarization and candida reactivity in autistic children with food allergy".   This study is described as "Our previous study has shown that a high percentage of ASD children with GI symptoms reveal evidence of non IgE mediated, delayed type food allergy (NFA) against common dietary proteins (DPs) and their clinical features are similar to those in non-ASD children with NFA. In infants, the gut immune system is immature and oral tolerance develops slowly during the first 2-3 years of life. Thus, most non-ASD/NFA children outgrow this condition by 3-4 years of age. However, ASD/NFA children appear to require a longer time to outgrow NFA, indicating a possibility that ASD/NFA children have immune abnormalities rendering them more reactive to ‘harmless’ luminal antigens (food and commensal flora.) In this study, we thus hypothesize that dysregulated gut mucosal immune homeostasis is associated with altered innate immune responses that affects development of T-helper (Th) subsets. There are two specific aims for the current study: (1) Assessment of Th cell polarization in ASD children with NFA by intracellular staining of lineage-specific cytokines in Th cells. (2) Assessment of anti-inflammatory Th cell responses in ASD children with NFA by measuring production of counter-regulatory cytokines in response to specific luminal Ag in comparison with responses to stimuli of innate immunity. Our long-term objective is to assess immune abnormalities associated with oral tolerance in ASD/NFA children. Obtained data are expected to be helpful for identifying risk factors for development of NFA and dysbiosis in autistic children."

Wait, you say, but Little Man does not have autism, or any autistic symptoms?  No.  He does not.   However, I have seen a connection.  This doctor has noted the connection.  I am anxious to meet her and hear what she has to add to our puzzle.   Autism is a puzzle as well, food allergy can be one piece of that puzzle.   The same abnormal response to food proteins our Protein Intolerant children experience, is what some percentages of autistic kids experience as well.  

In this paper: on Food Allergy by Dr.J she speaks about this Non-IgE food allergy.  It is a comprehensive paper in which she also describes IgE vs. Non-IgE food allergy and a worthwhile read.   She does note that in her research and findings that she does not see an increase in non-IgE food allergy in the autism population but just that their symptoms are not addressed correctly, or misdiagnosed because of the complexity of other symptoms of their Autism.  Adding to that that many autism kids are non-verbal for many years makes it difficult to assess their symptoms.   She goes on to discuss further the possible effects of allergy on cognition and behavior.  There are many reported successes with implementation of a dairy/gluten/soy free diet for autism spectrum disorders, not all kids respond to the diet but many do.  The parents are noted to have said "it is like a veil is lifted" when the offending foods are removed.   I find that very interesting as I watched my Little man recover when we removed all his allergens, once corn was finally completely removed from his diet - I even said the same a veil was lifted....a veil a mother knows is there but no one else can see.  A little boy trapped underneath the inflammation inside his body.   Not autistic.  Symptoms from the food allergy response in his body, also experienced by autistic kids, that further complicate their response to other treatments.    I also find it interesting that many of Little Man's symptoms to food failures are: disturbed sleep, hyperactivity, mood swings, blank stares....there is a gut-brain connection.  Dr.J's research is defining that.  

The above mentioned current research study may not be the exact one Little Man is participating in, I will find out more about that when we get there but it is along this path.   I also have reviewed many of Dr.J's other papers and studies and feel we really will have some knowledgeable assistance for our puzzle.   Like I've mentioned before, her article on Non-IgE food allergy alone has helped me work my way through the puzzle; but executing/testing for/and applying her mechanisms to Little Man has been the delay.  Now, to have the opportunity to her personally apply those, in her clinic consult and research study.  To think that Little Man's severe protein in tolerances will help her study and understand more about protein intolerance and also about how it affects autism is inspiring. 

I have so much more floating through my head, but want to break it up some (for readers and my benefit!).  As I continue to prepare for the appointment, I continue to take notes from my readings and think of questions I may get a chance to ask her....I get more and more anxious and excited to get to Thursday's appointment!! 

I really do have hope that there is a piece of our puzzle there in NJ, and am hoping and praying that the quick trip out there to pick it up will be worth it.  


  1. Joy
    It's just amazing reading all of this and seeing the conection Dr. J and you talk about. Yesterday we saw the allergist and he confirmed that both my son's have FPIES. Interstingly, my older son, has been "accused" of behavior problems--but as you mentioned--I am seen a dramatic change in his behavior after removing the "offending" foods. He used to have these so called "tantrums" in which he would scream non-stop for hours, but it wasn't the typical toddler melt down--I knew something was wrong but he couldn't tell me. It was like he was totally out of control and he would finally just sob and say "mommy hold me." He and my youger son never slept through the night and now that I have removed the trigger foods--they are sleeping soundly for 10-12 hours every night. This is no cooincidence. I hope that your trip to Dr. J is helpful for you--I feel like who better to go than you--you have so much insight and I hope she will answer some of your burning questions! God bless

  2. How was your appointment?