Allerbling

Allerbling- a kid-friendly allergy band.   No, it's not a full medic alert bracelet, although it does have the medic alert symbol on it.   There isn't anywhere to put any personal information.  But Little Man's allergy is not immediate anaphylaxis, and he's never far from us.  This allergy band is intended to be a starter band for him, to help others be aware of his multiple allergies (which are not all able to be on his band).  His band has room for a medic alert symbol, dairy allergy alert, soy allergy alert, wheat allergy alert and CORN allergy alert.  He loved it right away.  It was reasonably priced and something he'll wear that will attract the appropriate attention (hopefully) to his needs.  He calls it his "arm" and we don't leave home without it. 

IV Iron Sucrose = corn

Little man has had IV before:  IV hydration, IV dextrose, IV nutrition.   His iron has been administered via IV and his anemia responds well to this, restoring his bodies iron stores to make oxygen rich hemoglobin for energy and brain health.     

Little man has had IV iron Dextran in the past.  Dextran is a sugar made of many glucose molecules.   Sugars for IV (detrose, dextran, sucrose) are most commonly derived from corn.   We have always seen some symptoms with these IV solutions, but never very significant.  Nothing significant enough to over-ride his need for receiving the solutions.   It is always a lesser of two evils approach.   IV dextrose brought him out of acidosis following tapioca fail; IV nutrition healed his villus atrophy, IV iron dextran corrected his anemia.   IV iron dextran takes 6hours to infuse.  There is a shorter version: IV iron sucrose.  

Sucrose is a sugar made of fructose and glucose molecules. So, it is a more complex molecule, that the body will still have to break down.  But wait, he has a gut allergy- right?  Yes, FPIES is a food allergy of the gut.  The gut takes the "hit"- as if there were hives or eczema happening on the surface of the intestines, or anaphlyaxis of the stomach.  But the mechanisms are thought to be T-cell mediated.  T-cells travel through the lymph system.  T cells are not limited to just the gut- that is merely where they are concentrated and trained to recognize for this type of allergy.   But Tcells also respond to skin- look up Atopy Patch Testing.   Also, read here: NonImmunoglobin E-mediated Immune Reactions to Foods by Dr.Spergel where he illustrates how learning about Tcells from Atopic Dermatitis patients has furthered understanding of this immune mechanism of food allergy.

So, dextrose is from corn, dextran is from corn, sucrose is also from corn (isn't everything?).  IV iron sucrose takes 45min. vs. IV iron dextran's 6hrs.  We know Little Man has symptoms from the iron dextran but we are suspicious that it is just draining to withstand an IV poke, followed by a 6hr.infusion.  It takes him a few days to re-coop from that.   We decide it is worth trialing the iron sucrose, to see if his body responds any differently, or at least see if the less time will be less draining on his system.  

We move nowhere while getting IV iron- there are too many residual symptoms to know what is related to what, and it takes too much on his body.  So any food trials we are doing, have to stop during IV iron. We are supposed to get it done two times a week, but with the 6hr.infusion, it is just too draining.  A 45min.infusion may give us that 2x/week and get his iron restored so we can take those symptoms, and the anemia out of the symptomatic picture.   It's worth a trial.  It's always all about the trials.  

Once again, he is fatigued during the IV placement, and lab draw- too tired to even fight me.  We get through the 45min.infusion and come home to relax.  I check his labs online, and see his hemoglobin is now up to 9.5 (from 8.5)! It rose a point with his previous infusion!   I am thrilled, but wait....that means the recent fatigue isn't from the anemia?  It's on the rise, a 9.5 is a GOOD hemoglobin for him!  (normal range is 10.5-13.5g/dl).   A look further down the list of CBC and I see his Leukocytes are low at 5.1 (normal range 6-11 x 10(9)/L) and his Platelets are high at 569 (normal range 150-450x 10(9)L).  These are his "signature" post-reaction labs.   Thankfully, they are only marginally away from normal range.   They can indicate either inflammation or infection in the body.   He isn't sick, but he is re-cooping from a mystery reaction.....now more clear, seeing these labs, it was a reaction- we just don't know for sure what to.  

We expect him to re-coop nicely, following a rest on the iron infusion day....hoping his hemoglobin levels respond nicely again to this infusion.  Instead -  he continues to decline.   Is he still re-cooping from the Saturday reaction?   Maybe.  But he is going on the wrong direction.....from bad to worse.  Why? And why is he so sleepy?  So fatigued? He seems flu- like, but isn't running a fever, has low muscle tone and is getting dehydrated looking, losing weight, and very pale.   His diaper changes are green, slime, mucus, and blood specked, and very randic smelling.  An FPIES family knows that reaction smell- the kind that you can smell from upstairs when he is downstairs!  The kind that takes 8hrs.to clear from your house, even though you wrapped up the diaper and put it right outside in the trash.  Yep, that diaper.   But, how does that happen if the sucrose (corn) did not go through his gut?   I suspect it has something to do with the involvement of the lymph nodes in the colon.   At Little Man's first scope, lymphnodular hyperplasia was visualized, it has been clear on every other scope but I suspect this lymph system would be "processing" those recognized Tcells- and the evidence is in that diaper.  

We hold him all the time for a few days- we contemplate bringing him in to see his pediatrician....we know there is little that can be done, and he is eating/drinking, and he's not throwing up, he's just so very tired.  This is reminding me way too closely of his post-corn fail last July...and I'm getting nervous- when will he turn the corner?   Two days later, with little change and no improvements, we try to get him scheduled with his pediatrician, and are unable to that day.  We got an appointment for the following day, and his pediatrician shares our concern that he looks "punky" and not his usual self.   He assures me his ears and lungs are clear, his breathing is steady, his blood pressure is stable.  We just need to wait it out, watch him closely, push fluids/his formula, the TLC we've already been doing.  He assures me he is on-call and wants to see him again if he does not improve.  

Already he has been making improvements that day, so we are hopeful he will continue to make improvements everyday.  Thankfully, he does.  Each day has gotten better since then and by this weekend (Happy Mother's Day), he was finally talking, smiling and playing again.   His energy is still low, and he's still re-cooping but making great strides the past few days as well.   We have some ground to make up, as he lost almost 2# over the past few weeks.   His appetite has been picking up daily, and he does well as long as his probiotic is in his formula (getting small amounts in every bottle). 

Little Man's daddy and I are sure this downhill slide wasn't as much from the reaction as it was from the sucrose- a full body response- sparing his stomach and small intestine.   We will not plan to do IV iron sucrose again.  It remains to be seen if we will need to go back to IV iron dextran.  We are hopeful to trial some meat soon instead.   How about Bison?

Research

Having a child with FPIES leads to daily research...research we don't even realize we are doing.   Research and experiments to see what foods they can tolerate, research to find which probiotic to use, which medication they can tolerate, do they need an enzyme, why is his iron low, which doctors are the most FPIES knowledgeable, what that test means, what scope results tells us, which foods are safe, which symptoms mean trigger and which ones are intolerance's or related to a cold or a 'normal' toddler behavior....it is every.single.day.   If it isn't being played out, it is on my mind.   What is our next step, where do I need to focus my research. 

It first happened last fall when we saw a GI doctor on 2nd consult, he called Little Man "FPIES plus"...he has FPIES to some proteins but something more is going on....but what is that?   My research led me to Non-IgE food allergy.  It appears the foods he doesn't have FPIES to, he risks Non-IgE allergy to.  Non-IgE allergy is a protein intolerance, of which FPIES is the severe end of the spectrum (in my opinion).   But how do we avoid his Non-IgE protein intolerant responses from becoming FPIES trigger reactions? 

A visit to the PCRCD with Dr.J and her advice is to correct the gut flora- re-establish his gut homeostasis with probiotics, and enzymes if needed (Little man has not been advised to start enzymes as his doctors fear he will react to them at this time- it is something we will re-explore in the future).   Dr.J was even concerned he may react to a probiotic.  She even gave him an oral steroid as her experience was telling her, he may need this to even tolerate the probiotic to re-establish his gut flora to achieve gut homeostasis, and not be so reactive to all foods.   As my last post illustrates, he did not tolerate the probiotic.   Now what?  Oral steroids?   I am not sure.   Steroids can wreck havoc on gut flora too.  

We go to see an Immunologist tomorrow, maybe we'll find a few more answers there.....but I have felt the need to bump up my research once again- to search for next steps to explore our little man's "FPIES plus". 

In the midst of researching next steps, I am also helping with Little Man's Benefit/Fundraiser.   I have already received so much help- from my sister, and a fellow FPIES mom who made the fliers you see/will see displayed.   I am so very grateful for the community involvement for supporting our family through this difficult time.   The goal of the benefit is to raise awareness, and share with our community the story of FPIES in meeting our son.   The goal of the fundraiser to raise funds for CHOP research; so that moms like me do not have to research every step of the way, so that doctors are better educated and aware of the symptoms and complexity's of this allergy, so that research can begin to see what the parents see in the day to day of FPIES symptoms, reactions, intolerance's....our daily research.   I have hopes that the CHOP research will pick up where other studies have left off.   Past research has already brought us to FPIES being a T-cell response, a Non-IgE food allergy.  Research has begun to define the Tcells and cytokines involved in these FPIES responses.   More research is needed on the immunological responses, on genetics, on allergy, on the guts role in FPIES.   Although there are little current FPIES specific study's being conducted, there are studies being done on oral food challenges (at Mt.Sinai), and on T-cell mediated responses (across the country) as well as the Non-IgE food allergy cytokine breakdown (at PCRCD).   For more information on research being done on Non-IgE food allergy that applies to FPIES read here for information on the research currently being conducted at the PCRCD. 

CHOP: "Hope Lives Here".   Even if Little man will not benefit directly from the studies we are raising money for....FPIES will benefit from Little man.  The research will be important to defining FPIES, to defining better treatment protocols, so that even if a child with Little man's "FPIES plus" presents in a specialist office, if FPIES is well-defined and treated....maybe, just maybe....the symptoms that arise from it can be well addressed before they become complex.

Immunological Basis of GI Food Allergy

My review of the article: The Immunological Basis for Gastrointestinal Food Allergy


Summary: Food Allergies are now being recognized as being a treatable component of the atopic march.

Food allergies are common in children. Significant impact on quality of life (more research is needed because of this increasing). Recently there has been a shift in the recommendations after realization that delayed food exposures may be harmful in immune sensitization. “Instead strategies aimed at early introduction of foods to induce oral tolerance are now being re-evaluated…very encouraging results are being obtained in desensitizing allergic children via oral tolerance.” (TH3 vs. Th1 responses). The goal is not to induce complete tolerance in all cases but to raise thresholds, thus minimizing reactions to trace proteins (increasing quality of life by better control of allergy).

Research has shown that all infants have T cell responses to food antigens . In a small subset of children, there is an inappropriate immune response which results to sensitization of food antigens. “The critical question is not necessarily exposure to food antigens but the nature and type of immune response which an individual generates to these antigens.”… not the type, timing or dose of exposure but these variables are imposed on the individual, and complex immune system- in a time when the immune system is still developing (infancy).

Progress in GI food allergy remains slow, given all the complexities. Food allergy in children remains treatable when properly diagnosed and after a period of avoidance, oral tolerance is developed. The studies have increasing emphasis on immunology.

The paper goes on to discuss current research on the timing (early exposures or delayed introductions of food proteins into the infants diet) is affecting the rise in food allergy. It sites this article article for references as an excellent read on the growing/ongoing subject of research into infant food allergy (delayed introductions past 4-6mo. May have negative effects vs. previously thought of protective effects on oral tolerance.

The article goes on to discuss Regulatory T Cells and Food Allergy. “it is clear that there exists a population of CD4+, CD25+ T cells in blood whose primary function is to regulate immune responses”. Studies have shown that infants who develop food allergies have lower Treg cells function than non-allergic infants…”suggesting that a defect in Tregs may predispose to food allergy”. More research is needed in this area.

It covers a little in this article on desensitization in food allergy- by repeated systemic treatment with allergen. It is being recognized as treatment for allergies although specific mechanisms remain unclear it is thought to be “induction of Treg cells or blocking anti-bodies, or both. Desensitization is sublingual immunotherapy (SLIT)- small amount of allergen is placed under the tongue, and oral immunotherapy (OIT) which is feeding small amounts of the allergen". It does go onto to describe a more recent approach of introducing allergens via extensively heated proteins (with IgE antibody allergy) and studies have confirmed this with milk allergic children tolerating extensively heated milk. It goes onto to clarify that the goal of this immunotherapy isn’t only to allow the food to be completely tolerated (non-allergenic) but to simply raise the threshold of tolerance in anaphylaxis response allergy (thereby increasing quality of life).

The article also sites the Finnesh Allergy Programme 2008-2018 as a “highly ambitious project to reduce the burden of allergies” Stating that the background is based on immunological responses- focused on continuous exposure to antigens and strengthening and restoring immune tolerance mechanisms.

The article wraps up with a mention of delayed onset food allergies (and how slow research is in understanding it), but points out that IgE allergy are T-cell dependant as well so that there can be crossovers in strategies.

PCRCD

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 thing...like 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.  

We're going as fast as we can...nowhere.....

One year ago, the last week in Feb., we took away all food from Little Man.   He was 8mo.old.  I also stopped nursing him and we changed him over to an Elemental formula - Elecare, as he was continuing to react to my milk despite going dairy/soy and then also wheat free.    Unfortunately I had no idea of a very real possibility of a corn allergy.   I did not know that his intolerance's of medications could indicate a corn trigger, or that when I gave up wheat and introduced more corn-was the reason he got worse instead of better on the elimination diet while breastfeeding him.  I was even feeding him some corn products!  But we were so lost then.  

Are we less lost now?   Yes, and no.   We've learned so much over the past year.  If I had known then what I know now, we could have really saved Little Man some pain....but that wasn't God's plan.   We have to keep remembering we are mere servants to God's plan.  My Faith is the only thing bringing me through some days.   Days I've had recently where I am emotionally and physically drained.   Going at this moment by moment.  We're going as fast as we can....no where. 

Every food we try, he reacts to- usually by day 3.  Sometimes there are early signs that it may not be going well but not enough to stop the trial....slow it down, keep it steady- yes but not stop.   And then it's as if the floor falls out from underneath and the symptoms build.  

What is going on?  Yeast? Bacteria? Leaky gut? Over-reactive Immune response?  Held off food for too long and now he's over-sensitized?  All of the above?   What are we missing?

I feel as if I am standing over a 5,000 piece puzzle....I have so many of the pieces in place but I'm still standing here with a few- and I can't find where they go.   The puzle looks complete, but did I put one in the wrong place?  Do I need to look at it up-side-down?  Turning, turning, turning those pieces to see where they match up.   It just feels like I'm so close....so many, many hours of research and sleepless nights trying to wrap my brain around what is in the research and how it matches to not only my Little Man but to so many others who share similar experiences.  

I am optimistic that Dr.Jyonouchi at The Pediatric Center for Rare and Complex Diseases, and author of Non IgE Mediated Food Allergy can help me with these last puzzle pieces. I don't expect her to solve the puzzle- just help me to see how I can put the pieces in to fit so we can move forward once again.

FPIES Experts

I've had this post sitting in "edit" since Dec.22.   I sat in the hospital room with our Little Man, recording his daily activities (intakes, outputs, symptoms, etc) in my logs as I always do, watching over the plan laid out by doctors, checking on ingredients of things to be put in his body or on his body.  I wanted to trust doctors, doctors who I know have my Little Man's best interest in mind but also doctors who have no experience or prior knowledge with FPIES- or really anything like it.  Instead, I have had to become knowledgable in FPIES.

I've been finishing this post in my head with how I want to desribe what an FPIES expert is.   Lets start with the definition of Expert from: merriam-webster.com: "having, involving, or displaying special skill or knowledge derived from training or experience".   Well, my training is in nutrition and my experience is a 4th time mom with first-hand, deep-in-the-trenches FPIES experience.

Parents are experts in their own children, they know their moods, their cries, their personalities, their likes and their dislikes.  To add to that, the parents of FPIES children quickly become experts in FPIES.  We have to, there is so little known.    Yes, there are studies, such as FPIES caused by Solid Food Proteins and FPIES: Case study presentations and management lessons but there is only so much everyday information that one can gather from these studies.   At this time, the most I have learned is from other moms, found in online communities for support.   We would all like to see that changed, so future children do not have to suffer as ours have - searching for a diagnosis, a direction, a baseline.

A few days ago, I did a post on what FPIES has taught me.   Of course, having a son with a chronic illness has taught me a lot about patience, advocacy, perseverance, strength, love, and all that life has to offer.   But I am talking about what FPIES, first hand, has taught me about Non-IgE food allergies, delayed-gut, food allergies.   About digestion and GI health.   About food, and how it is made,processed and produced in this country.   All these things, I have been taught/trained in- I have a degree in Nutrition....but none of these things I understood the way I understand them now, having learned things from experience.   What I haven't learned first-hand, I have learned from other moms- with first hand experiences.  Connecting all this together for real FPIES information, real help.  

This brings me to my daily question: if I'm an "FPIES expert"- then why is my son struggling so much to find a diet?  To tolerate foods?  God is giving me a very important, and strong life lesson.  He sent Little Man because He knew he was strong enough to endure this- to teach me, to teach his daddy, to teach his doctors, all to help other children.   He knew that with my background, and my nature to want to help others- He could use me as an instrument. 

If Little Man hadn't been as sick as he was, in pain daily we would not have made the trip half way across the country to take him to an expert Allergist,  if he had tolerated the Elemental formula, if we didn't have to fight with him to eat just half of his needed calories from that formula, to remain on it exclusively- keeping food from him for 5mo. with only worsening symptoms (and inflammation) - I would not have had the drive to make my own formula for him.  If Little Man didn't have continued intolerance's, making his illness complex - I wouldn't have pushed for 2nd opinions and a change in doctors on his Medical Team for his care.  If we hadn't done a soy trial- would we have known about the villous atrophy component of his FPIES?   God is putting all this in our path, all the atypical FPIES experiences in one Little boy so that his doctors will learn and help other children; and so we will learn and pass along what we have learned in hopes of helping other children/families. 

We, the moms, are FPIES experts, and the learning continues daily....

Multivitamin trial....the rest of the story

If you're tuning in to find out how the multivitamin trial is going....it's not.   We left off on Day 3, diaper blow out in the afternoon.  His formula intake was increasing and he was getting fussy but remained optimistic, until the vomiting....

Projectile, forceful, violent until emptied stomach contents...sigh....sigh...sigh.    This reaction reminded us a lot of when he was reacting while breastfeeding (trace proteins in my diet were likely culprits some days) because he was up for drinking his formula (he always was a comfort nurser too) and we feel this really helped him as he seemed to be doing ok.  Of course, he was tired but I wouldn't call it lethargic -- it's always hard to tell at bedtime because of course they want to sleep...it's bedtime and they just emptied the contents of their stomach...I'd be tired too.   But, his breathing and color were ok, and he drank a good amount of formula before going to sleep.  So, we were feeling it was a "minor" reaction (it was after all just trace proteins).   That is until the loose stools/diarrhea started....and they haven't stopped.   He was awakened 3x during the night for explosive diapers, and continued to have them all day Friday, but then they seemed to be starting to thicken up (he was eating really well on Friday).  So, things were looking good- his behavior was good and his color still looked ok. 

Things started to turn around nap time (what nap time?).  He couldn't settle in to sleep and I spent half the afternoon just trying to make him comfortable enough so he could find that rest his body was needing.   Little Man's daddy and I decide, we are done with the vitamin.   This was a "minor" reaction, from TRACE proteins and he is experiencing all of the all-too-familiar-going-on-and-on reaction symptoms.  Friday evening started to bring on concerns as his color started to look off.   We got stool samples to check for infectious sources of his diarrhea and we attempted to get a lab draw.    From previous lab draws around reactions, we have observed that he gets elevated platelets, and often has decreased leukocytes as well.  And then, there is always concern for his hemoglobin and his hydration.   No lab draw, all attempts failed and all we were left with was a very unhappy and tired little boy.   Having difficulty finding a vein, and difficulty drawing from that vein are very typical for Little Man around a reaction, also very typical among other FPIES children (from what other mom's share)....this is one of the reasons why an immediate IV for fluids is advised- not only for hydration but also because of the affects it has on the body only makes it more difficult to find that vein needed to start the IV fluids.   

We have learned another lesson about Little Man and I am prompted to push once again for more detailed needs specific to his condition to be in his chart....we should have gone to the ER with that vomiting.  But it wasn't severe, and he drank right after....but his body needed that IV.  But I have no doubts that doctors would have disagreed- his color was still good, he wasn't lethargic, he wasn't dehydrated looking, and he was drinking....we would have wasted our time trying to convince ER doctors not familiar with our son and his very rare condition, that the IV would help him.     Unfortunately, this is part of the nature of this diagnosis.  The unfamiliarity of it leaves the parents making choices and decisions on their own that would otherwise be better guided by experienced medical staff.   Little man has had more minor reactions than full blown, we are fortunate in that he doesn't always experience full shock- his body has had times of shock symptoms and also acidosis but these are not immediate- only after days of "fighting" and his poor little body can't take anymore, does he start to exhibit these signs.   Would the immediate IV help?  The thought (and experience from other moms) is: yes,it does.  But, again- you can't just show up in an ER and expect doctors to insert an IV on a child that isn't currently in shock, or even to the point of dehydration...yet.    How do we change this for Little Man?  How do we change this for all FPIES children?  

Typical allergies, with IgE mediated immune response, children carry epi-pens so that parents/caregivers are enabled to help their children, while still seeking out medical assistance.   Non-IgE (FPIES) children carry an ER letter that describes an full blown attack with the recommendations for an IV and maybe even steroids-- but so many times the attack stops by the time you get to the ER, or the attack is seemingly minor (although I challenge someone to watch your baby vomit as violently as FPIES kids do and call it minor- we have classified it as minor because we have seen, and heard of, worse).   Vomiting 50x in one hour, and your child's heart stopping- that is worse, that is "full blown"....so my Little Man vomiting 4x in 15minutes until his stomach is empty and dry heaving but then stopping- that is "minor".   But both scenario's need medical assistance, need the IV (and maybe someday there will be even better treatment options to helping stop the reaction) but for now- getting the toxin out of the body is the body's only defense mechanism.   And maybe the IV not only helps with hydration so the body can re-coop better; maybe it helps to "flush" the system.  It would be nice to know if this is something that would help our Little Man.   We will look to try and get his chart updated, once again, to reflect his needs-- should this kind of reaction happen again; and given his history, it will....

New Guidelines for Diagnosis and Management of Food Allergy in the United States

There has been a release from the National Institute of Allergy and Infectious Disease, a component of the National Institute of Health.  The guidelines were developed over a 2yr.period with combined efforts from an Expert Panel from 34 professional organizations, federal agencies,and patient advocacy groups.  The full report can be viewed here: The Journal of Allergy and Clinical Immunology 

The full report is 84 pages long.   The first glance I took of it, of course I skipped through to where it mentions FPIES.  Yes, that is right- it gives an entire section for FPIES.   It is a very real diagnosis and having it mentioned here in the new guidelines for food allergies is a big step for the future of these children affected by it.   But the report is, of course, not limited to FPIES.   I have begun to read through it and am impressed with the information it provides, updated information that is needed as this country's food allergies are on the rise daily.   In fact, that is one of the reasons they developed the new guidelines. 

The first thing I notice is in Section 2 (pg7): Definitions   "A food allergy is defined as an adverse health effect arising from a specific immune response that occurs reproducibly on exposure to a given food."  This is updated terminology to address both IgE and Non-IgE food allergies.  Typical immediate onset allergies are IgE, that is IgE-mediated mechanisms are involved.  Non-IgE are delayed and thought to typically involve cellular mechanisms.  "The terms Allergy and Allergic Disease are broadly encompassing and include clinical conditions associated with altered immunologic reactivity that may be either IgE mediated or non-IgE mediated".

It goes on to describe terms such as Food Allergen, this addresses foods or specific ingredients and components in a food (typically proteins).  It also addresses cross-reactivity definition and significance in food allergy.  Food oils are considered low allergenicity if virtually all food proteins have been removed in processing (note low, not non-allergenicity). 

I am pleased to see that there is a lot of language in this report to describe diagnosing food allergy- not limited to serum levels of IgE, but in response to tried-and-true elimination and challenge of the foods.  Things to be considered is the level of reaction, the quality of life - the balance of benefit and harm..."identification and avoidance of foods responsible for food-induced allergic reactions improve quality of life and potentially prevent life-threatening reactions and disorders.  With the appropriate evaluation, there is a low risk of erroneously diagnosing someone as food allergic and adversely affecting his or her nutritional well-being and social interactions".  

This is an important moving forward (and over due) step in the world of Food Allergy.  And as not only a mom of an FPIES child, but a Dietetic professional as well, this is of critical importance -- to properly recognize, diagnosis and treat food allergy's not only so that diets are not over restrictive but also, on the other end of the spectrum,  so that proper identification to symptoms can be made, and treated with removal of the offending food(s).   This is important because as of now, allergy's are only considered "true" if they produce an IgE and immediate immunological response.   These guidelines are helping to redefine, and hopefully reshape how adverse reactions to foods are viewed, and thus diagnosed and treated.  It is very important to be able to treat so many growing number of protein intolerant infants and toddlers, to have recognition that not all food allergies are IgE response, that Non-IgE food allergy's exist, are prevalent and a significant adverse health effect on children suffering from them.

Food Protein Induced Enterocolitis (FPIES) and Food Protein induced allergic proctocolitis (AP) are initially described on the bottom of page 8. 

A table (in section 4, pg 20) for "Diagnosis of food allergy: when should a food allergy be suspected?" and includes delayed GI reactions as well as other cutaneous, ocular, and respiratory delayed symptoms (as part of the cascade of symptoms)- it should be noted that the expert panel notes that food allergy rarely causes isolated respiratory symptoms such as asthma and allergic rhinitis.  

Included in section 4 (page 22) is an outline for Differential for Diagnosis of Food Allergy, which include addressing adverse reactions to foods that are not allergenic in origin. 

A few pages later (page 27) is the discussion on Diagnosis of non-IgE-mediated immunologic adverse reactions to food.  This is where FPIES and AP are described as Guideline for diagnosis, rationale and the balance of benefit and harms. It is a good synopsis of the research on FPIES thus far.   I am happy to see it has it's place here and described so well for the clinicians.  There are additional research articles on FPIES, and additional research is being done to further understand this diagnosis, and ultimately (hopefully) find better treatment options to provide to the families struggling with a severe protein intolerant child. 

I am still reading through the rest of the report, it covers a lot of new language, encompasses newer research, clarifies IgE reactions.   In general, it is well written report and hopeful that with FPIES and AP being included; it will begin to be in the differential diagnosis for more kids presenting to the doctors offices with feeding intolerance's.