Tube Feeding Awareness Week 2014: Nothing Can Hold Us Back

Little Man has had the assistance of tube feedings (parental and enteral) for his optimal nutrition for almost 3 years now.  He originally had 5 weeks of TPN in December of 2010; which restored his damaged villi from a soy trial (that was not safe). He did well for months but then a bad reaction that set off a spiral that set him back and, in the summer of 2011,TPN became necessary once again.  

Little Man has villi damage with many of his reaction flares and without the complete nutrition of a safe and tolerated formula, his body was not able to recuperate from multiple "smaller", and sometimes more chronic reactions following the acute reactions.  He remained on TPN from August 2011 – February of 2012 when we decided he was ready to challenge his gut again, and he received an NG Tube to trial his 6^th formula, a corn syrup free formula, Alimentum RTF.    In March of 2012, he had his G tube placed.  It was in the weeks following the G-tube placement that his body made it clear that it was not able to accept the Alimentum RTF as nutrition, much like so many other formula’s and foods before.    It was then that we proceeded with the blenderized diet that he is on now.  One of our comforts when the decision to place the G-tube was being made was that we could blenderize safe foods.  With his strong oral aversions and the growing nutritional needs of a growing boy, he was not able to eat enough of his safe foods daily to maintain at ‘baseline’ much less when recovering from a reaction when his body needed that nutrition the most but when he ate even less.  There were several factors that went into that decision to place the G-tube – the most important factor of course was for optimal nutrition to grow and thrive.  The G-tube has made such a significant difference in our ability to move past surviving to thriving as a family and most importantly, to his quality of life and thriving through this allergic syndrome.  

This year’s theme for Feeding Tube Awareness Week is “Nothing can hold us back”.  So, I wanted to take a look back at just how far we have come.  Come, take a stroll with me (I can't believe it has been almost 3 years!):   

In 2012, Feeding Tube Awareness was hosting its 2^nd ever Feeding Tube Awareness Week.  We were fairly new to Tube feeding ourselves, being on TPN.  I had just written this post: TPN.  Look, Oley Foundation even commented on it- they are this year’s official partner organization with Feeding Tube Awareness for Feeding Tube Awareness week!  I hadn't heard of them before that, but have learned a lot about them since and they are an excellent resource for “Help Along the Way”  (Help Along the Way is their most recently launched program, how fitting for the tools and resources they provide)!   

For Feeding Tube Awareness Week 2012, I had just written about where we were at with our "Super Tubie" status and how we were in the depths of making some decisions about his continued nutritional needs.  That very week, Little Man was hospitalized due to a shock reaction (at home we didn’t know if the reaction was sepsis because of his line or an FPIES reaction, so in to the ER we went); thankfully it was not sepsis in his central line for TPN but this 2^nd scare of sepsis (having had it once already) was enough for us/his GI doctor to push for the ‘gut challenge” and do some food trials to see how his gut could respond and recuperate on its own- without TPN.   We were grateful for what TPN had given us, had given him but we knew we needed to keep his gut active and now was the time.  He got his NG tube placed the following week and the G-tube a month later.   Little man continues to process and cope in his own ways.  Seeing challenges through the eyes of a child can put things into perspectives, read about how Little Man views his tube: For when I am weak I am strong. 

For Feeding Tube Awareness Week 2013, I wrote a story for Complex Child EMagazine sharing how Little Man was “Overcoming the Small Percentiles” and then made this video to honor FTA week and how far Little Man had come – from TPN to NGT to G-tubes to keep him thriving and growing.  

This video I made last year is Little Mans’ “nothing can hold us back” story.  

The feeding tubes he has had served their function to save his life.  I am always and forever grateful to those that pioneered the field of TPN; because at a time when Little Man was simply too ill to tolerate anything but nutrition that directly fed his brain and nourished his cells, a time when his little body had been pushed so hard, pushed to the edge, repeated reactions and stress to his body without the nutrition and medications to help him heal and necessitated this form of nutrition.   I am appreciative to the moms that started Feeding Tube Awareness Foundation, even as a nutrition professional who knew the ‘other side’ (nutritional) of Feeding tubes, nothing could prepare me for that being my child needing one.  Feeding Tube Awareness Foundation is there, to help normalize this medical necessity, to help you feel not so alone, to know there is a place where other parents share experiences that may be able to help you when no one else understands what you are dealing with. 

Today, Little Man’s G-tube provides him over 50% of his nutrition – via a blenderized diet of most of his safe foods, given in bolus feeds throughout the day.  This keeps his nutrition optimized for his growth and quality of life.  The tube also serves to keep him hydrated following a reaction, and keep his blood sugar stable during a reaction, as well as medication as needed from the pain of a reaction.  It keeps food positive, as he is able to eat his safe foods as he desires, while he works on his aversions.  It has helped his quality of life so that “nothing can hold us back”.    This week, I plan to provide a few additional glimpes into what Tube Feeding looks like for Little Man, so come on back! 

Little Man's "Faces of FPIES Spotlight" visit with Hope for Wyatt

When I first started blogging, among the reasons to do so was to share Little Man's story with others - to keep friends and family updated but also to help other families know some of the experiences we have had.  This blog, although I have written nearly 400 posts in 3.5years, is a mere fraction of what Little Man's FPIES is and looks like from day to day; and that is only a mere fraction of who HE is.  FPIES is a diagnosis, not a definition.

I wish I could share more, I wish I had more time to share more because I have always taken my time with my posts -- being very careful about what I put "out there".   There is so much to Little Man's story that would be scary to read if you didn't know his whole story, so my blogging has lagged behind.   Some would say (have said) that my posts here, sharing Little Man's experiences, are 'scary' in and of themselves, just for being what they are.   I wonder if those people think of what they are saying?   That a little boys life is scary? A sweet little boy only wanting what any other 2, 3, 4 year old boy would want from life -- to be happy, safe and loved.  I never intended telling his story would be 'scary' because his life isn't scary.   FPIES itself can be scary, not knowing how to help your child through the pain, symptoms and vomiting of the FPIES being "triggered", not knowing how to properly read a food label, or how to completely exposures of the 'trigger' food, not having adequate medical help when your child is sick,....these can be what is scary about FPIES.  But, they don't have to be.   One can learn how to read a food label, how to avoid a food trigger, how to avoid cross contamination triggered symptoms and reactions, how to advocate for your child with their medical team -- your partners in the care of your child.   Our son's experiences and life are not scary, FPIES can be scary but it doesn't need to be.   Empower yourself, help empower others, share what you learn, advocate -- help your family, friends and doctors learn about what FPIES looks like in your child and how to help keep them healthy and thriving in their individual environment.  Get help and support and know you are not alone.

I am not alone in our blogging, there are now several dozen blogs dedicated to FPIES from other families on this journey, sharing what they are learning, what FPIES looks like in their child, how it affects them and their family.  A friend I have 'met' on this journey, who recently started to journal her families journey with Food Protein-Induced Enterocolitis Syndrome on a blog, "Hope for Wyatt", asked me if I could share Little Man's story for a "Faces of FPIES Spotlight" she is doing on her blog.  Hop on over and read what we shared on "Meet Samuel", and "meet" Wyatt and his family while you're there.

FPIES Registry!!

The FPIES Foundation announces the first of it's kind FPIES Patient Registry!  This is an exciting step for the families of children living with (and outgrown of) Food Protein Induced Enterocolitis Syndrome!!  A patient registry that provides a voice to patients in a rare diagnosis is so important, a diagnosis that still has research windows open with treatment and management protocols still being developed.  The exact mechanisms of FPIES is yet to be fully understood....and in the meantime, the number of those diagnosed is multiplying rapidly.   This is a critical time for the voice of the patients to be connected -- for doctors providing care today, for studies of FPIES, for additional, new and varied research for tomorrow, for families to be connected, for FPIES to be 'on the map' in this new way.

Please add your voice, your child's voice to this registry.  

FPIES: The Hidden Scourge of GI Food Allergies. Today's Dietitian Article

I am honored to have been able to provide an interview for this national magazine, bringing further recognition and awareness to this allergy and the vital role a nutrition professional plays on the medical team of a child living with FPIES.  

Food Protein–Induced Enterocolitis Syndrome — The Hidden Scourge of GI Food Allergies By Judith C. Thalheimer, RD, LDN  (Today’s Dietitian Vol. 15 No. 11 P. 12).  

Be sure to check it out! 

Advocacy

“I always thought someone should do something about that, then I realized I was someone.” ~ Lily Tomlin

FPIES and Advocacy are words that seem to go hand in hand.  Many times, for me, the word "over-advocate" has come to mind; but that is another story for another day.   Today, the story is on Advocacy in complex diagnosis.   Complex Child E-Magazine put a call out for parents who have advocacy stories to share them for their September edition, highlighting Advocacy.  As I mentioned above- I have a few on how I've had to advocate, and too many times, over-advocate for Little Man's needs (medical, physical, psychological, etc). All of these the inspiration to the one that I felt compelled to tell...the story of the beginning of The FPIES Foundation.  I wanted to help others feel empowered with the education and support they needed and to advocate where needed- for their children, for the diagnosis, for children that may follow in the spectrum of this diagnosis. No one should travel this journey alone.  A Foundation was needed, a Foundation I, along with 8 other moms and a community of families, created.  We created it to help families advocate for their little ones and their families within the challenging situations that a rare and little understood diagnosis of FPIES was, and remains yet.  A Foundation whose mission is woven into every ounce of our work, dedicated to offering tools for education, support and advocacy to empower families and the medical community.

You are invited to read more about the beginning of The Foundation for FPIES in the September edition of Complex Child: FPIES, The Formation of a Foundation.

Dear Sarah, I just didn't know about FPIES. Food Allergy Awareness Week 2013: A Guest Post

I shared a post the other day on Food Allergy Awareness Week, and what it means to me to bring awareness to FPIES. Today, in the midst of Food Allergy Awareness Week, I am very touched by these beautifully written words, expressing so much of the frustration, anguish and most importantly, forgiveness we must give ourselves, as mothers, that we are doing the best we can everyday.  This is shared by a fellow FPIES mom, whom I have had the honor to 'met' via a Parent-to-Parent support group.  Jenn Booth has given me permission to share her letter to Sarah, here, on my blog. 

Sarah, I just didn't know about FPIES.

If I had known that you could look adorable on the outside, but be very sick on the inside, I would have known how much you needed me to help you.

If I had known that your newborn tears were from pain, I would have complained less about being up all night.

If I had known that feeding you baby food would put your life at risk, I wouldn't have spent all day trying to get you to eat it.

If I had known that you were desperately trying to tell me it hurt your body to eat noodles, I wouldn't have made you finish them before I got you out of your highchair.

If I had known that you had no other way to tell me that you were suffering, I wouldn't have punished you for hitting me.

If I would have known that you didn't just "get the flu" more than other kids, I would have questioned the doctors more.

If I would have known that your tantrums were a cry for help, I wouldn't have let people label you with a "behavior problem".

If I would have known how close we were to losing you, I wouldn't have wasted time brushing my teeth before taking you to the hospital.

If I would have known that the cookie I gave you at lunchtime could make you throw up 4 hours later, I wouldn't have gave it to you.

If I would have known that food allergies don't always show up on allergy test, I would have tried an elimination diet earlier.

If I would have known that anaphylaxis is not the only kind of life threatening allergy out there, I would have demanded faster treatment at the E.R.

If I would have known that your vomiting, bloody diarrhea, screaming, constipation, hair loss, pale color and passing out was from food, I would have eased your pain sooner.

If I would have known the juice I was mixing your medication into was the reason you were constipated, bleeding rectally, malnourished, vomiting, and bloated in first place, I would wouldn't have force fed it to you.

If I would have known that pediatricians, children's hospitals, specialist, and feeding clinics could all be wrong, I would have sought help elsewhere.

If I would have known that there were other kids like you out there, I would have tracked down their families and compared stories sooner.

If I would have known that the scopes weren't going to show much because the prep for the scope is to stop all FOOD days before the test, I wouldn't have put you through it.

If I would have known that not all kids with FPIES outgrow it, I would have prepared better for the long haul.

If I would have known that some kids have NO safe foods, I would have been less freaked out about only having 27 safe foods.

If I would have known that not all ingredients are listed on labels, since you can never be sure how each ingredient is derived, I would have called food companies earlier.

If I would have known, if the doctors would have known, if anyone I rambled on to would have known, it wouldn't have taken 6 years to diagnose you.

If I would have known that at 7 years old you would be in so much pain and feel so "not normal" that I would overhear you pray to go to heaven early, I would have explained sooner that there is no such thing as normal and reassured you that it will get better someday.

If I would have known how embarrassed you are about a medical need to wear pull-ups at 8 years old, I wouldn't have waited to tell you that I was a bed wetter until 5th grade.

If I would have known how isolating, scary, confusing, frustrating, and financially debilitating it is for families living with fpies, I would have reached out to give and receive help sooner.

If I would have known how many well-meaning people would offer you treats, I would have stopped them before you realized you were missing out.

If I would have known how many good people we have in our community, I would have asked for help sooner.

If I would have known there was a place we could get information, support and understanding, I would have contacted thefpiesfoundation.org sooner.

If I would have known you were suffering from food multiple food allergies, I would have found you help sooner, saw you smile more, and kept you safer. Because I love you, because you are my child, because we are in this together, we will be okay.

Love,
mommy

Please spread the word. It is Food Allergy Awareness Week and these kids and their families don't need to suffer. This is a rare type of reaction to food, and most of the medical community are not aware of it, or don't clearly understand all the symptoms.
If you ever asked how you could help or if you know and love Sarah, please repost this, like this or whatever....after all, I did just tell you that I peed my bed until fifth grade. :)

Awareness is Action! Food Allergy Awareness Week 2013

If you follow this blog, you are likely aware that I am BIG on raising FPIES Awareness.  Maybe it's my personality, but I have always viewed awareness as an action. I am not simply raising awareness to the diagnosis but in what it means, and what ways we can be stretched to learn, and to be helpful.   To be empowered, and to empower others.

In the beginning of this journey, I was privileged to have a pediatrician for our boys that was good about knowing what ways she could empower me.   One of those ways was (and some may not understand this but thankfully she understood enough about me to know I needed it)....was to say she was stumped.  After week upon week of bringing Little Man in to her office, repeated visits for new symptoms or to review current symptoms, practically begging and often crying for help, thinking that if I just told her about this new symptom or did I forget to mention that incident; will I get closer to some answer she in her knowledge and experience, is considering?  Then, one day, she sat down and said, "I just don't know". Words probably easier for me to hear than for her to say (yes, words easier for me to hear).  I remember that day still so well because it changed my thinking, it changed me from waiting for someone to have an answer, to me finding an answer. It empowered me. She didn't know, but I did. I didn't know about FPIES then; but I knew my son, and I knew something wasn't right.  I would research day and night,and write down everything,and read every journal article I could get a hold of (which was only less than a dozen at that time).

Once we did finally find the diagnosis, I entered support groups, and I found myself surrounded by families in so many similar situations.  The need to be empowered to know how to care for this child with this rare, little understood allergy is so great, it is so needed. A mother has the intuition to care for her child from before they are even born....a connection so deep- poetic words (that I do not have) can only begin to describe.  What we don't know instinctively  we instinctively know where/how to learn.   But then, your child has this allergy that doesn't follow any rules and that robs you of the basic need to nourish them and you feel like you're standing alone and your toolbox is empty, or the tools you have in it don't fit at all and you lose time trying to use them, trying to make them fit.

So, during Food Allergy Awareness week, above other times in the year, my awareness is increased and I hope yours is too, and you will help spread the information about Food Protein Induced Enterocolitis Syndrome so that more families and more medical providers, are empowered to learn more, and become equipped with some basic tools for thriving through this disordered allergy of the gastrointestinal system.

Awareness is key, Awareness does matter. Awareness is Action. 

Sharing our story....

It was a decision to make our lives visible, our FPIES experiences known.  It was my first observation in this FPIES community, that there were more blogs and support groups than there was medical pages.  Sure, there were those handful of FPIES papers- mainly from Mt.Sinai where much of the FPIES research has come from over the years since Dr.Powell first coined this syndrome that had been noted by other doctors as a severe inflammation of the entire intestinal tract, causing vomiting, diarrhea, dehydration, often lethargy and sometimes bloody stools and shock symptoms.  There were a few moms, many of them also active in the support group on babycenter, that had started blogs - to share these everyday experiences, how they learned and their tools for thriving through this rare allergy.  In June, shortly after our formal diagnosis, I began this blog outlining our journey.  The good, the bad, the ugly. I quickly learned that as I was learning, this blog was becoming more about what I was learning- my inner working thoughts of how I was tying what I was reading in journal articles to my own son.   So, I started a 2nd blog- My FPIES File Cabinet, a resource page of sorts.  A place to keep those "research" posts filed, while continuing to chronicle the experiences we were having with our little man and his FPIES.  Since then, I have also joined with other moms and founded The FPIES Foundation.   I am passionate about sharing our story, sharing my personal insights seen through my clinical nutrition goggles; but also about sharing resources, tools, experiences, and insights - not only from experienced parents but experienced medical professionals.

From June of 2010 to today, August 29, 2012; I have logged 385 posts (and yet I'm still months behind) and have had over 35,000 page views (wish I would've figured out how to put that little page ticker on my footer at the beginning); it's been humbling to see how many have followed and shared in our story.  Sharing our story has become an important part of this ride, as others have done before and beside me- it helps.

"When you stand and share your story in an empowering way, your story will heal you and your story will heal somebody else"  Iyanla Vanzant.

With the busy-ness of 4 boys and summer, the complexities of FPIES, and my work with The FPIES Foundation, I have been a little more absent from updates, but do promise they are coming.  I've been keeping a journal as we go through this muddy mess we've been in with little man's FPIES as he approaches and passes 3yrs.old and still stuck, still adding new triggers and not outgrowing old ones...the updates are coming!   Overall, he is doing well, growing and gaining weight and meeting developmental milestones, and continuing to teach us about patience and appreciation for God's simple gifts in life.

In the meantime, I would be honored if you would check out the new website for The FPIES Foundation.   It is a 'labor of love', a resource packed with tools for new families and struggling families, a place to share stories and find support - a network of caring.  A place to come home.   We are not alone.

How to Help an FPIES Family

An informative and empowering post from The FPIES Foundation blog: How to Help an FPIES Family Today

We are so fortunate that our friends and family have been so incredibly supportive through the many stages of this journey.  Family, long time friends, new FPIES friends and even those whom we know nothing about....  There have been times when I read an anonymous comment on this blog and wonder if that person even realizes the impact of their kind and supportive words. There have been times when we have received anonymous and not-to-anonymous donations to help us through some rough times providing for a family through a chronic and rare illness.  How do I even convey what these gestures- no matter how seemingly simple they may seem to the giver, mean to me- to us.  Nothing goes unnoticed or unappreciated when the small things are the big things- like an illness that takes away your ability to feed your child.

If you're looking for a way to help and need some idea's, please read How to Help an FPIES Family Today

And thank you for all you do for our family, for your kind words, for your prayers, for your positive thoughts and comments left on this blog and sent in e-mails, and for the monetary donations for our family or for The FPIES Foundation to help them help other families, and for the time spent helping us with our other boys, and for the RV loaned for the long travel to specialists, and for the weekend (and longer!) visits to help watch our boys, and for helping purchase the Vitamix that now makes Little Mans' food every.single.day, and for the grocery help,and for the acceptance of our restricted schedule and our special needs to keep Little Man safe, for the care packages sent to his brothers- especially when he is in the hospital and our attention is so divided and energy drained; and for watching our boys while we go to appointments for Little Man or picking them up from the bus, and just for simply understanding the adjustments we have made to help our Little Man thrive, and for multitude of other ways you have helped!

What is a Rare Disease?

From Rare Disease Day website:

"A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.
• 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.
• 50% of rare diseases touch children.


Characteristics of rare diseases
The 6000 to 8000 rare diseases are characterised by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease.
Relatively common symptoms can hide underlying rare diseases leading to misdiagnosis and delaying treatment. Quintessentially disabling, the patients quality of life is affected by the lack or loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease.
The fact that there are often no existing effective cures adds to the high level of pain and suffering endured by patients and their families.


Common problems faced
The lack of scientific knowledge and quality information on the disease often results in a delay in diagnosis. Also the need for appropriate quality health care engenders inequlities and difficulties in access to treatment and care. This often results in heavy social and financial burdens on patients.
As mentioned, due to the broad diversity of disorders and relatively common symptoms which can hide underlying rare diseases, initial misdiagnosis is common. In addition symptoms differ not only from disease to disease, but also from patient to patient suffering from the same disease.


How can things change?
Although rare disease patients and their families face many challenges, enormous progress is being made every day.
The ongoing implementation of a better comprehensive approach to rare diseases has led to the development of appropriate public health policies. Important gains continue to be made with the increase of international cooperation in the field of clinical and scientific research as well as the sharing of scientific knowledge about all rare diseases, not only the most “recurrent” ones. Both of these advances have led to the development of new diagnostic and therapeutic procedures.
However, the road ahead is long with much progress to be made.

Get involved!

The FPIES Foundation is participating in Rare Disease Day all week!

About FPIES

When we began this journey, in the spring of 2010, the resources were few.   What is this FPIES?   When you looked it up online, the top posts were Kids with Food Allergies FAQ, BabyCenter FPIES support group, blogs, and Jacks YouTube video, alongside the dozen or so medical journal articles.  Of course this was all very useful and helpful information for us.   I read it all.  I started with the medical journal and research articles while we were still searching for little man's diagnosis.  I read as many as I could, and shared them with little man's pediatrician- who also read them to help us.   I looked up and read through every reference listed on these articles and read those as well- learning as much as I could about this immune and digestive allergy.  I then joined the support groups, and found a home among the moms on babycenter.   If you were to go back to May 2010 when I first joined, you would find dozens of my posts with question after question as I then tried to learn beyond the research and journal articles and into the every day aspects of this allergy from those living it every day....this new life we were learning to cope with for our son's benefit.  I learned from the other families, following what they were learning along their own journey's.  I learned what was similar to our experiences and what differed in our little man's FPIES.   I learned the importance of individualized care plans.  I learned that our little man has more chronic FPIES, and what we call "build" reactions before an acute reaction is observed, and I shared these experiences and heard them echoed among dozens of families.   I then began, like the families before me, to pass along what I had learned for our son.   


Maybe it was because of our struggles to find practitioners experienced in FPIES to help us with our son's FPIES or maybe it was the healthcare professional in me, but I couldn't help but see this from both sides- from both needs- medical professionals need support and shared experiences just as much as the families to help other families.  I began to see how useful it would be to have the information- this golden information in this amazing support group that I was learning so much from- to be collected, compiled and centralized not only for the mother in the middle of the night searching for answers, help and support but also for the medical professional to find a resource to turn to to help these same families. The support groups are a safe and comforting place for families and it is truly an amazing thing to be a part of- the families in these support groups are like no other community I have belonged to, the passing along of information, experiences, insights into what they have learned and observed and connected for their child, in the small hopes that it could help another new mom whose journey is just beginning, or a mom who has hit a bump and is struggling, or someone looking for a new recipe or tips to coping with this chronic illness. 


A clinical diagnosis can benefit from a collaboration of experiences, a foundation for FPIES.  And now, when you look up FPIES, the resources are many and growing.   Now, you can find an easy to read and understand (and share!) article About FPIES.  

About FPIES

A Collaboration Between The FPIES Foundation's Board of Directors and Medical Advisory Board

Food Protein-Induced Enterocolitis Syndrome (FPIES) is a type of food allergy affecting the gastrointestinal (GI) tract. Classic symptoms of FPIES include profound vomiting, diarrhea, and dehydration. These symptoms can lead to severe lethargy, change in body temperature and blood pressure. Unlike typical food allergies, symptoms may not be immediate and do not show up on standard allergy tests. Furthermore, the negative allergy evaluation may delay the diagnosis and take the focus off the causative food. Nonetheless, FPIES can present with severe symptoms following ingestion of a food trigger.
FPIES Common Symptoms:
There are two ways that infants or children with FPIES might come to medical attention.
		1. The classic pattern of an FPIES reaction is when a healthy infant or child develops symptoms shortly after eating a food. There is a characteristic delay of 2-3 hours before onset of severe and repetitive vomiting and eventually diarrhea. The child may appear very ill and sleepy (lethargic), and may become pale or blue. When evaluated by a doctor, he/she may be found to have low blood pressure, seem dehydrated, and have blood tests that mimic infection (sepsis); which in some cases can lead to sepsis-like shock. Many infants who are eventually diagnosed with FPIES are initially suspected to have a severe infection or sepsis. 2. The second common pattern of FPIES reaction symptoms occurs when infants who are ingesting a problem food (usually milk or soy-based formula or proteins in breast milk) as a consistent part of their diet might experience increasingly severe vomiting, diarrhea, and poor growth, possibly progressing to an illness mimicking a severe total-body infection. Please note that each child is unique and your child may experience their own range and intensity of these symptoms.
FPIES Common Triggers:
In the first months of life, FPIES reactions are most often caused by cow’s milk protein formula, and sometimes by soy. Proteins in breast milk may also cause symptoms in some infants. For infants experiencing FPIES with solid foods, rice and oats are the most common triggers. Current research reports other common triggers that include, but are not limited to, milk, soy, barley, poultry, peas, green beans, sweet potatoes, and squash. However, any food protein can be a trigger and some infants may be sensitive to other foods as well. In addition, some children may react to one or two foods whereas others may experience reactions to multiple foods.
FPIES Diagnosis and Testing:
FPIES is a non-IgE food allergy, which unlike classic food allergy, cannot be diagnosed with readily available food allergy tests such as skin prick test (SPT) or blood test that measure food IgE antibodies (RAST). These tests are helpful to identify triggers for typical food allergies that result in immediate hives, wheezing, and swelling and are characteristically negative in FPIES. An FPIES diagnosis is usually made by considering the history of the characteristic symptoms and exclusion of various alternative illnesses. A medical doctor, often an allergist and/or gastroenterologist, should be involved in making the diagnosis. Although Atopy Patch testing (APT) is often used for FPIES patients, it is not considered a validated test for FPIES diagnosis. Blood tests performed during a reaction may be helpful since the results often mimic the body’s response to infection. The most definitive test is a medically supervised oral food challenge (OFC)-where the suspect food is given to the child in a controlled clinical environment. An oral food challenge, however, is not often needed initially if the doctor has excluded alternative illnesses and the medical history is consistent with FPIES.
FPIES Treatment and Course:
FPIES reactions can be severe. It is important to get to prompt medical attention where treatment, such as fluids given into the vein to help stabilize blood pressure and treat dehydration, can be given in order to avoid sepsis-like shock. Although some doctors prescribe epinephrine to stabilize blood pressure before medical treatment, the main therapy is to get intravenous fluids; also steroids can be used to quell the immune reaction. Preparing a letter for potential trips to the ER, containing both FPIES information and a list of your child's triggers, may be helpful. Unfortunately, there are currently no simple tests for FPIES. The primary test, as mentioned above, is a medically supervised oral food challenge with the trigger food. The good news is that FPIES usually resolves with time.  Your child will need to be closely followed by his/her doctor to discuss what foods are safe to eat and when it may be time to determine if FPIES has resolved. With proper medical attention and a personalized dietary plan to ensure proper nutrition, children with FPIES can grow and thrive.
		Additional Useful Resources 1. Caubet, J.;Nowak-Wegrzyn, A. Current Understanding of the Immune Mechanisms of FPIES. Expert Review.Clinical Immunology. 2011; 7(3), 317-327. 2. Jyonouchi, H. Non-IgE Food Allergy. Inflammation & Allergy. Drug Target. 2008; 7(3): 1-7. 3. Nowak-Wegrzyn, A.; Sampson, H.A.; Wood, R.A.; Sicherer, S.H. Food Protein-Induced Enterocolitis Syndrome Caused by Solid Food Proteins. PEDIATRICS April 2003; 111 (4): 829-835. 4. Sampson HA, Anderson JA. Summary and recommendations: classification of gastrointestinal manifestations due to immunologic reactions to foods in infants and young children. J. Pediatr. Gastroenterol. Nutr. 30(Suppl.), S87–S94 (2000). 5. Giovanna M., et al. Food Protein-Induced Enterocolitis Syndrome by cow’s milk proteins passed through breast milk. The Journal of Allergy and Clinical Immunology. March 2011; 127 (3): 679-80.

News Article

I have been behind on my blogging recently, the main reason has been the "push" trials.  I utilize this blog to share my perspective on our son's FPIES- the struggles, the accomplishments:  the journey.  It is difficult to gain perspective in the middle of the muck....the muddy waters of trials, symptoms, reactions - some that follow FPIES, some that are more mysterious as we push through, some that we stop because food just shouldn't make a little boy this sick.  Perspective is a struggle on those days, but it comes. 

A few months ago, we had a fundraiser awareness event for FPIES and to benefit The FPIES Foundation. I contacted the local paper and asked if they would want to help raise awareness for the fundraiser. They not only helped advertise for it, but offered to do a full awareness article About FPIES.  It even made front page news!   The writer did an excellent job in helping us raise awareness, he "read" me well in that I don't like to over-dramatize for any degree of sympathy but to provide information, raise awarenes, even foster empathy....

The reporter did a two part article spread, even putting Little man's picture on the front page! 

"A Search for Food Samuel can eat" and "A happy child with a chronic illness".  The article was done to raise awareness on what it is like for our Little man, who has a complex case of FPIES, to help raise awareness for this little known and often misunderstood diagnosis.   

The reporter did his homework, which I was grateful for.    He explained that little man "has a condition called "food protein-induced enterocolitis syndrome" (FPIES). He is basically allergic to the proteins in foods, including plant and animal proteins....a taste of food his body can't handle and it can be days later before he returns to normal...include pain, severe discomfort and sleep disruption... makes it particularly hard to get him the nutrients he needs. His mother, a registered dietetic technician, is thankful for her training in nutrition."

FPIES Fundraiser at The Pizza Ranch!!

I am always looking for ways to increase awareness on FPIES.  Not that everyone all over needs to know all the nitty-gritty details and in and outs of the allergy, or should ever know the ins and outs and all around of it.   I don't ever expect others to cater to my son's allergy or change the world because of it; or give us any degree of sympathy (in fact I'd prefer if sympathy was left for other diagnosis).   What I do look for is raising awareness of the diagnosis itself, so that if someone were to hear of intolerance's of this nature in an infant, they would have a path to look down when ruling in or out a diagnosis for treatment plan.  I also look to raise awareness in the community we live in, not so people would cater or be sympathetic, but that people can have empathy to the needs of caring for a child with a chronic illness that involves food- many foods.

This past spring, my sister held a benefit for our little man.  It was extremely successful in that it raised a lot of awareness in our home town community, 3 local newspapers did articles, people wrote to us from reading those articles, and of course people attended the benefit to meet our little man and ask their questions and learn about what FPIES means to him, and our family.   At that same time, in the spirit of raising awareness, I also booked "Tip Night" at a local Pizza Ranch to raise awareness in the community we live in now.  Unfortunately, we had to reschedule that as Little Man's needs were too high at that time, so we postponed it for this fall.   It became scheduled for Oct.24th.   Of course little man's needs have not slowed down much, but I decided we needed to go ahead with it anyway.  We were blessed to have friends that were able to help- help advertise it and help work at it; because little man was actually in the hospital the week prior to the fundraiser!

The FPIES Foundation helped in making an announcement flyer for it, that a neighborly friend helped hang up around town.

It was a great event.  Pizza Ranch has a program built in for non-profit fundraiser events such as this.   It is called "Tip Night".  You bring the waiters, you earn the tips.  

I set up an informative table including a video tribute of Little Man's FPIES slideshow, some other informative FPIES print outs, and an outline description of FPIES I wrote. Of course, displayed was little man's safe foods.  I also decorated the tables with little FPIES tidbits.  It was a successful night!! 

Fully Rely on God

Monday was a very long day- but ended well because all 4 of my children were sleeping under one roof. Little man got dismissed (finally) at around 2:30pm, I had a few quick errands to run, get boys home from school, and then try and unpack and get settled in while making dinner, we also had the home health nurse come by and teach us what we would need to know for hooking him up to his IV nutrition- it's all kinda simple actually and kinda neat that all his equipment fits into a backpack size bag- why can't they do that at the hospital instead of the darn pole?! We choose when we want him hooked up, just knowing he will be hooked for 12hrs. So, we're doing it overnight.

The day had gotten so long, and I was so weary. I even went to bed "early" (9.30)- just didn't have any more to give, my babies were all sleeping, so I gave everything to God- assured that I would wake up refreshed and renewed, that God would give me the strength to keep fighting this fight....to keep fighting for our Little man's voice, and not only his voice but the voice of so many other kids who experience many of the same symptoms he does with foods- symptoms that don't fall into where the research has been for FPIES, symptoms we're not sure if/when the research will cover; but more and more I read and learn about these symptoms being recognized and tied together.   I am hopeful.   Research takes years, and it takes multiple studies to create evidenced based medicine from. FPIES research will benefit most from multiple Food Allergy Clinics and Research centers as well as published papers from physicians learning about this horrible food allergy.  It is comforting to know that there are already food allergy clinics all over this country, doing active research right now. Doctors all over the country (and world) are learning more about FPIES, and really good and compassionate doctors are recognizing they need to learn even more. I continue to be in awe and amazement over the compassion so many good doctors have with this illness. 
FPIES children now can, and do, teach doctors just as much as research will in the future and we can be their voice to help.  That has been a piece of my "fight" for my Little man's FPIES for quite some time....when some doctors shot us down turn after turn, after turn- telling us he wasn't really "that" sick, or not sick at all, or even suggesting on multiple occasions that it was just me- even trying to see if his daddy would tell a different 'story'- because it really couldn't be that bad with the foods we were trying to give him, or the formula that 99% of kids tolerate and grow and thrive on.

I believe God is giving me this learning experience, (with my mouth and resolve) to use our experiences to help other children. I believe I had a "calling" to the nutrition profession, for my boys. I believe if we maintain our resolve, we can help our physicians learn one by one, about this horrible diagnosis. Personally, my resolve is to take it a step further, hearing the voices in the support groups I have been a part of (and have become a part of me), into my work with The FPIES Foundation. These kids and families need the help now, the research needs to come from as many Food Allergy clinics as it can, and of extreme importance- the awareness needs to be raised....not only to the existence of FPIES so that every practitioner that has heard of it thinks they understand it from the research that is out so far; but that they hear from the voices of the children living through it right now....that voice can be unified and magnified in The FPIES Foundation....a place for support, education and empowerment.

Now, why did I name this FROG's?  My 4yr.old's first day of preschool was yesterday. The concept they learned was FROG: Full Rely On God. It was the message I needed. A gentle reminder that He is in care of everything. "....above all, remember....act as if everything depended upon you, and pray as if everything depended on God" (SH Payer). I pray everyday (and continue to ask for prayers from everyone) to give our Little Man the health he needs to thrive, and his daddy and I the graces for strength, wisdom and resolve.
Full Rely On God....simply concepts, vast meaning.