Feeding Tube Awareness Week: Grateful for our Hardest Decision

For Feeding Tube Awareness Week this year I wanted to share something I wrote last year. I wrote it for a fellow FPIES mom friends website, Awareness Critters, to raise awareness to both rare diagnosis and tube feeding. 

I want to share how much having a feeding tube has positively impacted our son’s life.

The decision for our son to have a feeding tube has been one of the hardest decisions we had to make for any one of our children.  I want you to know, our choice to proceed was the best choice we made for the health of our fourth son who was born with a rare condition called Food Protein Induced Enterocolitis Syndrome (pronounced “F-PIES” for short).

Having FPIES doesn't mean he has to have a feeding tube, but he does.  Having FPIES does mean that he has a delayed food allergy condition. There are no tests for this type of food allergy and the only cure is to avoid foods that trigger this delayed allergic response.  Some babies/children are allergic to 1 or 2 foods, while others (like our son) can be allergic to multiple foods which can further limit the diversity of the diet. Making things more complex for him, foods like soy and corn; which our son is allergic to, are in/on so many foods (sprays and waxes on fruit, can linings, plastic materials, animal feed, preservative and additives, etc) which makes his variety of safe foods became even further limited.

FPIES is a rare and often misunderstood diagnosis and, seven years ago, when our son was first diagnosed, much less was known as we searched for best options to fit his needs – to provide the him nutrition to thrive and grow, nutrition that he wasn’t allergic to.  It was a constant balancing act that we were struggled with everyday.

Before he turned 3yrs, a feeding tube was discussed by his medical team for months as a means to help him thrive, and despite not currently having a safe formula to put in the tube, it was hoped that it could provide him with some consistency to escape his cycles he was trapped in due to his allergies and limited diet. The cycle of: not enough nutrition, trialing a food in hopes of finding nutrition, inflammation causing colitis, pain from the reaction; and malabsoprtion leading to anemia, low blood sugar and acidosis, vitamin deficiencies, and weight loss.  Keeping him further trapped in the cycle was not enough nutrition to make up for the malabsorption resulting in weight loss and further anemia, vitamin deficiency, and other unknown internal disruptions to his body.  And repeat with each food trial, each failed food, each accidental exposure or ingestion.  

A feeding tube should have been an easy decision. But, would it really help him?  We knew if it would not help his allergic condition (FPIES) but they assured us they were confident it would help him, somehow.   The final decision was left to us. 

No one would tell us this was the right decision.  We knew the odds were that it would help him; but having a tube doesn’t make allergies go away or less allergic to your allergens; so how could it help him? We were going through so many emotions….

We decided to proceed forward, a large part of the decision now was because he was currently on TPN (Total Parental Nutrition) via an IV line in his chest.   Trapped in that viscious cycle was a little boy who still had to enjoy eating and he was losing that battle, he had begun to refuse foods that provided nutrients he vitally needed; combined with villi damage from food trials left him needing TPN.  But, after 8 mo. on TPN and before committing him to a port for continued and long-term TPN, his medical team wanted to trial one more formula and we would do this through an NG Tube which would be his first tests of how his body would handle enteral nutrition.  We always remain hopeful that his body will accept the nutrition it needs but after a few weeks on this formula it became clear that even though he was not having a typical acute FPIES reaction to the formula; his body was not accepting it (initially by his outward demeanor, pallor, and sensory flares and then later confirmed by inflammatory markers in his blood and stool).  We still don't full undestand this reaction to the formula but by this time, we had already committed to the G-tube and moved away from TPN. What would we do now?  Had we made the wrong decision?

It was a difficult time, our little boy was hurting and he needed nutrition.  We decided to begin moving forward with a blended diet of his safe foods to start, with the hopes that his nourished body would begin to heal itself and, with nourishment we could slow down his food trials to the pace his body needed for recovery between trials and we could, hopefully, slowly, add more foods as we expected to do when he was first diagnosed.  He fell into a viscous cycle and now his tube could break him out of this!  We had hope! 

It has been a slow process but we have been able to add a few new foods -- to his diet and his blenderized feeds - every year since then, filling in his nutrition.  And, along the way, he thrived. 

Having a G-tube with safe nutrition allowed us to finally not have to worry as much about his daily caloric intakes, how we would coax him to eat enough, doing ‘dream feeds’, staying home to prepare his foods safely and fresh.  And it allowed us so much more.  For the first time in years, we were able to keep his blood sugars stable, he started to sleep through the night – not waking up hungry, and he gained weight and, in time, it helped with his severe anemia.  We relaxed around meal times, allowing him to eat his safe foods for pleasure.  We relaxed our schedule at home, not having to plan the day around when, where and how he would consume his few safe foods. This allowed us to do more things outside of the home and expose him to more of life and less of hospitals.  He has truly thrived.  We are truly grateful for this hardest decision.   

Nutrition Care for FPIES

This is very near and dear to my heart, nutrition in FPIES.   The FPIES Foundation is doing a webinar on October 25, 2016 for Nutrition Professionals.  To learn more and register, go here.

Raising Awareness during Food Allergy Awareness Week!

In honor of Food Allergy Awareness week this year, I contacted our local news station, after seeing that the same network had done a short story on our friends in Massachusetts, I inquired if they were interested in hearing more about living with this rare food allergy called FPIES.  They were more than happy to help us raise awareness and provided a nice short piece, spotlighting Little Man.  You can view it here: Rochester boy suffering from rare food allergy helps spread the word.

FPIES: Simple Words, Complex Diagnosis. Food Allergy Awareness Week 2015

God Bless the Farmer

This season is a season to be thankful -- Thanksgiving, Advent, Christmas, and a New Year on the horizon.  I would love to say that Little Man had outgrown his FPIES or at least advanced his diet beyond his dozen foods but that is not God's will at this time.  However, God gives us the graces to get through our trials and He never breaks His promises to provide.  "Give us this Day or Daily Bread" is not just a line in a prayer, it is a promise from Above.  A promise that He will provide.  God has provided our family in so many countless ways, some I have recorded either here or shared in other places, some I hold simply in my heart but not a day goes by that His graces are not showered upon us through any struggles that are sent our way.   

One such powerful and life changing grace has been the pork Sam has had 'safe' for 2 years now.   A farmer referred to me from a friend as someone who cared for her animals and raised them naturally, not feeding them corn or soy.  A farmer I picked up the phone and explained Little Man's sensitive allergy to and who took the time to explain every step of the process from raising the hogs to interviewing the butcher in how the meat is processed.  A farmer who I have visited right at her farm and who Little Man has met.  The Farmer who makes sure before all her meat is sold, that there will be enough for Little Man.  A farmer who cares.  This pork, pureed into a liquid enough to go through his feeding tube, has been instrumental to his thriving, his not needing a hospital stay since his feeding tube was placed, his getting to be a boy discovering the world at the pace of any other 5 year old, not disrupted by frequent doctor visits, hospital stays, sick days and therapies.   He still has reactions to foods, symptoms from other foods, still needs to avoid more foods than he can safely eat; but we are so thankful for how far he has come and for each and every one of the few foods he does have to provide the nutrition he needs to grow and thrive.  One of those foods being the pork from this farmer. 

God Bless the Farmer. 

To see more about Little Man's story and Traeger Hills Ranch, watch this video I created last year as a tribute to this farmer: 

A Blenderized Diet for Tube Feeding

Little Man has a G-tube.  This tube was surgically placed in his stomach in March of 2012, by the fall of 2012, we were beginning to use it for his blenderized feedings...."feeds" as we call them.  His safe foods get blenderized with a commercial grade blender and this is his 'diet' - his 'safe' diet.  This is what assures he thrives.   A blenderized diet has become a necessity for him due to his multiple allergic 'triggers', his corn 'trigger' being the most detrimental to his ability to tolerate pre-made, complete nutrition, formulas.  His FPIES triggers from minuscule amounts of his allergen - from contamination to trace ingredients, to hydrolyzed proteins.  All result (for him) in severe inflammation, and often villi damage, in his intestines causing malabsoprtion of nutrients.  A bit counterproductive to achieving optimal nutrition for growth.  A blenderized diet of his 'safe' foods- foods that his body accepts as nutrition instead of perceiving as an invader (as the body is capable of doing with this allergic syndrome called FPIES).

I wanted to take this week of honoring Feeding Tube Awareness Week, to provide a peek into what his blenderized diet looks like.

It starts here, well- it starts at the store or from our farmer supplier but here is where his daily diet starts.  A freezer full of foods ready to be prepared for his 'feeds' (or 'blends').   This is mostly peaches.  Processed and purred to be ready to be defrosted and then added to his daily feed. Peaches are a safe food for him but not shelf stable, canned, jarred or other prepacked frozen peaches.  All of those peaches have additives, additives that cause Little Man to have symptoms.  So, we get the safest source- fresh from Georgia in early summer.

 The top of the freezer is some foods we have purchased, and have planned 'trials' for.  There is also some papaya in there- that has been off and on "safe".   Papaya itself is safe but papaya (among other tropical fruits) are frequently 'gassed' to help in their growing and that 'gassing' is where corn is introduced and we have seen symptoms that disrupt his quality of life from even this seemingly small amount of corn, so we have to limit how much we give him and ration it when we feel his body can handle these symptoms -- he tolerates papaya itself and it provides Vit.C so we find ourselves bargaining with FPIES this way some times.  But that is another post, for another day.   Today, we're talking about his blenderized diet for his tube feeding.

On the bottom of the freezer is his safe pork- ready to be roasted in the crock pot (as pictured to the left). We purchase a half a hog at a time, and have the butcher process it into varying size of bone-in roasts.  I leave the bone in for the roasting time and I give it a long roasting time to help some of the components of the marrow to leach into the broth that I use for the liquid of the blend. These nutrients provided in the bone/marrow are providing Little Man with some essential nutrients he can't otherwise get (doesn't have enough safe foods).

Looks yummy huh?  His brothers tease that it looks like a chocolate milkshake! Not quite....

There are several reasons for a blenderized diet, it has several advantages and a few disadvantages and may not suit everyone.  It is perfect for our Little Man, and it is what is keeping him thriving. We are grateful for his tube to provide his much needed nutrition this way.  I am daily reminded of this and, during Feeding Tube Awareness Week, I honor this means of providing optimal nutrition to keep this little boy allergic to so many foods, thriving.

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.

Corn Allergy

Little man has multiple FPIES triggers (the food protein that triggers a reaction/symptoms); however corn is his worst and it is the most difficult to avoid.   Corn is in so many things.

I often get questions on where to start, or what to avoid.   So, I wanted to have a specific reference list for places that are my 'go-to' for corn sourcing, I added a Corn Allergy page (see tab above or link here): http://fpiesmudpies.blogspot.com/p/corn-allergy.html

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. 

Once cooked and Twice Fried Potato Coins

Little Man loves crunchy things, always has. Part of his oral aversions and sensory issues? Maybe, maybe just part of his personality.  He enjoys a nice crunchy fry, and for some reason- he prefers them in 'coins' rather than strips. I was making them batch by batch for him, until I saw what this mom was doing with her real food french fries. Great idea and since adapting it,it is one of our most "convenient" food items! Little man loves his with lots of sea salt too!

"Once cooked, twice fried, potatoes coins", frozen and ready for their 2nd fry 

The recipe is linked above, but in case you missed it, here it is again: French Fries

Allow time to process, and other tips to thrive...

April is "Caregiver Mental Health Month" at Complex Child E-Magazine.  A fellow FPIES mom (Cradlerocking Mama) wrote a great article about her Tips to Thrive for Parents of children with special needs.  I also recently wrote an article for their tube feeding awareness segments in February (Overcoming The Small Percentiles: Our Super Tubie).  It is a great e-magazine where parents submit real-life experience and insight articles to share among other families that have children with complex diagnosis.   FPIES is complex just from the shear nature of it, no test can define it, no test to find out what foods your child is allergic to, and then there are differences in how acute and chronic FPIES presents.

Insights and experiences on different and new ways to cope with this rare, and often times complex, allergy are shared graciously among the other parents going through this with us. There seems there is always something new to learn, even if you are expected to be a 'seasoned veteran". I remember the seasoned veterans on the babycenter boards when I was first logging in, how much more sure of themselves they seemed.  They had learned to trust their instincts, go with their gut, follow their child's lead, learned life outside of the restrictions that FPIES can initially put on your family/lifestyle.  Now, armed with the skills and tools needed, they were on to thriving with the new knowledge gained and new perspectives, but graciously continued to come back to the groups to share their insights and experiences, and even their continued frustration of some new challenge that was needing to be overcome.  I remember well something a fellow mom had said one day that stuck so well to where I was at the time....give yourself time to process. Allow time to process through the new stages, the new information, the changes that may need to be made in your home or lifestyle.  Not in a negative way, but in the 'give yourself time to process' and find your way to thrive scope. Give yourself time.  That is what I would add to CradleRocking mama's list.  When faced with a new diagnosis of any kind, or any stage in the journey, it is ok to give yourself time to process; allow yourself that.

Homemade Chocolates

I was thrilled to find this Homemade Chocolate recipe.  Before this, I had not tried cocoa butter; but it seems to be going ok for Little Man- although it does make the chocolate candy much more rich than the maple syrup chocolate candy I have made in the past. 

My adapted recipe from Real Food Forager:

Ingredients:

1/4 cup Cocoa butter 

1/4cup Cocoa powder

1 Tbsp. Pure Maple syrup

Directions: 

Prepare a double boiler, using a small sauce pan to melt the cocoa butter.  The cocoa butter should be warmed over a double boiler just to melt it, do not boil (it will get bitter!).  Once the cocoa butter is melted, remove from heat and add the maple syrup, then whisk in the cocoa powder.  Pour into molds.  Makes ~12 medium sized candies (with enough left in the pan to "lick the beaters"!.  Put the molds in the refrigerator until solid.   Remove from mold, let sit on counter to 'dry' - this helps them not melt as fast when handled by little fingers to eat.  May be stored in fridge - if there is leftovers!  It is a rich, dark chocolate candy.  

Hot Hot Cocoa

Once cocoa was passed, we experimented with ways to make homemade treats (chocolate maple candies, homemade chocolates, and hot cocoa).

I discovered the recipe on a home made chocolate 'flop' - everything happens for a reason and we keep tweaking the measurements to have a chocolate "syrup" on hand.  I can then mix the syrup with water (or a safe milk, little man prefers water for his hot hot cocoa), and make hot cocoa.

Little Man coined it "hot hot cocoa" and loves that he gets to have a cup of cocoa when he comes in from the wintery cold, like his brothers!

Ingredients:
2 Tablespoons Pure Cocoa Powder
3-4 Tablespoons Pure Maple Syrup

Pour maple syrup in small saucepan over medium heat, mix in cocoa powder with a whisk.  Heat until all cocoa is dissolved and just before maple syrup boils (boiling maple syrup will begin to change it's makeup- and you're on your way to making candy, but that is another recipe!).   Remove from heat, and pour into container to store in refridgerator.   Mix 1-2tsp (or to taste) of chocolate syrup with 2-4oz. of warmed (safe) water.  Serve warm in favorite mug!  Enjoy!

Remember being new to FPIES?

Do you remember being new to FPIES?  I do. Our son wasn't diagnosed until he was just shy of his 1st birthday, and those months prior were some of the longest, most stressful and anxiety filled months we have endured.  Little Man is now 3.5yrs.old, FPIES is no longer a new diagnosis. We are versed in the changes that we needed to make to keep him safe, to learn about his allergies, to trial foods, and get support, to help friends and family understand and support us by respecting our sons needs. FPIES is still a big part of our Little Man's daily life as although his list of safe foods is growing,  his list of avoiding foods is still long enough.  

Recently, Little Man and our family got to meet another FPIES family who were in town receiving some further consults on their son's complex FPIES.  Their son has no known foods he can tolerate at this point. He survives, and thrives on an elemental formula for his sole nutrition. He is 3.5yrs. old, just a few months younger than Little Man. They were instant friends. They both noticed right away that they shared 'bobbles' (they both said bottle in the same cute way!).  And although it wasn't a big part of our meeting, they did both recognize that they shared "food makes my tummy hurt"'; which may not seem like a 'happy' thing to share- it is their reality, so having others to share that with is important for them.  

Little man has met other little friends with FPIES, but Little Michael had not. Little Michael had only recently even received the FPIES diagnosis (just before he turned 3yrs). His family had been managing his allergies under "multiple food protein intolerances" and since he was thriving on elemental formula since 4mo.old, and no one knew why food caused the symptoms they did- they were alone.  They were alone in trialing foods, alone in keeping him safe, alone in trying to have others understand, and explain to their growing son why he couldn't have food, they tried foods here and there- hoping and praying each time that they could find something that didn't cause excessive and irrational screaming, violent vomiting and days of diarrhea....not to mention how some foods also caused edema-like swelling and hospital stays. 

So, what would you say to you if you could go back to those first months of the diagnosis? What things helped you understand the most about FPIES?  What helped you cope? What helped you with food trials? What helped you help family and friends understand the magnitude of this allergy? What things helped you feel less alone?  

 These two boys share so much, and they knew it. 

Feeding Tube Awareness Week 2013

I recently wrote this article (also below) Complex Child E-Magazine; Overcoming the Small Percentiles: Our SuperTubie.

Along with writing the article, I made this YouTube video to illustrate the story. I've been a little behind on updating this blog so this article will certainly catch up the 'highlight reel', I hope to still fill in the details with my journal entries at some point. But, in the meantime I wanted to honor Feeding Tube Awareness Week 2013, and Complex Child called for those wishing to share their experiences, to write their story. I wanted to share our story since it it is not within any "norm" - with starting on TPN, going to an NGT, and now a blenderized diet with a G-Tube (due to not tolerating any commercial formula's). Little Man's FPIES is complex, although we have yet to figure out exactly why- but we just keep moving forward in any ways that we can. Overcoming the obstacles in front of us as they arise.

Our son is our Super Tubie! Even though he is only 3.5 years old, he has been on intravenous Total Parental Nutrition (TPN), a Nasogastric Tube (NG), and now Gastrostomy Tube (G tube). Samuel has a delayed food allergy of his intestines called Food Protein Induced Enterocolitis Syndrome (FPIES), and since even before his diagnosis at age one he was overcoming obstacles of small percentiles. From the small percentiles he had fallen to on the growth chart...to the small percentage of children so allergic to corn that he suffered chronic FPIES to even hypoallergenic formulas...to the small percent (according to studies) that cross react to multiple foods (dairy/soy and grains)...to the labs that fell to small percents causing iron and Vitamin C deficiencies necessitating short and long term TPN...and to his latest obstacle overcome--going from reacting to formula and severe aversion to his own G tube, to accepting it, and thriving with the help of a blenderized diet.

IV Nutrition (TPN)

Due to his allergy to the corn syrup in all formulas, the decision was made at 18 months to trial soy. This caused inflammation and enteropathy with blunted intestinal villi (villi are the finger-like projections in your intestines that absorb nutrients). Intestinal villi take additional calories to rebuild, and do not break down and absorb nutrients well when they are blunted. The enteropathy could not be turned around without the extra nutrition and calories that formula (that he was allergic to) provides and thus led to his first course of TPN. An upper-arm PICC line was surgically inserted and we lived for five weeks in the hospital while he received TPN for 20 hours a day. Just past his second birthday, eight months later, the combination of no nutritionally complete formula, and repeated food trial fails causing more intestinal damage and further malabsorption, we found ourselves in another emergent situation of needing TPN. Weighing the risks of central lines and infections, and then deciding that his need for the nutrients to bypass his intestines outweighed all of that was not an easy decision. However, he was very sick following his latest trial, and we had to proceed with the TPN again. We didn’t know how long he would need to be on it since he needed replacement of his nutrients, regrowth of damaged intestinal villi and gut rest. Samuel remained on TPN for eight months while he continued to have his limited diet of a few safe foods. After months of gut rest, and through more food trials and fails, TPN provided his body and brain with the needed nutrients. It also taught us how much his immune and gastrointestinal systems functioned and was literally a lifesaver, even through a life-threatening line infection and sepsis. After a second line infection scare that ended up being an FPIES triggered reaction, and due to repeated intestinal damage and noticeable regressive behaviors, we needed to make the choice to convert to an IV port to continue TPN or challenge a formula in his gut. It was decided to challenge his gut once more with another formula, a corn-free formula with hydrolyzed milk protein, Alimentum RTF, in hopes that we could finally find something to supplement his tiny menu. This is when we moved to the NG tube.

Temporary NG

The NG tube was a temporary stop in his feeding tube journey, only four weeks. It was placed to challenge the Alimentum RTF because he refused to drink it, rather starving himself than drinking it. The NG was very hard on him, flaring his sensory issues significantly, but he kept it for the four weeks while we made the very difficult decision to have a G tube placed surgically. All his medical team encouraged us that this was the right decision, but that it was ultimately our decision. No one knew whether he would start taking enough by mouth within the next six months so that he would not need the tube. We feared it would take longer than that, and did not want him to have the NG tube for six months, only to end up with the G tube anyway. The NG seemed more difficult to maintain, and besides flaring his sensory issues, it was limiting his play. A G tube would become part of him and he could play and be a three-year-old during the day. Plus, he would have the back up for feeding that he needed throughout the day and night.

Deciding on the G Tube

I am a Registered Dietetic Technician. I know the benefits a G tube can provide. My head told me the G tube was the right decision; it made all the clinical sense for a child with these food challenges. However, I am more importantly Samuel’s mom, and my heart wasn’t following my head. I am very aware that so many parents whose children need G tubes do not even get to make a decision, so why was this such a difficult decision for us? Sam could drink from his bottle, but the nutrients in his hemp milk formula were not complete to pull him out of reactions that damaged his villi and caused further malabsorption. Our son can drink and chew, but doesn’t know how to eat to fill himself. Due to his limited diet and pain with eating, he also has a multitude of texture challenges and food aversions to overcome. And that’s when we find enough safe foods to even practice on. He does have a few safe foods, but his allergy triggers outnumber them by far. He does not have a healthy relationship with food. Samuel was no longer failure to thrive but only because we fought it so hard. He is developmentally on track; however, his quality of life is diminished because he needs to eat every one to two hours all day and night and suffers low blood sugar in between. As he gets older and his sensory issues progressed, he would only take bottles at home, warmed to a certain temperature. Feeding him was becoming more and more challenging, and not just for nutrients, but purely enough calories. We knew the G tube would provide him that back up he needed, to provide the calories (and hopefully missing nutrients) he needed in a day. It would allow him to grow, play, and thrive outside of counting calories, and it would increase his quality of life. We were also encouraged being told that 90% of the families that make this decision later state that it was the best decision they made for the care and quality of life of their child.

FPIES Flares

Little did we know then that Samuel would again fall into those small percentiles. The first eight months after tube placement were rough for Samuel, and for us as a family. We once again went into crisis mode functioning as a family, where all the focus was on getting Sam through his symptoms each day. We just weren’t sure what was going on. We saw signs of trouble while he was on the NG tube, but chalked it up to sensory issues and not the tube itself, or blamed reactions to the lubricant they used to replace it time and time again. He had an endoscopy done during the G tube surgery that showed chronic gastritis and duodenitis--inflammation, again. But, what was this from? The lubricant? An increase in stomach acid from the NG? Was it the formula that we thought he had “passed” because he hadn’t had an “FPIES vomit?” It would take us a few more weeks to figure out that it was the formula, and it was making him very sick, inside and out. He was becoming averse to having us even touch his tube. We switched to another formula (ProViMin) in hopes it was the carbohydrate source and not the hydrolyzed milk protein in the Alimentum RTF that he was reacting to. His inflammation diminished in some places and flared in others. This formula wasn’t going to fit him either.

Stoma Troubles

We decided to take a bold move and stop the formula as well as stop using the tube altogether. The tube site or stoma needed to heal. We had trouble with it from the beginning, and he just needed it to heal. He needed to heal. He had woken up from surgery with a fever and quickly developed bile leaking out of his tube. We were granted a few extra days in the hospital to assure it wasn’t some sort of infection. It quickly went from bad to worse and the granulation tissue began to grow from the constant seeping bile/stomach acid. His shirt would rub and it would bleed. He was in so much pain. We tried creams and then repeated silver nitrate treatments (to burn off the granulation tissue), and each time the surgeon’s office tried to assure us that the burning did not hurt, and each time taking more people to hold him down because he was fighting this so badly. We later learned that granulation tissue does hurt, that rubbing against it hurts, and that silver nitrate removal can hurt some sensitive people. It was enough; this was “make it or break it” time with this tube. We had a love-hate relationship with this tube, which was quickly becoming more one-sided. I knew he could benefit from it if we could get it to heal, and find nutrients to put in it. I was determined to make this work for him, knowing the possibilities of the benefits. Remember, Samuel can drink and swallow, but his hemp milk formula and tiny menu were not nutritionally complete. We could never advance his diet quickly enough to avoid nutritional shortcomings. Stopping the formula he was reacting to, along with stopping using his tube was a big gamble that we would end up back on TPN too quickly. It was not an easy decision but we decided to let it be, through the summer, to see if it would heal. We didn’t do a lot that summer--my schedule revolved around his bottle and caloric needs 24/7. It was very important to stay on top of the calories he could safely have to keep him above the line and give that tube a chance to heal. Within days of stopping formula that was causing reactions and intestinal inflammation, the granulation tissue disappeared on its own and has never returned! The aversion to having his tube touched, to even HUG me or have his stomach touching anything didn’t go away as easily. We let him guide us. We took time away from even talking about it--taking a bath cleaned it well enough for us to leave it be--and hope for the best. My instincts were telling me that if we pushed him into using it, he would reject it altogether. Before stopping using it, he had gotten so hateful of it, even trying to pull it out himself! It hurt him so badly that he couldn’t even hug me. That didn’t seem right to me at all and was one of my last straws. I knew it shouldn’t be causing this much pain. People live with them every day and can hug others without pain.

The Blenderized Diet

What was my goal with a healed tube but no formula to put in it? Use the tube for a blenderized diet. This fall, once I felt Samuel was healed and beginning to accept his tube (our Mini Buddy helped with that!), we had home health care services come out to empower us to help him. Within a few visits and the nurse’s help and guidance, we were slowly able to get him more comfortable with his tube again. He accepted that it was part of him, and that it was there to help him grow big and strong. I began to use his G tube for his hemp milk and safe foods, blended by my Vitamix blender. Day by day, he lets us use it more and we are able to get his needed calories and more of his nutrients in daily. His menu is growing and we’re adding in the new foods as they pass to his blenderized bolus feeds to assure his nutrition is consistent and optimal for further growth and development. We are also able to keep him hydrated during/after reactions and keep him stable through the day without the ups and downs of inconsistent bottles. He sleeps better and longer at night. His quality of life, in spite of his chronic illness, is maximized. He has overcome so much in his three and a half years. He is our Super Tubie!