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!

For when I am weak, I am strong....

"But He gives a greater grace. Therefore itsays, "God is opposed to the proud, but gives grace to the humble." James 4:6. 

I'm not a big 'scripture person", meaning I don't necessarily memorize or quote scripture but of course am familiar with passages and gospel stories and am reminded of them in so many area's of life, in the everyday.  God uses whatever means He needs to to speak to us- sometimes in the voice of our children, in the eyes of a small child, in the cry of a wounded soul, in the wake of tragedy are the times we are listening most for His voice-but He is always there.  I learned this as a small child, something my dear grandmother taught through her example. And it was impressionable on me. It was a gift-directly given from her but indirectly given from God....He knew I would need this gift.   

I came across this post today, "When you give up, and you break, you've made it.",from A Holy Experience on the heels of my last post trying to express what it feels like to be filled with graces, the graces to sustain, the graces to see the works before me, the graces to appreciate the painful days and even more so the graces to be so grateful and humble for the so.very.many.blessings.  

These words from the (above) post...."But here comes the upside, the so unbelievably bright side: when you are just done, and broken, and tired, you’ve made it.

You are now about to experience the most profound, amazing, life-altering, freedom and grace that will set you so free you are going to fly.

I mean it.

I mean it.

When you are broken enough and tired enough and angry enough that you just can’t mold yourself, fix yourself, do better, be better, when you are just done, grace is lavished on you like nothing you’ve ever experienced."

Wow. Wow. Read more, trust me.  Let the words wash over you.   

The title of the post isn't what grabbed my attention though.  I don't feel like I've given up- or that I am ready to.....but that doesn't mean I don't think about it when I am weak, or broken, or learning. 

What grabbed my attention in this post,was the first words...‘"I don’t want to be a servant –I want to be a Caroline.” So says the three year old wonder-child who humbles me as a parent and makes me think deeper about life."

My 3yr.old humbles me as a parent, too.  Last week, I was working on an article, and decided to also do a slideshow to illustrate along with the article (I love pictures!) for Feeding Tube Awareness Week 2013.  Little Man was watching the video with me, as I edited it.  We came to this picture:

And, he said- "mom, what's this" (pointing to the heart).  I said, "it's a heart".  He said, "no, this" (pointed to the same place). I said, "it's your feeding tube but inside is the heart, do you see it?".   He said, "no, that's not a heart- that is a kiss".  

Almost a year ago, he had that tube placed. Although I would say it was love- a symbol of love, of tough love at that time, but of love; I would not have said it was a kiss.  Today, through a multitude of graces, I know it is.  A kiss from an angel. A bridge to saving his life, to restoring health and quality of life in our little man. A way to get nutrients, medications, hydration in without constant chronic inflammatory reactions.

What strikes me from this post (above) is the first lines and how my own 3yr.old said those very words to me just yesterday. "I am not a supertubie, I am Sam.....I have a tube, see- right here (lifting his shirt and pointing to his gastric tube).  My tube is super. I am Sam".

Feeding Tube Awareness Foundation put a lot of thought into the Tubie logo, and it has amazing symbolism needed to bring compassion, understanding, empathy and most importantly, awareness to medically necessary feeding tubes. The word tubie in the logo was coined (and the logo trademarked by Feeding Tube Awareness Foundation) to bring the "human" to the tube (in the words from  Feeding Tube Awareness Founder for this awareness article on Complex Child EMagazine) "...logo embodies what we are trying to do.  Re-position tube feeding from something that is scary, icky and complicated to something that is friendly, approachable and beneficial--when it is medically necessary...... is why we chose the term "tubie" over something more clinical like "enteral feeding."  Words matter in communications..... The emotional connection is important, too.  It needs to be personalized.  The heart is pure tubie love."  

Beautiful. I thank Feeding Tube Awareness for this logo, this symbol of love.   


But in this instance, in a time when my mind is struggling with this chronic illness and the up and down effects on the quality of life of our family; it was simple words from a 3yr.old that reminded me of the importance of not naming the illness of a person.  The illness is not a person, the person has an illness.  The illness doesn't define the person, the person defines the illness.   Sam is a child with a severe food allergy of the gastrointestinal system, he has FPIES.  He is a child with FPIES.  He is not an FPIES child.  Can you hear the difference?   Medical Sociology 101: Do not define a person by their chronic illness.   Do not let a chronic illness define a person.   The medical field relies on the definitions and naming of an illness is to allow understanding of common symptoms, and to help define the illness by grouping symptoms.   However, in so doing, we risk taking out the individualism.  That very individualism that is needed in a complex subset of symptoms that ties together a syndrome called FPIES. 

Processing....Perspective on Graces received in 2012

Processing...a coping and learning tool I have learned to utilize and strengthen and allow myself on this journey with my son.   With processing brings perspective.

The past months have been a lot to process, the past years have been a lot to process but from long term TPN last summer-winter, followed by food trials (and fails), followed by a formula challenge, an NG tube, formula adjustments and building intolerance, a G tube, a new formula, an 8th formula fail, intestinal inflammation, an expanding menu, functional medicine practitioner, healing properties of broth, trusting my gut, occupational therapy, speech therapy, a growing and thriving little man in spite of all of his road blocks. It is always a lot to process as we learn on each new step of this journey.

If you're following my blog, or more so- the sequence of Little Man's journey, I am attempting a slew of catch up posts (backdated to keep the entries in order).   My postings slowed down around Feb.8th (yes, almost a year ago!) when little man was admitted to the hospital via the ER because of a fever for a potential line sepsis infection (when he still had a central line for IV nutrition/TPN) that turned out to not be a line infection (thank goodness!!) but instead confirmed FPIES reaction (fever, vomit, elevated platelets and leukocytes and neutrophils-with a left shift).  It was a very rough time for us, as a family- with little man's health and medical care, with needing better treatments from his medical team, seeking new consults and fresh opinions, needing a change of course and not knowing which path to follow.  I prayed. A lot. And, I can't say at what point it happened but a new growth- a new level of faith was graced upon me. God looks out for the birds and the crops- why would He not look out for Little Man?  In whatever path. Whether it be my chosen direction or not. As long as we follow His path, He will show the way.  I know that sounds "preachy" or "religious" (what does religious sound like anyway?) but it isn't meant to me....I can't quite seem to paint my soul - this faith that lies within.  This faith that is only possible through graces -- graces given as gifts, from Above.  Asking for graces allows Him to strengthen faith....not asking for Faith or expecting false hopes....you can't be given faith- you reach it with His grace.   So much processing, so many perspectives granted. I prayed for graces.  I needed them.

Graces to get through what we were to endure during those long months this spring and summer.  What Little Man was to endure. The grace to stand aside and let God lead (I had to pray hard for that one!).  The months to follow- through the above mentioned circumstances, were very tough. But, I was ready.  God had granted me the graces to get little man,and our family through another very hard time -- and (hopefully) come out stronger (and wiser?)...and on new paths. I will attempt to continue to update this blog, taken from journal entries over the year- in case there are others that would like to follow along our journey.

Strength from graces, shielded by Faith, we look forward to 2013.

Acidic Bile Vomit

The other day, I came across this picture....from January, a year ago.  I had washed it 2-3 times by the time I took this picture....and then threw it away.   The pillow looked dirty when it was clean.  I took the picture before I threw it away.  Why take the picture?  Because I am still in disbelief of how this vomit stains EVERYTHING! Before the FPIES diagnosis, or knowledge of anything FPIES- I threw away shirts with these same stains on them- both Little Man's and mine. I would throw them in the wash IMMEDIATELY -we always had a full load by the time the vomiting was done, all the towels it took to soak it up, the bed sheets, the clothes we were wearing, the washcloths used to clean up...and they would always stain.  The stains remain on the mattresses, the pillow themselves, as well as blankets and sheets we are not throwing away, and the some spots on our carpet....yellow vivid stains. A reminder when I change sheets of these long nights....

Bile vomit is very, very acidic. It stains everything. This pillow....this night...the vomit was scary. It made me think of all the times he was alone in his crib, not even waking up to vomit (the allergist who diagnosed him said this was indicative of shock- where they don't even...can't even, wake up to vomit).  This night, the story this pillow tells....a night in January when little man was (unknowingly) reacting to sunflower lecithin that had recently been added to his previously safe Living Harvest Tempt  Unflavored/Unsweetened Hemp milk.  It was 3 nights of green vomit around midnight before we figured out it was the hemp milk (that was previously safe when it did not contain sunflower lecithin).  This night, this last night before we discovered it was the sunflower lecithin  I had just laid my head down on the pillow next to him (hubby or I took turns sleeping with him while he was on TPN- IV nutrition, as his IV line was a central line, we didn't want him twisting and turning in the night and getting tangled in his lines).  I had just laid my head down and I heard this gushing sound...like the sound of the toilet overflowing. I jumped and looked towards the bathroom- expecting to see one of my other boys running out of the bathroom- trying to find help for an overflowing toilet.  Except as I sat up, I realized it was Little Man because he the gushing happened again- he wasn't even awake, barely lifting his head off the pillow to vomit this green substance.  I scooped him up and had him in the bathroom a few seconds later (right across the hall from his room) to finish emptying the contents of his stomach in the sink.   I just can't forget that sound....the gushing of vomit, and looking over at him to see his eyes not even open and more vomiting coming....FPIES sucks.

Why share this?   Why share this scary story?  Because this is the reality of an FPIES child, of an FPIES family.   The amount of vomiting that little man has experienced is not normal, not ok, not healthy.   The amount of vomit we have had to clean up, his brothers have had to watch him experience, we have had to help him through....all more than one child should have to endure for sure.  But all the stark reality of these children and families. Maybe this will change one day, maybe more will be known about the mechanisms of this allergic response and future generations will not have to go through so much....it begins with this, sharing our stories (yes, even the 'scary' ones), it starts with awareness of what FPIES is....

Who's on 1st?

I know, I am STILL behind on my blog.  A day goes by, a week, a MONTH and I have very good intentions of getting things updated- to share our journey, our experiences, to help those also following this diagnosis with their little one know they are not alone.  Maybe something we've done is something someone else is experiencing, maybe it would help someone trust their instincts, guide where to turn (Babycenter support boards or The FPIES Foundation website are great places to start!).

I've just been so busy, which I know we all are!   Little man's FPIES and complexities take a lot of research and creative endeavors, thinking outside the box, comparing 'notes' with other families, looking for additional specialists to help as we encounter new challenges or revisit old ones....

The other day, I was reviewing the pronouns "who" and "whom" and their correct usage (in our home school curriculum) and the famous "Who's on 1st" skit from Abbott and Costello came to mind.  I was excited to share this with my oldest son, who quickly caught on to their humor and we ended up watching a few other skits (thank you YouTube once again); and this one came up...."Hold the Ghost".

And all I can think of is how closely it makes me think of how FPIES makes one feel.  I was JUST talking to a fellow FPIES mom about this the other day- how it feels like you're shouting and no one can hear you, or talking a foreign language that no one understands and everyone just looks at you like you're crazy, or maybe even worse- with the deer-in-the-headlights look.  You are completely alone, you are spurting, banging the table, barely breathing, yelling in your head and yet- the words are not coming out, the sound is not even there.  Help me, someone help me....I'm so scared, my baby is having scary symptoms and is in pain...and I don't know why or what to do about it.  So, you wish you could just get out of this haunted place but there is no way out -- if someone could just help you read the map; so you're assigned someone to help you read teh map but they are strangers to this place too and can't quite read by this light, and again you find yourself spurting for words, gasping for breath....and then finally a burst of sound comes out and everyone is looking and the phenomenon settles down....and you look crazy.   And then, while everyone is watching closely for the phenomenon to reappear as you said it would, something else pops up in another place and again, you're left voiceless and grasping not only for breath to breathe but the voice to be heard.   And finally, someone nods their glance your way- and the phenomenon settles down again; and you are assured that someone else understands but do they really?  "Everything is alright".   And you look at the map again, and try to find your way....comparing notes with the others in the room.   One day, you'll find the way...

Which way are we going?

We have no new foods, and we have put ProViMin aside.  Something was causing full allergic colitis.   We started by checking labs and stools and correlating the ProViMin (increased and decreased) intakes to the results.  The first weeks it was evident something was going on but, just as we were left guessing with his symptoms and ups and downs, the labs/stools left us guessing a bit too....was it leftover from Alimentum RTF?  Alimentum caused full enteropathy: reflux, villi damage, decreased ability to digest sugars, large stools, dumping proteins, malabsorbing calories and blood in stools.  It did not cause the vomit issues we have seen with his reactions, so it was either something trace or broken down and it didn't seem to be flaring his enterocolitis.  But enteropathy is just as bad- just not as sudden.  It took us months to determine that yes, he was in fact reacting to the Alimentum.  I didn't want that to happen again so we were taking the ProViMin cautiously but so many good signs were there too, initially.   ProViMin has less broken down dairy (from hydrolyzed dairy proteins to a piece of a full dairy protein - sodium caseinate) and yet his enteropathy was flaring down, his body was beginning to absorb nutrients again and his hemoglobin that was declining had picked back up....but his iron stores tanked again and his protein stores were not picking back up.   Did we just need more time?    Did we just need to push the ProViMin more?  

So, we came back from camping and I pushed the ProViMin- anytime he was sitting down or started acting up, I would ask if he wanted a bottle; I would sit with him if I needed to get him to sit still and take a bottle.   We did dream feeds (where we feed him in his sleep) and he would wake up 1-3x/night to eat himself.  He was getting ProViMin around the clock.  Things should be improving if he was merely recovering from Alimentum.   

My theory was that while recovering from Alimentum enteropathy, his body wasn't fully accepting the ProViMin either.  My instincts were right.  

His body has been having allergic colitis from the ProViMin.   I'm not sure when that kicked in, or if it's been there the whole time because he did seem to be doing ok on it at first, but then he slowly began to get more fatigued and have poor color, he gets this subtle cyanosis around his lips when his intestinal inflammation is "triggered" - it comes and goes if he is getting the protein throughout the day (such as in his bottle); or it will flare up for a few hours if we are trialing a food.  It's beginning to be a good red flag for us....but I can't stop the food on just that alone, I (unfortunately) need symptoms to add up.  

When we got back from camping, we were turning in samples and going to the lab- one Friday's lab results revealed a "spike" in his normal- he had Eosinophils in his blood and his hemoglobin was dropping, Ferritin was quite low as well.  His stools from a few days (week) prior had a significant jump in the markers for inflammation.  Something isn't right.    The GI called and she was alarmed at the results and felt that it confirmed he was reacting to the ProViMin.  Her thoughts were that we needed to stop the ProViMin and get him scheduled for an admission to re-start TPN (total parental nutrition via an IV).   She has no other idea's on why his body can not accept food right now.  It is the answer that she knows will keep his body alive and his brain fed the nutrients it needs.  I know she is just looking out for his needs- both in the now (stop the ProViMin because it's hurting him) and in the future (provide nutrients via TPN so his brain doesn't suffer later); but I just can't help but ask myself if we are doing the right things...do we look further? Do we go somewhere else for 2nd/3rd opinions?  Do we put him through new tests and hospital stays and who-knows-what-else?  Or, do we just do what we know to do and stay home.    I don't yet know that answer, I've been praying and praying about it.  I just can't see through this muddy dark tunnel.   

For the immediate needs, hubby and I talked about it and we decided a few things.   One is that he wasn't as sick as he has been in the past and we still aren't sure it is the ProViMin.   He seems to be getting more and more corn sensitive, so maybe he got "corned" the day of the stool tests- his diapers that he has always been ok with are now causing rashes (diapers typically have corn starch in the liner, he has always seemed to tolerate Pampers baby dry) so we switched diapers and wipes (7th Generation diapers- tolerates MUCH better) and Waterwipes wipes...which are on the fence of tolerance but a significant improvement over the wipes I've been using with all the corn-y ingredients.   Also, a few days before the lab draw that showed the significant changes, he had had butter and a lick of yogurt (planned introductions to be "push" dairy to see if that is what he was reacting to in the ProViMin and both I had hoped from my research, would be corn free but wasn't positive), he also ate a good portion of pork (same night as the yogurt).   A few days prior to that, he had LICKED a paint brush while painting!!  No idea why he did that, took us completely off guard because he hasn't done that since he was a baby.   Any one, or all, of these things could throw these test results.   The GI was calling me on a Friday afternoon, before she was to leave town for a week with this news.   So, we decided it would be best to wait out the week- continue the ProViMin but do nothing else (no paints!) and see what the next weeks test results would be.  It was a rough week, giving him something we weren't sure if it was safe and that looked to be more and more unsafe but we also talked about doing an endoscopy before taking him off the ProViMin if the blood showed eosinophils again.    Eosinophils in the blood doesn't automatically mean EGID (eosinophilic gastrointestinal disorder) but it could and I don't want to miss this "snapshot" of his body telling us something.   We waited until the next Monday (when the GI doctor was back) to do the labs.  That morning, middle of the night, I gave him a bottle with an increased dose of ProViMin- timed so that it would be about 6hrs. before the lab draw....to see if the snapshot could tell us something, anything.    

The increased ProViMIn did not spike his eosinophils again, those returned to normal levels in his blood.   So, the spike of labs in that direction seemed more likely from the butter, yogurt, pork or paints- not from the ProViMin, so that was a relief.    But, this blood showed a drop in Neutrophils (white blood cells that during an acute reaction elevate but during a chronic reaction for him, they decline- like his body is fighting something and depleted (chronically).  He's even been on neutropenic precautions at the hospital before when he's chronically reacting (because these levels look like a little boy susceptible to every illness- a body fighting hard to keep those illnesses out that it depletes it's stores, chronically).  His hemoglobin did pick back up a bit but his iron stores continue to drop and his protein stores are not picking back up.   The blood in his stool samples continues to worsen but the inflammatory markers are improved.   The GI and I agree that this is allergic colitis; that although it is easier to manage than enteropathy or enterocolitis (in comparison to the two), it is not something we can continue to subject him too- it will only continue to get worse; and any "hit" to his system will flare it so significantly, he will end up needing a blood transfusion.  We need to find a new path, a different path that he can thrive on....but where does that path lie?    

TPN is the answer from the GI.   New food challenges and time is ours.  Which one will be the solution, we are not sure.   

TPN would meet his nutrient needs, but TPN is not free of his allergens (corn and soy).  We could potentially leave the soy out (that is in the lipids-the fats), since he takes a diet orally- we can give him fats orally (which he gets in hemp milk and safflower oil); but we can not leave the glucose/dextrose out- it is the "rider" for delivery of the nutrients.  What does a corn allergic person do?  I'm not sure.  Maybe we will need to explore that, but first- we owe him to try a few other things....

But his allergy is a GI allergy and shouldn't be affected by the TPN ingredients, right?   Well, the whole time he was on TPN, he had villi damage....so his gut was getting "hit".   Also, he regressed, significantly.   I saw it happening while he was on TPN but I noticed it even more dramatically once he came off.  He has underlying sensory issues that come out (significantly) when he is reacting a food.   Well, on TPN they stayed around all day long and his body couldn't cope with it.  He began to be very specific in his needs, we had to keep the house dark, he didn't want anyone touching him, his language had halted and was starting to go backwards....everything was in a heightened state interfering with his quality of life, and ours.  It's not the ideal situation.  However, he did gain weight, his hair grew, he expanded his developments (even though his sensory issues kept him from practicing them, they were there).  I know that if his body can not absorb nutrients any other way, we will have to do it - we just need to know that is the right option.