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.   

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! 

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!

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.

Feeding Tube Awareness Week 2012

This week is Feeding Tube Awareness week (Feb. 5-11th).  There are two classes of feeding tubes- parenteral nutrition and enteral nutrition.  Enteral nutrition is when there is a tube inserted to be fed through the stomach/intestines (such as nasogastric, gastric, jejunal,...); whereas parenteral nutrition is nutrition fed through the vein.   Little man has a PICC line for TPN.  He has a periperally inserted central catheter for total parenteral nutrition.   This week, this PICC line will be replaced with a Port.   Little man has had the PICC line for 6mo.now, which is a long time to have a line that is meant to be temporary.   It was placed to be temporary as we had hoped it would be something to give him gut rest and healing, with catch up growth; to prepare his body for the food trials we were doing to get him a tiny menu (and then off the TPN).   The food trials were not as successful as we had hoped, so we have come to the decision that it would be best for little man to convert his PICC to a port-a-cath placement...which is a line that will give him more permanent access.  The port gives us more flexibility as we attempt to advance his diet.

A few things that became clear over the past trials: 1). he struggles to gain weight even on IV nutrition. 2). he struggles to maintain hemoglobin levels even on IV nutrition 3). his body benefits from the IV hydration following a vomiting reaction, and 4). his oral aversions are strong and once food starts making him sick- he loses interest fast.

The PICC can't stay in, it is coming out and needs to be replaced.   The port will cover him for all the above concerns from what we have learned he needs.  The port will also give us some flexibility when he is ready to be weaned form TPN (once we find enough safe foods), we won't have the make the decision about pulling or losing the PICC line before he is ready.  The port will be there until we are sure he doesn't need it anymore- nutritionally, iron, hydration, calories....

The TPN is saving his life right now, it doesn't come without it's own set of risks but weighted for little man, the benefit still outweighs these risks.   We continue to take it one day at a time.  

Please take a moment to read For Friends and Family on the Feeding Tube Awareness website; it gives some  insightful perspectives into the life of a tube fed child.

For twelve hours every day, Little Man is "fed" through this "lines" (as he calls them).   It has changed some of our routines but it has been worth it to see him thriving so well, while we wait for his gut to heal.

TPN

Little man has been on TPN for 5monthes now.   TPN is total parenteral nutrition and it is nutrition through a PICC line (Peripherally inserted central catheter), which is inserted into a vein.   So, he receives his nutrition through a vein.   The disclaimer here is that although this is part of our Little Man's FPIES (and what this blog is for), this is not typical for FPIES.   Although, it isn't uncommon for some kids with several FPIES allergies to have G-tubes, which is a feeding tube inserted into the stomach to allow for formula to be fed through the stomach; this is typically due to several severe reactions causing the little one to refuse to take enough nutrition through the mouth, or have complications from severe reflux necessitating the nutrition via a tube inserted into the stomach.    We have previously discussed a G-tube for little man but it wouldn’t change that his body does not accept any commercial formula’s; so the benefit vs.risk of a Gtube has not been enough for us to pursue it.   Little man’s FPIES results in severe inflammation, inflammation that doesn’t seem to turn off (is this an auto-immune component or simply his FPIES, we are not sure).   The inflammatory mechanisms have caused persistent small intestine villi damage; again we do not know why.   

Little man received temporary TPN in December last year for a month after soy challenge revealed villous atrophy, weight loss, malabsorption.  We knew his body benefited from the nutrition via IV.  That his body knew how to utilize these calories and bypassing the gut meant no malabsorption.  

This summer when little man had severe Vit.C deficiency resulting in Scurvy, he needed immediate Vit.C replacement to turn the Scurvy around.   Vit.C in this country typically comes from corn starch, added to foods, enriched in products, in over the counter Vit.C supplements, and even in pharmaceutical grade Vit.C supplements- tablet form, liquid form, any form.   There are a few products available that come from tapioca starch; but Little Man had a severe dumping diarrhea and metabolic acidosis reaction from that last year.  We did not have a supplement that was known to be safe.   He also was declining again from the persistent malabsorption following multiple trials.   It was decided that another PICC would be placed and TPN would be initiated.  The PICC was placed and IV Vit.C started in August, TPN was initiated in September.  It’s now January, it’s been 5mo. with a PICC line and overnight TPN feeds, 12hrs to provide ~800 calories; his homemade formula that he continues to drink during the day provides the another ~400-600 calories. 

TPN has given Little Man a break, gut rest while getting a break.  Complete nutrition that doesn’t cause an inflammatory response in his intestines.  No food trials for a few months, while getting nutrients his body has been missing for too long.  The homemade formula is missing or deficient in ~12 vitamins/minerals.   B vitamins are the big ones, being a plant based protein source, Vit.C (as mentioned) is another one. Some other ones we don’t often think about but are important for their own functions in our cycles of nutrition.    I know his nutrition needs, but I cannot provide for them.  This is an extremely frustrating component of this allergy for me, the knowledge of incomplete nutrition but not being able to provide for it, all in the same breath.

TPN has given Little Man significant weight gain, catch up growth.  He has gained ~1/2#/week while on the TPN and is now over 30#!  He went from 2T clothes being big on him to now fitting in some 4T clothes!  It has been dramatic and so great to see.    His hair also has grown in really well.    As mentioned above, he was missing some nutrients but in addition to that, he was also malabsorbing many.   His homemade formula provided the same amount of calories- or more! And yet he could barely maintain his weight much less gain weight.   He had times when he would gain (probiotics is one, taking breaks from trials is another) but then we would do a trial and he malabsorb for a few weeks again before evening out and then have to spend time catching up on the weight loss.  A vicious cycle.  TPN threw a spoke in that cycle and allowed him to gain weight and catch up.  

TPN has given Little Man the IV hydration his body needs after a reaction now that we have started food trials once again.   IV nutrition is the treatment following an FPIES reaction, the hydration he gets overnight via IV is exactly what his body needs to “flush out” the toxins the body turns his food into; we can see that clearly for him…and we are so grateful to not have him suffer for days on end.

So, what is the worry?  He’s thriving on TPN, can’t he just stay on TPN?  A PICC line (the IV access line he needs for the TPN) is high risk for infection that can quickly lead to sepsis.   Little man has had this once, I don’t want to see that ever again.     It was reassuring to see his body fight so hard, and know what to do, under such dire circumstances.   But I never want to see him have to endure that again.   But each day with the PICC line is a risk that it could.  TPN is also very hard on organs, liver and kidney’s that have to filter these substances directly- with no filter from the intestines to assist in this process it goes straight into his blood – directly feeding his cells.  These risks are high.  TPN is not designed to be forever, for now the benefit has outweighed the risk for Little man as it is what keeps him thriving, giving his gut rest while we wait for his immune system to mature – to not attack food as toxins.

So, how much longer will he have TPN?  It was supposed to be a more temporary situation but the gut rest alone hasn’t been enough, the nutrition it provides hasn’t been enough.  It has all helped significantly but it has not erased his body having FPIES.  It does not erase that we still have to trial all foods to find him a menu, it has not erased that he has recently had reactions to strawberry, egg, potato, and he refuses to eat coconut, pork, beef, cauliflower; and now even pineapple is questionable.  TPN gives us the safety he needs to push through food trials….but the clock is ticking….

Facing another hospital stay?

I am going over my logs and trying to find the pattern of where this all could be connected to- a start point? I can't really find one, except that once he started to have issues- it just looks like a ball rolling downhill collecting things along the way. Each step we took with anything compounded on issues/inflammation/enhanced inflammatory and immune responses he was already having.  Is he chronically reacting to something?  Is he just declining? Is his nutrition not keeping up? Is his immune system overreacting?  What is going on? 

I look back to notes from our last hospital stay. He was having issues with sleep at that time but otherwise doing ok. Once the PICC line was removed, he gradually started to sleep better. It took A LOT of work to retrain him for sleep.  But also, the multivitamin (which had corn starch derived ingredients) fail set off his inflammatory reaction and I think we just kept seeing things cascade from that? His body doesn't seem to know how to shut off once it starts the inflammation.  Is this an auto-immune component or an immature system?

Some kids take 5-7days to heal and ready for next food trials; while others- similar to little man- are taking 4-6 weeks before they are properly digesting their safe foods, gaining weight and reflux and such are not bothering them at night. So, for our little man, with the slowly healing inflammation, we just see compounding problems and then if he takes continued hits (accidental ingestion, accidental exposures, trials of banana, blueberry, elk, B vitamin, different probiotic strains....) it just continues to compound....

Will TPN reset us again?  Is it necessary? What assurances would we have that we don't land here again?  What would we do different after this TPN?  

Hematology follow up

Little man has went through oral iron supplements- responded well too and then did not respond at all, and then actually seemed to have a reaction to (a new formulation Rx), hemoglobin levels dropped to 5 in October- blood transfusion necessary.  Hemoglobin rebounded to 10.5 following blood transfusions, wonderful!  Continued oral iron supplements, and a mere 1mo.later, hemoglobin back down to 6 (following a soy-challenge and discovery of villous atrophy).  Hematology consult, with recommendations for IV iron therapy for 10treatments (2x/week for 5 weeks).  That's a lot of IV sticks, PICC line placed instead and given parental nutrition along with iron therapy via the PICC line for 4 weeks, followed by 1 more week of IV iron.  

The last treatment was one week ago, a lab draw a few days later revealed a hemoglobin of 10.8!  His body responded well to the IV iron therapy and rebuilt his iron stores and red blood cells.   Anemia will always be a component of his diagnosis and he will receive IV iron periodically until we can get him past the curve on his tiny menu to some more iron-rich food sources (ie- MEAT!).   

With the news of the restored hemoglobin levels, we were finally able to remove the PICC.    Little man had the same PICC line for 38days, we kept it clean and intact and NO infections!  Whew! And it is now out - he got a treat last night, and then one just for the heck of it this morning- a full-soak-up-to-his-chest- BATH!  A no-soap bath, but still, playing in water, soaking bath is a treat.   We had given him a few baths over the course of the weeks, but with an arm wrapped in plastic, it was more of a chore than a relaxing activity.   Sponge baths were easier.  

We will do lab checks every 2 weeks for the next few months, as well as IV iron therapy once a month for the next 3 months.  We will not let any slippery slope land us back to a PICC line again.....we hope, and pray.  

Now, onto food trials....soon....

Biopsy Results!

This week we found out the biopsy results, and confirmation of true gut healing for Little Man!!  We are so excited at this prospect of a "reset" button on the last many months of trying to play catch up since corn fail (and before).

Inflammation healed, villous atrophy gone.  Christmas wish (and many months of prayers), answered.

We now have a head start, a real chance at passing foods, at expanding his tiny menu -- or just staying still with the formula that has sustained him since stopping the Neocate.   The only catch is, he needs some vitamins to fill in what his hemp milk formula is missing.   He needs a multivitamin/mineral supplement.  Having this will complete his daily needs -- to assure us his nutrition during breaks, during trials, during reactions, for proper growth and development.    Taking away the Neocate and starting him on hemp milk formula stopped the daily assault on his gut, and his daily pain and random vomiting but the damage of corn had been done, other food trials did and left their "damage" and then there is the villous atrophy (from soy?, we still are not sure).   But, taking away the Neocate also took away our complete vitamins/minerals.   This was supposed to be filled in my a tiny menu- but we couldn't get to a tiny menu.    So, next steps....to trial a vitamin.   My searching has continued and thanks to some great dietitians- we have found one that is the "lesser of all evils"...apparently a 100% corn and corn derivative free vitamin does not exist.   We found one that is worth trialing....to give him that complete component he needs in his diet.  

But, trialing a vitamin with corn derivatives does not come without it's concerns.  We are reminded of how quickly, and how severely he reacted to a Vit.C derived from tapioca (a previous fail from bloody dumping diarrhea resulting in acidosis), such a minute amount hit his system so hard and we landed in the hospital being evaluated for a blood transfusion.   Not a lesson easily forgotten.....

But he needs the vitamin....

Our GI has assured us that we will do a 2 week trial of the vitamin (as we know trace amounts will potentially bring on a myriad of symptoms and not a full "reaction" of violent vomiting and diarrhea, lethargy.  The plan is to push through the symptoms, noting them as we go and if they do not subside, build or continue to be worrisome- she will re scope him to be sure we haven't lost his baseline of NO inflammation and NO villous atrophy before we continue on the vitamin or onto food trials.    The vitamin was ordered yesterday, will arrive at the end of the week, we will start it Monday. 

But in the meantime.....we are weaning off TPN and we plan to go home from the hospital (after 25days) tomorrow!!  We are SO ready to have him home again, to enjoy his baseline, to re-establish a "home" routine.  

Little Man has been weaning off his TPN while reintroducing his hemp milk formula - which he has been taking really well.  In fact, he has started to ask for his "bat-ba", he also asks for his "night" (translation blanket) when he wants his bottle, or a nap.   He has learned other words such as chair, door, car, bye, thank you.  He has added knowing where his eyes, ears, mouth, tougne, nose, feet, and belly are.   He adapted to hospital life and we made the best of it, taking any moments as teaching moments and play time.  His brothers visited when possible.  We will all be very glad to have him home....we were able to take him home for 4hrs on Christmas Eve and on Saturday and Sunday evening as well - he LOVED every second of it! 

We are ready to close the door on 2010, and greet 2011 with optimism and health.    May the New Year bring us (all FPIES families) a renewed FPIES path!

My Christmas wish....

We have been in the hospital 2 full weeks now; we will be here for 1 more week (3 weeks total) before we discuss discharge plans and next steps.   Yes, that means we will be here over Christmas.   It doesn't surprise me.  We were on the road, traveling back from PA- having just received his FPIES diagnosis at CHOP on his 1yr. birthday.   We celebrated our 13yr anniversary in the hospital with Little Man after a tapioca reaction, we celebrated my birthday and Halloween with another hospital admission for a blood transfusion.  We avoided a hospital stay for Thanksgiving- in fact, we had a wonderfully quiet and family centered Thanksgiving.   But now, here we are again- facing down another holiday to be celebrated in the hospital.   

We spent the first week adding components to his TPN: dextrose, amino acids, Iron Infusion, then fats and finally vitamins/minerals.   His body showed us weird "off baseline" symptoms at every addition- nothing serious enough for "red flags" so, of course we pressed on....he needs this gut rest with concentrated nutrition.   It is our ultimate hope, pray, wish that this is what he will need to "reset" some of the wrong steps we have taken on this journey....a fresh start for better management of this allergy. 

The second week we spent working him up to 100% of his needs from the TPN.  He has still been able to drink his plain, unflavored, original Hemp milk - as "icing on the cake" and takes in 200-400calories a day, as his "icing".   We have seen good weight gains, but at this point still too early to calculate how much of that is "true" weight gain, or "dry" weight as he is very well hydrated from the TPN solution.   I have good hopes though that some is true weight gain, and that it not only means he is doing some catch up time (from concentrated nutrition bypassing his inflamed gut) but also that his villi have repaired/rebuilt themselves enough that they aren't stealing all the nutrients. 

Little man has received 5 IV Iron infusions, initially his body responded really well to it by bringing up his hemoglobin a whole point (from 6 to 7 now).   His body does seem to over-react to the infusion though, he becomes hyper (crazy hyper) for the infusion day and following day; then he gets a "strung out" look, pallor look to him the day before he is due for the next infusion.   I have yet to figure out if it means anything, or if it is "just" a side effect.   He has 5 treatments to go, so hopefully it isn't something that continues to build.  

His scope is on Thursday and everyone is anxious for that.  Biopsy results won't be analyzed/read until Monday due to the holiday weekend; so we will wait patiently (some more) and begin cycling his TPN so he can be weaned off (and hopefully be home by this time next week!)

My Christmas wish?   Gut healing, no inflammation visual or on biopsy; repaired and restored intestinal villi and true weight gain.  Oh, and a healthier 2011! 

Failure to Thrive...

We've had failure to grow and gain weight but we had avoided the "big" FTT....these words were uttered yesterday by the Pediatric consultant.   Another mom's words echo through me when I hear FTT: "failure to thrive may as well being saying failure to be a mom".   I don't know if it is because I am in dietetics field or if all mom's feel this hit as hard but words like "malnourishment, undernourished, failure to thrive", etc mean more than just diagnosis language to me.   To me, they make me feel like I am being blamed for his nutrition...when in all actuality- I think he's done well for everything he has gone through.   His iron is low, his weights are low but steady.  All his other labs are doing good, he isn't as "sick" as one would think reading his chart.  That isn't to say that he won't be if his current issues aren't treated.  Villous atrophy and gut inflammation will lead to malabsorption of nutrients - there malabsorption is a better term....at least it says it for what it is...his illness is doing this to his body- we are not.   We are in fact, doing the opposite- going to great lengths to keep him from becoming more ill, suffering more ill effects from his allergy. 

His formula kept him in daily pain and disturbances to his system and random vomiting every few days.  I made him a formula that took this daily pain (that had been going on for most of his life) away, but with that I also took away assurances of some micro nutrients.  The formula is adequate in calories, protein, fats and carbohydrates as well as many other nutrients; but it lacks about a dozen or so of the many micro nutrients we need in a complete diet (although I challenge you to find a typical 18mo.old who meets all these micro nutrients needs daily, but I digress- Little Man isn't typical).  Adding fruits and veggies, a meat and a grain- building a tiny menu, would get him these missing micro nutrients....but he has not tolerated food introductions.  Giving him a vitamin may fill in these gaps, but he can not tolerate the additives in most (all?) vitamins- giving him foods and vitamins that his body rejects puts the very real possibility of making him more sick; and thus less able to absorb nutrients from even the formula he gets daily.  The formula that is adequate in calories, and yet he doesn't gain great strides of weight (gut inflammation prevents this).  The formula that is adequate in iron and yet his iron has only continued to fall (villous atrophy contributed to this- recently and likely a year ago as well, initially causing the low iron that set him behind from the beginning stages).  

Today, little man received another dose of IV iron infusion.  This will continue 2x/week for the next few weeks.  He continues on his plain hemp milk, and his TPN is built up with all ingredients to nourish his body and repair his small intestinal villi; so we will continue with this recipe for the next 2weeks and then the plans are to do another endoscopy to check on his villi; and proceed from there depending on the findings.  The hope is that the inflammation will be healed and the villi will be rebuilt so that he can go back to his Hemp milk formula, peaches and millet and re-begin food trials to finding that tiny menu.   

Little man is thriving: he plays wildly (a PICC line doesn't slow him down- it only speeds up his parents following behind him tirelessly so his lines don't get tangled, caught or pulled).   He builds blocks, puts together puzzles, processes language and follows directions, makes friends, gives "high-5's" and kisses, and learns more words everyday.  This week he has added "ice", "car", "love you", "this" to his vocabulary.   For 18mo., I still wonder if he isn't a little behind for language- but he doesn't get as much oral motor development so, again- all things considered- he is doing really well for what he has had to overcome.

PICC and TPN

The PICC line placement went well on Monday morning.  He tolerated the procedure well and has been allowed to have his plain Hemp milk instead of being strictly NPO, so that helped with the hunger pains he was feeling when he woke up.   He isn't drinking a lot of his hemp milk because his IV line gives him enough fluids for him to not be as thirsty.   But at least he gets to still have his bottle for comfort and oral motor skills.

The plan is to build up his TPN (total parental nutrition) each day adding a new ingredient component...thanks to the help of our great Dietitians that helped everyone to see this was a necessary -- although slow -- process to go through for him. It is exactly what I knew he needed, and although it will be slow, I feel it is essential for him.   One ingredient at a time for 24hrs at a time, monitor how his body handles it and assess symptoms as we proceed, and move to next steps the next 24hrs. 

Monday was Dextrose, so carbohydrate source.   I am not sure how his body is truly tolerating the dextrose but it is essential so the symptoms may have to be a "risk vs. benefit" scenario.  If we are once again, sensitizing his body to corn derivatives (which I suspect  we are)- we will just have to consider 18mo. our last corn ingestion's and remember this date as we look at when we will challenge corn....which at this point, I have no interest in doing it before he is 3 anyway.  Once we adapt to a diet of safe foods for him- I have little interest in challenging that for the minimum of 18mo. window that is felt to be the Tcell "memory", or life.  This allergy does not build up antibodies as in a typical allergy.   The mechanism is thought to be T cell.   Tcells "shed" their memory every 12-18mo.(from what I understand); so this along with gut maturity is thought to be the criteria for time period of avoidance for known triggers.   Symptoms that I am worried about?  Hyperactivity, flushing, mottling, disturbed sleep, decreased appetite, and yesterday- vomiting and loose stools (more on that later).  

Monday also brought the news that his hemoglobin is back down to 6 again (blood transfusion had brought it up to 10 from 5 just a little over one month ago).   Getting him nutrition, repairing his gut villi, and re-establishing a good supply of iron in his little body are the main goals in his health right now; and this just bumped everything up a notch on the urgency scale.   We are right where we need to be....in the hospital, getting IV nutrition, getting monitored for signs and symptoms along the way.  He will also have a 4th scope at some point to assess how this is helping, and hopefully get a better grasp on how he is doing and where we are going after so long being "on the edge". 

Tuesday was the start of Amino acids (protein) and with the news of his hemoglobin decline; iron was infused in at the same time as well.   He will received IV iron infusion two times a week now for the next few weeks; this will help rebuild his own stores, that have been so low for so long...finally.   The IV iron has a risk of anaphalxis, so he was monitored closely for the first 20min but presented no anaphalyxis reactions.   Although, an hour went by and he began to display some concerning symptoms (face flushing, red eyes, and hyperactivity).  This all subsided within an hour though and he went to sleep well.  Unfortunately that sleep did not last, a few hours later he was awake and as I was preparing his bottle - he coughed and then came the vomit.   It was not just spit up, it was not projectile, it was forceful but not violent and not "garden hose" amounts.  However, there was flecks of brown tinged blood in it.   This was concerning.  It did not continue and he finally ate some hemp milk and calmed down but did not go back to sleep for another 4hrs.  It was a long night.  He was uncomfortable, tylenol did seem to help some with that.   He finally slept a bit from 5-7am and woke up happy and rested-appearing.  He actively played all morning and took a nice long morning nap and even squeezed in a late afternoon slumber.  He is catching up on sleep and looking better. 

Wednesday (today) brings the addition of Lipids (fat).  So, now his TPN has: Dextrose, Amino Acids, and Lipids, plus an acid reducer (because of eating less).   Tomorrow will be a multivitamin.  A multivitamin is an important step but it also does not come without it's own risks as it has ingredients that he would possibly react to orally.  But, this is through the IV....

This mechanism I still do not fully understand, the T cell response and the degree of the allergy.   It is a gut allergy but T cells are all over the body.  Do the Tcells of the gut only recognize the allergenic food?  Then explain atopy patch testing....where a food substance is placed on the back under a metal disk where it sits for 48-72hrs to see if the skin responds (being a delayed hypersensitivity reaction).  It is not 100% accurate testing but it gives a guide.  We have not yet done ATP, and not sure if we will since the places we have been do not offer it.  So, the question remains....will his body respond to his known triggers in the IV?  The dextrose is from corn, but it is hydrolyzed down....and yet corn allergic patients have had reactions through IV's before, and yet some do not....it is like everything else -- the only way to know is to know.  It's all about the trials....

Reset button?

We all, in FPIES world, wish for the reset button.  A "fail" is introduced, sickness prevails, weight loss, oral aversions, reflux pains, eczema flares, etc.   We have been in a vicious cycle with Little Man for many months now.  We find enough pieces to hold up a few sides but then it makes another side fall down.   We found FPIES, we learned how severe and sensitive triggers are, we removed all forms of all of his known triggers and we got him out of daily pain and random vomiting.   Removing daily pain was a BIG step for us, but that meant losing the reliability of an elemental formula, and safe vitamins.  We built him a formula that he could tolerate and gain weight on but he continued to struggle with blood losses and poor absorption of iron on a plant based formula diet, with no Vitamin C. 

Pain and vomiting controlled.  Check.   Adequate calories for growth.  Check.  Introductions (slowly) of a few foods (millet and peaches).  Check.   Blood transfusion to rebuild stores.  Check.   Iron supplement daily. Check.    Soy challenge to begin to add more varied protein sources to his diet for iron.  Check. 

Spiraling begins: Bottom falling out on 4th day of Soy challenge.....villous atrophy and inflammation on scope but happy boy once soy is removed.   Omeprezole is started to help heal inflammation, and help with his empty stomach pain.  Omeprezole brings on it's own set of side effects.  Hemoglobin begins falling again.   We were moving right along....we've hit a vicious cycle that we can't seem to break. 

Hematologist consult yesterday morning.  Long discussions about his need for iron (yes, I know he needs it and we are giving him all the doses his body can tolerate and he doesn't spit out).  He is gaining weight, primarily doing well but his iron is falling again.   It is discussed that this is the villous atrophy and that it is evident it is not healing as fast as we would like it to- to restore the villi to be able to absorb the iron we give him, and supplement him with.   IV iron transfusion therapy is discussed.  He will need 10treatments, 2x/week; starting as soon as possible.  We decide we will start tomorrow.   We are worried about his reaction to it, but it is pointed out..."we have no choices".   Agreed, we are already at the point of TPN discussions; so we are at the "end of the line" for choices/options to get him back on track.   Appointment is set up for IV Iron transfusion therapy for Saturday morning.   We then proceed to the GI doctor's office for a weight check and further discussions on next steps....

IV iron transfusions 2x/week means he will have IV inserted 2x/week for the next month and a half.  GI doctor prefers to have a PICC line placed....if we are going to place a PICC line, then we should also do TPN with that PICC line and see if gut rest with alternative nutrition can get him the "Reset" he needs to get more control of this diagnosis.   Admission for Monday morning is planned for PICC placement and begin TPN.  He will continue to get his IV iron transfusions during this.  We don't know yet how all this will go, or all the details surrounding it.  Honestly, we are still processing it all.   We know he could benefit from the gut rest, and the nutrition.....