Nutrition Care for FPIES

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

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

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

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

Be sure to check it out! 

"Hi!"

Little man can't stop saying it! To us, to his brothers, to friends, to strangers, to doctors, to nurses. The mask has been lifted, even if just briefly, again. Little man has lived so many of his days in pain, that he doesn't waste any time getting down to playing and learning new milestones, and words when he is pain free. He can say "hi","hi-5", "daddy", "momma", "woof", "quack", "neigh", "off", "on", "all done". He can give hi-5, wave bye-bye, clap, ask for his bottle, and he's learning puzzles. He also can walk and run of course! :) It is simply amazing to us that he catches up so fast to these milestones when he has less time to practice (because he has spent so much time in our arms, in pain).

We are very grateful we have pulled him out of his failure to thrive state he was heading down. Many FPIES kiddo's have this somewhere in their days, sometimes before diagnosis when little is understood about what is going on, and sometimes after when the right diet is being identified with food trials and eliminations. We have been running close to the wire for so many months, and we do our best to stay on top of his illness so we can learn more about how it is affecting him.

Little man had a follow up with his pediatrician yesterday (he now weighs in at 20#12oz!!!). The major Children's Hospitals (Mt.Sinai, CHOP, Jewish National) utilize a team approach for following these kiddo's and I am trying to duplicate that here- it makes perfect sense. Pediatrician's are at the center of their care, as they help manage the care of the "team" when so many things come into play- Allergist recommendations, GI work ups, Dietitian follow-ups. It all has to be monitored closely to be sure he stays thriving. I know this is where it would help to be at a place like CHOP (where our Allergist is) but we don't live in or near PA, so we are trying to make the best of what we have here. And what we have here, practically in our backyard, is one of the top leading medical facilities in the country- in the world! The doctors that want to learn about FPIES have been great, and they are really trying to help. Our pediatrician is great, and has been through all of this....but I still feel a disconnect between understanding FPIES and helping Little Man. I wish I could figure out how to get this better connected. The many days, months, and now going on a year of Little man being ill and monitoring and connecting his symptoms, and finding a diagnosis to explain it all, and managing his care, on top of him continuing to be sick, and on top of the other everyday things in life- our other children and their needs, our jobs, our home, etc....is all starting to get overwhelming when I also still feel I need to teach everyone about FPIES while trying to connect how it affects Little Man...most especially when he is as ill as he was before being hospitalized. We are trying so hard to find his baseline so we can build his tiny menu. It will be more difficult to do food trials when he is still having blood in stools and waking up screaming at night.

Dietitians

I believe I've said this before....but it always warrents repeating! Thank goodness for the Dietitian's in Sam's care!!! It was an RD who helped us get to the diagnosis, and today big thanks to our RD at CHOP and our inpatient hospital RD at Mayo.

We struggled finding a baseline for Little Man, we visited with our Allergist at CHOP who suggested his intolerances could suggest a corn intolerance and trace corn proteins in the Neocate formula could be preventing the inflammatory process in his body from calming down enough to find him a baseline to build from. We trialed corn and sure enough, after just 1tsp, failed it, we pushed it another 1/2tsp to be absolutly sure what we were seeing was a true FPIES response and we got our answer. The true beast of this syndrome is that you have to feed the child the food that he could react so violently to to know if he is intolerant or not....it is a terrible thing to watch, I can only imagine what a terrible thing to experience. Little man let us know what a terrible thing by restricting his intakes of the formula, to less than half his needs for over a week...he got so weak, so fragile. We then started him on Hemp milk, putting it half/half in his Neocate bottles and he began to rapidly improve. We started to move further away from Neocate and it's trace corn proteins to more and more hemp milk - he was doing beautifully. We were planning on building up the hemp milk to equal the nutrition in his forumla; while we moved away from the Neocate- adding the nutrients we felt he needed in addition to the Neocate, starting with the starch. The addition of the starch coincided with the first blood in stools we have seen in 13mo. We stopped starch and gave his body a 3day rest, and then restarted; only to have everything come sweeping back- with full force of the worst watery explosive stools I have ever seen! This drained little man so much, so we tried other starches- with no better effects. Now little man isn't trusting his milk again and limits his Hemp milk to less than 1/2 of what he has been taking- going down to the same mere 400 calories he did with the Neocate after corn fail, only with the hemp milk (that is low on carbohydrate) - not getting adequate calories meant he wouldn't get enough glucose for his body to feed his brain....which is the state he entered in to on the weekend before his hospitalization. We knew he was sick, we just didn't know how to get the right help for him. We also knew we had an appt with his pediatrician right away that Monday morning; and knew she could help.

That was one week ago. Where did the week go. I find myself wondering if the doctors here knew about FPIES and what they were really seeing in Little Man upon admission was not malnutrition but failure to thrive from the foods we give him.....would we be ahead of where we are at today?

The focus is on his nutrition. A growing baby needs nutrition first and foremost for brain growth. Little Man's body knew this, and knew what to do to give it to him....burn his own stores to make glucose for his brain- it is a state called acidosis. Little man's body was starting to go into acidosis because his stores were so low....from being so sick since corn fail; and not from a diet of hemp milk.

Which brings us to today, where everyone can hopefully start to catch up. Dr.P at CHOP has given us some great advice...."the parents know the child". If the parents are worried about the child, then there is something to be worried about...."listen to the parents". Dr.P has been calling us daily to check in because we are worried about our little man, so he knows to be worried too.

Today brings us new doctors, new perspective, new approach....the Mayo way- a team of doctors to look at things from every angle; not only to give best care but to make sure nothing is being missed or overlooked.

Our good news today? Our dietitian from CHOP was able to give our dietitian here the resources to show that Hemp milk is a nutritious milk alternative (not to be confused with a formula alternative); but a good base on which to build a good diet for an FPIES child with intolerances to dairy, soy, rice, and corn. Confirmation that I was in fact not malnourishing my child, his FPIES was.....

Our "Sam Syndrome": from birth to diagnosis

Our "Sam Syndrome": from birth to diagnosis

I am a mom of 4 boys. I’m not new to this mommy gig.
Maybe the early signs should’ve been red flags: bringing him home from the hospital and having blistering diaper rash, eczema that started in the first week of life, gassiness, and explosive diapers. But I’d been through all of that before, our first born had milk protein intolerance with allergic colitis at 8weeks old, colic from 3-16weeks old and reflux with throwing up until he was 19 monthes. We had had our share of crying, gassy days filled with projectile vomiting. So I wasn’t alarmed when I began to see all this again. I did see all of this in our 3rd son, but he was only milk protein sensitive. So, I thought I was going down sensitivity road again.

I was exclusively nursing, as I had with all my other boys. I knew what I had to do so I started changing my diet to find the right amount of dairy my little guy could tolerate, this seemed to help some.

He was only a few weeks old and the middle of the night wide awake times began…this one was new but again I wasn’t too alarmed- just considered myself lucky that I had had 3 good sleepers before him. Also started to notice, although we enjoyed the cuddle time, that the little guy liked to be held upright for naps- he would wake up out of a seemingly deep sleep if we laid him flat. So, we created a “nest” for him in his bassinet and crib – with a wedge and a broken down bouncy seat for soothing vibrations (that he seemed to respond well to) and this helped us get some sleep…some nights.

It was approaching time for me to return to work and so trialed him on some formula, for supplements as needed (unsure how my production would hold up). This brought on projectile vomiting from the first ounce. We chalked it up to weird coincidence and tried another ounce in a week or so, only to have more vomiting. Based on our past experiences, we recognized that he wasn’t going to do well with regular cow’s milk formula at this young age. My supply was holding up so we decided to just hold off on supplementing with formula at this time.

But now, at 3mo. old we started to see a colic behavior creeping in- each evening seemed to get worse. We were very busy so we thought he was just picking up on the stress in the house of me returning to work, school starting, etc. My husband works 24hr. shifts, so our 9yr.old steps up to be the "man" of the house and help mommy out when he is on shift. He would tried so hard to help out, it broke my heart and made me so proud all in one breath. It took his words a month or two later, saying “Mommy, what happened to him?” for me to start to really realize I wasn’t the only one noticing that his fussiness was getting worse.

I had started to change my diet around more and noticed immediately if I had more than ½ cup of dairy in a day, I would have a wide-awake, gas filled little baby at 2am. So, I limited my dairy- not having any straight dairy but reluctant to pull all sources out at this point- still not knowing if it was sensitivity or full intolerance and since we hadn't seen any bloody stools, I was convinced he had a sensitivity like son #3. I did notice keeping control of the dairy was helping some but some days it was back to the same, wondered if he was affected by other things (?wheat) in my diet- speculating that with my IBS, he was getting incompletely digested proteins through my breast milk.

We were approaching 4mo,so we decided to trial some rice cereal to see if the thickener of it would help with what we speculated may be some refluxing issues. This seemed to work for awhile, but that would be the course of things to come for the next few months...we were slowly losing the grasp on what was really affecting him and what was really working. We turned back to the suspicion that my production was low, so we decided to trial another formula- this time trying soy. Soy brought on gassiness, stomach cramps, reflux, burping, and a chest congestion that sounded so badly after 5weeks, I feared he had croup or pneumonia. After almost 2mo of sporadic 2oz.supplemental soy bottles, we decided he must be building up sensitivity to soy. We stopped soy. He also was not accepting new foods well, and beginning to refuse many meals.

Our little guy was going downhill fast, we needed to find something that would help take away all his pain as well as nourish his body. We moved on to trial Nutramagin, followed a 100% no soy/no dairy diet (for me and him) while I continued to nurse him, then Nutramagin AA, then a reflux medication. A week on the new medication and his stomach aches doubled and his appetite decreased. His body was not responding to any of our many efforts and he was getting so sick and his pain cries were so intense.

That instinct? Now burning flame in the pit of my stomach. Our little guy was experiencing pain day and night. It was getting more heart wrenching to see....stand by and not be able to do anything, or enough of anything to help him escape this now growing constant pain.

We received a GI consult with recommendations for a new reflux medication and an elemental formula (and to stop nursing). We tried the reflux medication right away but it made him so sick within the first doses and he started to refuse to eat, and we then ended up in the hospital where we got him eating the new elemental formula- Elecare, but this only brought on daily throwing up. We waited for his stomach to adjust to the new formula. We proceeded to an upper GI and then to a Endoscopy and sigmoidoscopy work up hoping to find out what was going on inside our little guy that was keeping him from tolerating the foods designed to nourish his body. The tests confirmed that he did not have Celiac Disease or Eosinophilic Esophagitis but something was still not right with our little boy. We switched formula’s from Elecare to Neocate (another elemental formula) and the daily throwing up slowed down. We tried Neocate Nutra and the violent vomiting began. We would watch as he emptied the contents of his stomach, he was so sick. Then we connected it to the Nutra, we stopped this and the violent vomiting stopped…unless he got a crumb from the floor dropped by his brothers having a snack. He remains so super sensitive to any ingestions of foods.

We knew something was still not right…months on an elemental diet we thought he was ready for re-introduction of foods. And where do you start reintroduction of food? Rice? This brought on days of vomiting and agitation. With this, we begin to make some connections in the literature: could it be FPIES? We went to the next food, something he enjoyed before we stopped food- sweet potatoes. This brought on many days of colic and runny stools and everything the same as rice, except the vomiting- all from just a few teaspoons of pureed sweet potatoes on one day. This was getting to be too much again. We had consulted with a RD (Registered Dietitian) and she brings up a possible connection with FPIES. Here I am coming across this FPIES again. We continued reading the literature and connecting the commonalities. Have we finally found something that could finally explain what has been ravaging our son's digestive tract?

Where would we get an expert opinion? I dove into the world of online support groups and found and connected with other mom’s who echo my son’s experiences, echo the food sensitivities and reactions to foods, echo the anxiety of having an ill child with a syndrome of unknowns….many have gone to this place called CHOP- what is CHOP? I soon find out….Children’s Hospital of Philadelphia, and they have a program for Eosinophilic Esophagitis and in this program they have become one of the leading experts on FPIES. FPIES is essentially Eosinophilic Esophagitis ruled out. And that is what Samuel had- something that, to his doctors here, looked and acted like Eosinophilic Esophagitis but scope had ruled this out.

We call and get their earliest appointment, and go to PA with much hope and anticipation for some direction on how to proceed. The experts at CHOP recognize the signs and symptoms almost immediately. And our son is diagnosed with FPIES, a mere 4days before his 1st birthday. Happy Birthday Little Man!! Now, we have an action plan, we have an Allergist, and we are pulling together our resources to help us care for our son as we journey down this new path.