Tailored Nutrition for FPIES?

My brain isn't going to shut off until after I've visited with Dr.J....then I'm taking an FPIES vacation!! Well, not really as we know that isn't possible but....

After reading through some of Dr.J's research, and then the Nutrigenomic course.   My thoughts go back to where I was before these readings, before hearing of the promising links with Dr.J's research....that FPIES needs guidelines for food introductions/trials, with a solid understanding of why but then each child needs their own individualized introductions.  From the order of foods, to the days of trials, to the amount of the trial and how many foods you do in a set time period.   Is this the missing link?  A tailored nutrition program for food introductions and FPIES diet?  

Even from the beginning- doctors were trying to put Little Man in a box he didn't fit in....am I trying to do the same?   FPIES protocols have been developed but I also hear of mom's going "off the beaten path" and trying something new- and it works!  Or just adding to current protocols, and finding success.  The common thread is that everyone uses FPIES protocols as the base and adapts them to their child's needs, their lifestyle, their contributing complexities (genetic or environmental).   What will work for our Little Man? 

A few months ago, with thoughts of food trials whirling in my head, shortly after soy trial in which things seemed to go "ok" (some build symptoms but nothing major) for 3 days and then by day 4 everything fell apart and came crashing down around us.  A thought came to me that maybe we are looking at it from the wrong angle for Little Man.  Maybe he needs 3day trials, or 3 different foods at the same time? 

His soy fail symptoms were no doubt because of the large volumes we were giving him had something to do with how hard he crashed but his body wasn't tolerating it- would a long trial have made any difference?   But a pattern was noted, Little Man seems to do ok on a food for 3days (with other trials and before FPIES diagnosis), and then by the 4th day is when things start to cascade- is it build symptoms or yeast die off from gut microflora changes, or is it the body fighting to win the imbalance with the immune response?   What makes his body want to accept a food, seemingly have developments of oral tolerance, and then hit with the attack mechanisms?  Why the delay?  Why the build?   This is where our FPIES protocol needs to be adapted for our little man specific needs.....where nutrition meets immune response?....where nutrition meets genetics?.....click, click, click- I can't seem to make it all fit together....

Back to my thought a few months ago...I just kept thinking- what if we trialed something for 3 days and then switched it up?  Not giving his body the chance to build the intolerance mechanisms?   Or, what if we trialed 3 foods at the same time, 3 foods that would have different roles on gut response?  We didn't trial hemp, arrowroot or safflower oil...why did those work out?   Then again, tapioca was before arrowroot and that fail landed us in the hospital with a very sick little man with acidosis.

So, what do we risk?  We risk a reaction.   Well, we risk a reaction with every food trial.    What we really risk is a reaction and not knowing what from; but with a build reactor- we risk that anyway already.   We risk introducing foods and then having to take them away; but with Little man- he barely any foods anyway- so what do we have to lose?  He isn't gaining weight like he should be, he is missing micro nutrients, he begs for food....is this just my desperation talking?  

Right now, we are still trialing coconut.   We had a chicken ingestion...not intended but I didn't stop him either...bad, bad mommy but I wanted to see if he would actually put it in his mouth or chew it, he did - we regretted it.   The chicken had seasoning on it that was corn derived.  He didn't directly eat the seasoning and really barely directly ate the chicken but he suffered for it.   Not a full blown reaction, but enough for him to associate what he had eaten the day before with the pain and symptoms that followed.  He stopped accepting the newly trialing coconut.   Even stopped eating for a day.   Restless sleep, wide awake sleep disturbance, acidic poop, diaper rash, rosy cheeks, ongoing fussiness, pallor....and he stopped eating.  Stopped trusting food, even his formula (which most often he will consume more of when his tummy is hurting).  So, was it the seasoned chicken (crock pot chicken sitting in chicken broth with seasoning salt on it- he got an inside piece, reached for it and grabbed it while I made dinner for his brothers) or was it a build from the coconut?  We had done 3 days of coconut and then stopped for a day, this was the day of reintroduction, had planned to wait until the next morning but had to distract him from taking away the chicken (he wanted to eat more, but even knew he couldn't- put his hand over the plate of cut up chicken for his brothers and said "no-no" waving his hand over it....so sad).  I gave him a spoon of coconut butter (a spread made out of coconut) to distract him- so the re-trial of coconut began that night instead of the next morning as planned.  But, then he refused the coconut milk I had made for the trial for the next 3days; although he did eat his safe peaches. 

We have also re-introduced the millet puffs.   At this point, it came down to a risk vs. benefit decision.   We do not know for sure if the potential cross contamination of wheat with these puffs is a real issue for him or not; we don't even know if he has an intolerance to wheat, except through suspicions from reactions through my breastmilk when he was still nursing (way before FPIES knowledge or diagnosis).   He LOVES his millet puffs, including them in his diet gives him a consistent snack, a finger food, a texture practice...and he tries new foods much more readily when he consumes them daily.   We don't see any consistent symptoms that we could relate to the puffs- we had pulled and re-introduced them many times before in the past as well to be sure; so for now- we will keep them in his diet....until something arises that will outweigh his benefit vs. risk.  For now the benefit outweighs the risk.  

So, right now he consumes millet puffs consistently.   I still am making merry muffins with millet flour and peaches, oil, baking soda and arrowroot but he doesn't love them so doesn't eat them everyday.   He doesn't even eat his peaches everyday.  It's as if he knows, he can handle them every 2-3days but not everyday. 

Millet puffs, millet flour, peaches, trialing coconut and without knowing if coconut is safe, we have started an apricot trial.   In the middle of an apricot trial, we have given him raw organic carrot sticks twice.   He has 3 foods, in TEENY TINY amounts that he is consuming, that I have no idea if they are safe....but I don't know they aren't safe...

What will I do if he reacts?  I don't know.  Fall apart and pick myself up again as I have done dozens of times throughout the last 20mo.   But maybe too, we'll connect another piece to the puzzle.  And maybe, just maybe he won't react and we'll build his tiny menu.  

He has been sleeping better, playing well during the day but he had mucous in his diaper this morning and a pallor look to his face.   But, he may have (likely did) ingest bath soap 2 nights ago!  We have a "safe" soap for him of coconut oil but that night, his 3yr old brother dumped bath soap, regular Johnson's bath soap, in the tub before I could notice.  No vomiting from it, so assumed he just got some drips of water washing over his face and not actually drank it.  He had wet burps and hiccups almost immediately following the bath, disturbed sleep that night with stomach pains.  

Are we tired yet?  This is all just this week.  How do we move forward when every food causes some symptoms?  How do we introduce foods he won't eat?   How do we get him to take his formula when he has symptoms from a food and associates eating with pain?  How do we get him to sleep better at night when he needs more calories in his diet during the day?  We need a break in this viscous cycle....will the missing puzzle pieces be that break?  Will a tailored nutrition protocol based on Little Man's intolerances, his delayed reactions, nutrition from his formula, his personal gut microflora?  Nutrition from functional foods, pre and probiotics, missing micrnutrients...all tailored for his specific needs within his FPIES.....what if this could work?

In hospital food trial.....postponed

I didn't even get a chance to blog about it and we've already had to postpone it!

GI appt was on Wednesday. GI doctor agreed with us that we were ready for a food trial, we've already discussed first foods to be in-hosptial trials. Little mans' reactions have been long-drawn out and make him very,very chronically ill for weeks. The doctors want to do what they can to learn about what a food pass or food fail looks like and learn what they can do to help his recovery. They will monitor labs, symptoms, diapers, intakes, and weights, and anything else that comes up.

Wednesday was a busy long day. 2nd day of school for 2 older boys and Little Man's appt in the middle of the day. We finally got his compounded Iron supplement, that we had compounded with Vit.C as well. Vit.C will help his body absorb the iron (in the supplement and in the hemp milk). I was so excited to give it to him, I got home and immediately mixed it up for him- a small syringe full of rust went into this mouth....and then I realized I didn't get clarification on the Vit.C origins!! I called the pharmacy and they assured me it was corn free. I breathed relief. My baby boy was going to get the iron his body so needed. He spent a lot of time napping that afternoon and evening but thought it was from the long and busy day. I worked the Thursday (the next day) but gave him his iron supplement before I went to work. A call from hubby later that day revealed Little Man had already taken a few short naps. One could hope this means his body is just getting the rest it needs, but my radar went up- what is going on with that? I get home from work and he is whiny but he's been whiny- he's been cutting his bottom 1yr molars so have had to write off his whining to this. But could it be from the Iron/Vit.C or is it from the protein powder that has sunflower seed derived Vit.E? Adding anything....Any.Little.Thing. to his diet always has to be a "trial". He's had the protein powder in large enough quantities- we would think we'd have seen more build symptoms by now but I will worry about this for another few weeks probably. Maybe I should just trial sunflowers to be sure?

Last night, Little man went to bed but was awake screaming twice before I even fully went to sleep. Thankfully, little man's daddy wasn't working today so he was up with him rocking and comforting him. After those two times, he wasn't awake again until morning so again- tried to think it was "just" teething or random awakenings. That is until I opened his bedroom door that morning to his cries in his room....and that smell is un-mistakable, the rotten smell of what we now coin as "reaction poop". Mucous, slimy, liquid full diaper reveals he is reacting to something. Is it the Vit.C? Did the pharmacy check close enough to be sure,sure,sure it is not from corn? Is it a build from the sunflower?

I called the pharmacy, they did some checking and the Vit.C (ascorbic acid) they used indeed does not come from corn but we were surprised to find out it does come from tapioca! Tapioca? I had read that as a possible source but I thought, what are the odds? Well, had he not had such a violent dumping diarrhea reaction from tapioca (what led up to landing him in the hospital last month). We still aren't sure tapioca was a FPIES "trigger" (no violent vomiting) but either way, his body did not tolerate it- and caused him to be very,very,very sick. So, tapioca in his Vit.C/Iron supplement would not be ideal for him. I am not sure where he will get Vit.C from, will need to find a fruit he can tolerate shortly after lamb. Ugh- sure wish I could just feed my son food....

So, we have postponed his hospital lamb trial- pushed it back a few days and if we don't see resolution of diaper symptoms (or if he has weight loss or blood in stools)- we'll push it back further. It is a BIG disappointment of a day....the emotions become difficult to contain when a food is failing my son; when a supplement made specifically for him that his little body needs fails as well, the load gets heavy to carry. How much can one little boy take? We were so ready for some things to start/continue going well. There are other plans...everything happens for a reason.

Stay tuned for food trial news...

FPIES = Feeling Powerless In Every Sense.....

"FPIES really stands for Feeling Powerless In Every Sense".  The credit given to this quote is to another FPIES mom, who allowed me to "borrow" it for this post.

How can you feel empowered in any sense when everything normal you know is ripped out from underneath you from something as simple as feeding your baby the simplest things: rice, oats, formula, soy (in everything!), corn (again, in everything!), the list grows and grows and all triggers are unknown -- until you feed them to your child.

FPIES reactions vary in severity, just as a typical food allergy can vary in severity. In a typical food allergy (that most are more familiar with) - one child allergic to peanuts has to avoid foods that contain peanuts because it causes hives, or some mouth itching; another child goes into anaphylatic shock from any exposure of peanut residue. FPIES allergy is the same. One child can go into vomiting/diarrhea/hypotensive induced shock hours after minimal ingestion, and another will cascade down a myriad of symptoms for days before the body gives a full rejection (violent vomiting and shock symptoms) of the offending protein. With FPIES, there is yet to be a way of knowing what foods will cause this reaction. You have to feed your child food that may end up being poison in their bodies. You have to make your child sick to find food for them to eat and sustain on. How does such an awful thing even exist? The underlying stress this puts on a parents shoulders should never be underestimated. The roller coaster ride of emotions can be quite overwhelming. And yet, most of us are walking around without adequate support when we need it most....when our little one's are sick.

FPIES triggers are everywhere. Kids put everything in their mouths, so not even bath soap is safe. Paper has soy and corn. Crayons, paints and crafts have wheat, soy, corn. Baby food is contaminated with dairy, soy, rice. Medications have soy, dairy, corn, additives, colors, in them. Your child is in pain and you can't even give him a medication to take away that pain, you can't do anything to help with the pain but wait for it to pass. Your only consolation? They are too little to even understand, they are also too little to know the difference. What kind of a consolation is that? Think of when you had a stomach flu, or a hangover, or food poisoning, or if you know anyone who has Crohn's Disease or Ulcerative Colitis- ask them how much pain they go through. I imagine these things are close to how it must feel for an FPIES child. But, what can a parent do about it?

What do you do when your child is sick and their symptoms puzzle you or you don't know how to make them better? You take them to the doctor. What do you do when your FPIES child is sick and the doctors don't understand it? You are forced to deal with it on your own. Looking for support from the medical community that knows very little about this rare illness and not finding it, only makes the load heavier. You carry this load every day; some days it is heavier than others (days of reacting, days recovering from reactions, ER visits, doctors offices where you are not heard); but you keep on carrying the heavy-heavy load. I accept my load, he is my child. I am not asking for anyone to take away his FPIES.....just asking for a little bit of support.

We, the FPIES moms in the trenches can continue to make a difference. Continue to work on being heard and raising awareness. if not for our children- for the children following us.

More research is needed, better protocols for how to even begin to help these family's. Help doesn't come in the way of a "cure", many FPIES kids outgrow this by the time they are 4-5yrs old, we are fortunate enough that our children have a diagnosis that has (in the words of another FPIES mommy)"a light at the end of the tunnel, it's just a really long tunnel!". We know (we hold on the hope) our children will not have this forever and we know one day we can look back on it under a different light but that doesn't take away from how tough it is RIGHT now. Help comes in the form of symptom relief and support for the family behind the FPIES child.

Support is one of the biggest "treatements" of this beast diagnosis. And yet, so many of us struggle to find it. This is a chronic illness of a baby/a young child. Their needs are 100% on the parents, a simple "how are you doing" in the beginning of a appointment would go a million miles for me. A reassurance that even though my child doesn't have a test that can 'read' his symptoms- that someone believes and trusts me because they are listening and care about my child, that even though there is little know about this diagnosis- they are willing to learn; to learn so they can help the next time he is sick.

Support is needed, for the family of a child with a chronic illness, and to make sure the family is being HEARD. Coordinated care is essential. Coordinated care -between GI, Allergy, Nutrition, and Pediatrician. Also coordinated care between in-patient and out-patient doctors because we all know hospitalization happens for these kiddos.

Bottom line to how to empower a parent with a child with FPIES? A willingness to learn and to listen to the parents.