Mothers Intuition

Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...

Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.

And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

Monday, February 28, 2011

My Name is Mommy....

There are many things that FPIES has taken from me, from my family.   But some things will always remain the same.   My name is mommy.  

This print is hanging in the nursery, which is currently Little Man's bedroom - but it has hung in each of my boys' room. 

My Name Is Mommy....

I can talk on the phone, jiggle a baby on my hip and make a meal all at the same time.

I have been puked on, spit on, peed on, pooped on, chewed on, and pinched by little fingers.

I know the words to John Jacob Jiggleheimer Schmidt.

What is a hot meal?

My designer purse is now a 20# diaper bag.

My favorite scent is a freshly bathed child.

I know the cartoon schedule on PBS.

Favorite word -- NAP.

I can sleep all night in a rocking chair.

I get completely mushy over a drooly simple grin.

I no longer have complete control over my thoughts or my body....I try not to sneeze.

Toys grow and multiply.

I know the warmth, the joy, and the love of being a Mommy.

(author unknown)

The ironic thing about this print, is it is something you think you are reading for a tiny baby....that by 20mo. old you wouldn't think you'd still be talking about sleeping all night in rocking chairs, and carrying 20# diaper bags, or jiggling a baby on my hip, or even getting puked on!   But I often feel like we still have a newborn.   With feedings every 2hrs., not going far from the house because of the high needs, middle of the night wakings, it sure feels like we still have an infant in the house a lot of the time!

But there will always be comfort in the fact that some things never change- I will always be mommy.

Sunday, February 27, 2011

The FPIES puzzle...more on probiotics....

We have been through 5 days of a small dosing of a probiotic.   We are starting small doses and simple strains, we will build from there.  

Little man is among the many FPIES children with a gut dysbiosis that is making their FPIES more complex: more intolerance's than tolerances, more symptoms than not, symptoms build on symptoms and the dysbiosis complicates itself. 

Before FPIES diagnosis, we were lost in a sea of murky waters of chronic symptoms - piling on top of each other and drowning us.    We could barely see straight, much less breath above water.    Once we finally found FPIES, we were able to slowly get ahold of not only his symptoms but his triggers.  Once we got ahold of his triggers, we were left with the dysbiosis in his gut....but not before the damage had been done to his gut.   Now, we have repaired that damage (with gut rest and IV nutrition), we are ready to begin healing his dysbiosis.   

We began the probiotic this week.  Simple strain.  We have noted varying degrees of symptoms on every day.  I have read information from other moms about the "die off" effect with treatments such as yeast protocols, even antibiotics, and probiotics.   The dysbiosis is disturbed and the body is reacting to that.  I recently got a book to review for further information, hoping for more light on our path....The Gut and Psychology Syndrome, referred to as GAPS.  The information presented in this book addresses the neurological effects of gut health and nutrition and has information applicable to the gut health of FPIES kids as well (much like Dr.J is researching the similarity's of the immune dysfunction of ASD kids and PI kids).  In this book, there is a chapter on probiotics.  It is a good chapter, and I jumped ahead to it today as my concern for Little Man's symptoms grow.   This is what she says about probiotic treatments: "...a good therapeutic strength will always produce a so-called "die off reaction".  What is it? As you introduce probiotic bacteria into a digestive system, they start destroying pathogenic bacteria, viruses, and fungi.  When these pathogens die they release toxins.....symptoms may temporarily get worse....may feel more tired than usual, generally "off color", or develop a skin rash. It is a temporary reaction and usually lasts from a few days to a few weeks in different individuals.  To make this reaction as mild as possible, build the dose of your probiotic slowly.  Start with a very small amount.  Observe for any "die off" symptoms.  If there are none, then increase the dose.  When you see a reaction, settle on this dose until the "die off" symptoms disappear.  Then increase the dose again....keep on increasing the dose until a therapeutic level is reached.   This period of building the dose can take from a few weeks to a few months in different patients.  It is very individual and depends on how much overgrowth of pathogenic microbes the person has in the gut."   She goes on to clarify that you should always work with a knowledgeable physician to find this therapeutic dose.  And also, once the therapeutic dose is achieved, that someone with a gut dysbiosis will need supplemental probiotics for life (whether in pill form or fermented foods) as the gut flora is established at birth and probiotics will not colonize this established resident gut flora, but will flourish alongside it to give the benefits of beneficial bacteria to control the pathogens and correct the dysbiosis. 

I am pulling pieces from Immunology, Allergy, Digestion, Gut-Brain connections....all add up to the pieces in this FPIES puzzle.  Dr.J and her research at the PCRCD is giving us some light into the puzzle - not only from her research but from her multiple articles written on the subjects of gut dysbiosis and Non-IgE food allergies.  But also, I am looking for, and finding pieces to the puzzle in other places too.  Every one's puzzle is unique to their own genetics, environment and nutrition. Every child has their own unique-ness in their own puzzle.   We need the base to the puzzle in order to even begin to solve it.   But what is that base?  What happens first?  The Immune dysfunction?  The Gut dysbiosis? The immune dysregulation from the gut dysbiosis?  The gut dysbiosis from the immune dysfunction?   Will we ever really know?  


As I mentioned in my previous post, Little man is on a homemade hemp milk formula that meets his macro nutrient needs but is missing micro nutrients.   I have searched and searched for months to find a vitamin and/or mineral supplement that is corn free....I have come to the conclusion that there is no such thing.   There is still a possibility of getting some vitamins compounded but we keep asking ourselves a very important question....if so much of his diet is true nutrition, from the food- why should the rest of it be synthetic?   Why not fill in his gaps with FOOD, actual food?  

Well, that is a very easy answer....his body won't accept food either.    We risk a reaction, but if you can remember- we already tried a multi-vitamin and what happened?  We GOT a reaction.    So, if we're going to risk a reaction anyway, we want it to be on actual food.  Actual food that he can develop his oral motor skills on, that can fill his tummy so he isn't hungry at night so he can rest more.   Actual food that his body can get nutrients from, that fill in his tiny menu. 

This is where bone broths begins to come into our picture.   You know how God puts things in our path and then He keeps throwing it in the path until we finally "get it"?    Well, I have come across this bone broth, liver formula, healing effects of broth, from multiple sources over the past few weeks.  A few other FPIES moms have already started it and having success with it for it's anti-inflammatory and healing properties.  

Little man doesn't have any active inflammation (verified on last scope) but he does need more in his diet that help build his anti-inflammatory mediators.   Essential fatty acids, Probiotics, and vitamins/minerals are all things in our diets that can help build our anti-inflammatory mediators.   We have essential fatty acids in the hemp milk, we have started the probiotic, and now we need rounded minerals.    Bone broth, made from bones of animals (corn and soy free) will provide a two-fold effect of nutrients and anti-inflammatory properties (much like his hemp milk does for him).   We have a local farm co-op that has grass/pasture fed (soy and corn free) animals where we will purchase bones from and make some broth.   There are also places to purchase this online (through Amish farms), already prepared....which is a temptation with the chicken as they boil heads and feet....but chickens eat some corn, so chickens are a no-go for Little Man right now.   Maybe we'll have to raise our own.  For now, we will purchase lamb, beef, and maybe buffalo.  We will start with the broth, and move towards a full meat trial if broth is tolerated.   

It is my hopes that by filling in his gaps- the probiotic, the micro nutrients, we can begin to strengthen his anti-inflammatory mediators and begin to see more food passes, and less assaults to his system.

If he doesn't eat formula, what does he eat?

I get this question a lot when I simply say, he is allergic to food....and can't even have formula.   It usually takes a minute for this to set in, I can see the wheels turning- trying to process what a baby on no foods could survive on if not breast milk or formula.  I think it is harder to process because they are looking right at him, he doesn't look like he's starving? is what they probably want to say!   I don't let them suffer for long, I continue on....he is on a hemp milk formula I make for him.    It is not complete nutrition but he is not allergic to it, he has grown and gained weight on it and thriving developmentally.   And...he loves it! 

I began the process of making my own formula for him when I discovered he was sensitive enough to react to the elemental formula's, that by giving up nursing to put him on an elemental formula- I had made him more FPIES moms worst nightmare.   It is rare, but it can - and does- happen.  Little man is not the only one, and with the growing number of people discovering that corn is at the root of their illness, it is my hope that one day there will be a corn-free elemental formula.  But as of today, there is not.   So, I must make was the only way to take away his daily pain, his random vomiting sessions, his terrible diapers, his colic and gas-disturbed sleep.   And not only that but to add in increased intakes, and healing.   Hemp milk has provided this for my Little Man.   

It has taken months of tweaking, and while the formula is now at ~22cal/oz; and meets all his macro nutrient needs (macro nutrients are the bulk of our diet- calories in the form of carbohydrates, proteins and fats); it is still lacking in some micro nutrients- mainly B vitamins since Hemp is a plant protein, but also a few others (micro nutrients are vitamins and minerals). When starting the formula, our goals were to just make sure it was adequate in macro nutrients and that it is.  

The ingredients of this formula to meet those macro nutrients needs?  
1. Hemp milk is the base with Hemp high protein powder for added protein.  Hemp is a super food.  For an article on the benefits of hemp: Hemp Seed.  
2. Safflower oil provides a low-allergenic fat source.
3. Arrowroot is a well-tolerated starch.  Although well tolerated, little man does not tolerate it in the starch form,  I have to make it into a syrup.

His formula is adequate but not optimial.   Micronutrients would make it optimal.  Where do we get the micronutrients from?   His diet....but we have been unable to give him the tiny menu to do this. 

Saturday, February 26, 2011

My Kitchen...

I love to bake, always have.  I enjoy cooking meals for people, always have.  I don't mind spending time in my kitchen.   When we moved in to our house 4 years ago, one of the perks is the nice big kitchen - lots of cupboard space, plenty of counter space, eat-in style kitchen.  

Now?  It's my least favorite room in the house.  I have to spend hours in a room that Little Man should just be avoiding right now.  It is a walk - through style kitchen so there is no gating it off.   We have always had to keep a watchful eye on on little man,  so he would not find crumbs, or eat soap, or a candle, or dirt, or sheet rock....

So, he is always near us.   If I am in the kitchen, he is two steps behind me.    But what is there for him to do in the kitchen?   Have a snack?  No.  Help me cook?  No.  Go through my cupboards and "re-organize"?  Yes.  "Wash" dishes?  Yes.  In short- make a job while I do a job.  Yes.  It just seems at every turn with this illness is a new challenge, and not all in the form of food trials and nutrition!

I do look forward to the days when I am spending more time in the kitchen cooking food FOR him.  He DOES like to help cook, and I do try to include him when I can but with so many unsafe foods- it isn't as easy as it should be, as easy as it is with his brothers.  Until that day, my cupboards will remain an un-organized mess, the floor will be wet from splashed water from helping with the dishes, and we will continue to look for creative ways to make him feel included in a room that doesn't include him.....

Friday, February 25, 2011

Pros of Probiotics

There is SO much information on probiotics, from research studies to yogurt advertisements to health claims of yeast overgrowth control.   I wanted to find a quick/easy read that would sum up the good information well, I did find this article on the: Pros of Probiotics, but to sum it up....

Probitoics can help restore your good gut flora.  

Good gut bacteria aids in: digesting food, producing vitamins, preventing infections, and regulating the immune system. 

This alone tells us why probiotics are so important to the health of an FPIES child.   Finding one free of triggers (even trace amounts) and strains that are tolerated (due to extreme dysbiosis) can be a challenge.  

We begin our journey with gut flora in the birth canal, and it is further established in breastmilk.  These are critical times for establishment of gut flora since babies immune systems are still developing.   

Studies have proven the beneficial effects of specific strains of probiotics on viral and antibiotic induced diarrhea.   More studies continue to show the health benefits.  Probiotics balance the immune system, they grow and flourish in the GI tract but their benefits travel through the body.  

Without good gut flora, digestion and absorption of nutrients can't proceed naturally.   The increased acidity of the GI tract (from good gut flora) protects against yeast.   Candida albicans yeast grows and spreads when good gut bacteria fall. 

Factors that can make gut flora decline: refined foods, antacids and other acid-lowering drugs, intestinal flu, colonoscopy (cleansing for), antibiotic and steroid drugs, and stress.

Intestinal inflammation is reduced by good gut flora.   Inflammation that can cause tiny holes in intestinal walls and allow larger proteins to pass through into the bloodstream, resulting in a toxic effect.  

Good gut flora protects against bacteria, infections, enhances WBC activity and supports cytokine production (so cells can communicate effectively), as well as cancer prevention.

The beneficial bacteria manufacture nutrients in the body such as amino acids, antioxidants, B complex and Vit.K, short chain fatty acids.    Fermented foods make nutrients more available for absorption in the body (functional foods). 

And finally, this particular article outlines this final recommendation that is echoed in the literature:  
"Nutritionist Betty Kamen, PhD, calls live culture probiotics (available in a yogurt-like mix or nondairy medium) the "gold standard." But she also recommends dry capsule products for a mix of different species. "Ideally, the probiotic supplement you choose should contain L. acidophilus and/or other Lactobacillus strains and strains of Bifidobacteria," says Dr. Earl Mindell. "Probiotics are safe even in doses far greater than anyone would intentionally take," he adds. However, anyone with severe immune dysfunction or any life-threatening disease should use probiotics only under professional supervision."


Before we knew anything about FPIES or what was affecting Little man, I knew in my gut two things - after stopping breastfeeding....he needed a good probiotic and good essential fatty acids (EFA) for anti-inflammatory benefits as his first endoscopy confirmed my concerns and showed "non-specific" inflammation.   

Essential fatty acids (Omega 3): I initially tried some fish oil- last March.    They were free of dairy/soy contaminants; and at the time that is all we knew of his triggers.   They were a high quality brand, that I had obtained from the chiropractor.   Unfortunately he had symptoms from them, after 3 doses...I don't remember all the symptoms (no food logs at that time) but the two main ones I do remember were disturbed sleep, and a rash (tiny hives) on his face.  At the time, we assumed the fish contamination could be the culprit and just stopped them.   I still have that bottle and looking at it with FPIES eyes see there are other ingredients that could trigger an FPIES response: cod liver oil, flaxseed oil, extra virgin olive oil.   At this time I feel he either reacted (IgE) to fish (disturbed sleep and hives) or he reacted (either IgE or FPIES build) to olive oil.    We won't be trying either anytime soon.  

Hemp milk has excellent Omega 3/Omega 6 ratio, a good source of EFA's...a super food, a functional food.  I sometimes wonder if that is why he did not react to it?  Very high in EFA qualities that his body needed to support hsi anti-inflammatory mediators.  

The next thing we attempted is the probiotic.  I knew about his dairy and soy triggers and we were just beginning to move away from the corn triggers, and found this one: GI ProInfant by GI Pro Health ; which has a great profile of Lactobaccilli and Bifidibacterium, multiple strains.   Other ingredients:  Inulin from chicory root and proprietary polysaccaride complex.   This was pre-FPIES diagnosis where I checked the SOURCE of any and all ingredients to be sure they are not derived from his trigger foods (very common to find something derived from corn!).    I think I did find out that this product was cultured on dairy but the dairy proteins were removed (common with many probiotics- ALWAYS check the source of ingredients and always check where yogurt is cultured on- it could be dairy, it could even be rice!  I now know this is not good enough for very sensitive FPIES such as Little Man, but I did not know that then and so we trialed it.   He did not tolerate it and we assumed it was the chicory root because it seemed to be tummy/gas pains then FPIES trigger (dairy derived).

My previous train of thought isn't that more is better but that you simply wanted good combination of active strains.   Probiotics are bugs after all, and keeping them alive can be a challenge- they need a good medium and require refrigeration...some brands "seal" in the strains in processing but in general- the longer the shelf life, the more likely to have less alive bugs by the time you consume them.   Having them live on fermented food is ideal.   The food will also act as a PRE-biotic.   A prebiotic is essentially the food for the probiotic to survive the stomach acid to deposit deep into the intestines where they will colonize with other bugs and live and thrive happily!    Fibers are good pre-biotics, inulin is a popular fiber for manufactured (pill) probiotics.  The most common one being chicory root, although there are other substances that can be used (tree fibers) to make them hypoallerenic and well tolerated.

After he did not tolerate the GI ProHealth Infant, we tried a yogurt starter from the same company - again, we were feeling it was the inulin he was having trouble with.   I successfully made yogurt but it didn't take much for him to have reaction symptoms(yogurt-starter blog post); so this was abandoned as well.    We have not tried another probiotic, until now.    I did extensive searching and found CD Biotic from Kirkman Labs that looked promising, I have spoken to the company and found out the ingredient sources, I also purchased a Bifidibacterium strains one and there they have sat- in my refrigerator....too afraid to trial them and have a fail, to afraid to have a fail on a non-food item when we needed to be trialing FOOD.  Too afraid to over-dose him or under-dose him, or give the wrong strains.   

Dr.J recommends probiotics; she wants us to start with a single strain of a safe probiotic or even get it compounded.  A good candidate for a single strain looks to be Culterelle; but I have Kirkman's in my fridge, calling my name for I decide that even though it is not quite single strain- that we will start here.   I open the capsule and give him approx. 1/3 of the powder mixed in a tiny amount of his hemp milk and syringe fed to him.   The first 2 days, he loved it.   The 3rd day I got crazy and mixed part of it with coconut oil....I am not sure if he ingested it as he spit it out all over the kitchen!    I'm thinking coconut is a no-go for now.....and as the day wore on, my fears kept climbing about coconut.    He has, of course, had it before- but we haven't called it "safe" yet.   With that day's symptoms- I will not be trialing it again until we have the opportunity to trial it alone.   For now, we continue with the probiotic.    He seems to be tolerating it ok- we aren't completely symptom free but the symptoms we're seeing aren't all bad, and I'm not sure yet what to make of them except that they are symptoms of his dysbiosis being corrected...we will see what the next days bring.  

Tuesday, February 22, 2011


Sleep, precious sleep....what is that anymore?   We have always had problems with Little Man's sleeping.  Well before FPIES diagnosis, or even before he was getting sicker by the day- he had disturbed sleep.  He was only 10days old and he was keeping me up at 2am, wide awake.   This was unusual already- my other boys would barely open their eyes at night, just enough crying to let me know their tummy was hungry and I would quietly nurse them back to sleep.   Since my first born, we have always kept a twin bed in their nursery - it makes for easier night time nursing sessions....often we would both fall back asleep until the next nursing session would wake us up.    This only lasts a few months and after my first, I really learned to simply cherish it....they are only so little for such a short time.  

My first born was also a difficult napper- he would only sleep for 45min, unless he was being held- then we could get a longer nap in but that only benefited the holder if you needed a nap too!   Naptime = mommy down time....get laundry done, dishes done, make dinner, or just simply relax!   This was hard enough with just one add 3 more boys to the mix and having to hold an infant for his naps gets challenging in more ways than one!   But that quickly became our routine by the time he was at least 3-4mo.old- he would sleep best if we held him for his afternoon nap.  For whatever reason, his morning naps were fine- but the afternoon nap required holding, patting, rocking, squirming, nursing, rocking, patting....just to get the much needed rest that an infant needs....and he was still fussy in the evenings but without that nap he was a bear.  So, that is how we did it - his daddy or I would hold him so he could get his rest (being that his night time was such a disturbed sleep mess, I usually needed a nap by then anyway)!  

This disturbed sleep is one of the first reasons why we thought we needed to just move on getting the solids started, or supplement with formula, or something....which is what started the spiraling that brought us to the elimination diets and reflux meds, and GI consult and the endoscopy, and the elemental formula only diet, and finally the allergist consult to confirm the FPIES diagnosis.   Sleep remains disturbed through all of this but once we got his triggers under control we started to see a much better pattern to his sleep.  Still on a liquid diet, one would expect a growing toddler to need to wake to eat at night; so going to bed around 8-9pm, waking around 11pm-12am to take a bottle, back to sleep until 5-6am for a bottle and sometimes back to sleep but usually up for the day IS a decent pattern....and we had that....before our Soy challenge.  We've been trying to get back to that since.    We anticipated getting there with gut rest and 100% calories via IV (TPN) but instead things got worse and the night wakings increased, cries in his sleep, restless sleep.   That lasted for ~3weeks after the hospital stay.   Many people (doctors included) tried to say it was simply related to being in the hospital and that could be a component of it but we know there is so much more to it than that.  

We've had a sleep study that revealed...nothing.    Ok, so nothing is a good thing.  No abnormal apnea, no abnormal brain activity, no restless legs....nothing except a sleeping, dreaming little boy.  Until.....he woke up....actually they noticed (and I could tell too) that he was scared BEFORE he woke up.    You see a sleep study involves being wired to multiple (dozens) of electrodes on your legs, chest, face, ears, and head.   I would be scared too.  But I remained calm, for little man.  And we did our best with his night time routine and after almost an hour I was able to get him to sleep....and he crashed, but he must have been dreaming about being held down to have those electrodes glued to his body because he woke up and was mad, scared, thrashing and screaming.    He did not want his bottle, he did not want me, he just wanted to be free of all the wires.   Maybe it reminded him of the TPN and he was scared we were doing it all over again, or that needles would be coming.   My momma bear kicked in and I was done.   I pulled every electrode off and we left the sleep study after just 3hrs.    They were able to capture some data and I feel like it was enough- if he had sleep apnea or restless leg; it would have showed up in that time....and those were the two biggest things we were looking for.

So, the sleep study doctor did not have much input....except that we are already doing everything we can.  We have a calm bedtime routine, we've tried all the "tricks" for good sleeping....all except cry it out.   Each child is different and a mom knows when they are ready for cry it out....Little Man is not.   It would only add to the problem.  Actually the sleep study confirmed that- go to sleep scared and wake up scared.   He does not like being alone, he does not like being in closed rooms or small spaces- he never has.   But we have always put him in his own room so that noises wouldn't disturb his sleep but also so that his many night wakings would not disturb his brothers sleep.   Many months have passed and we have been getting him out of bed to bring him to the living room to sleep...and he sleeps better- but I do not.   So, one last ditch effort to just get us through this stage with better quality sleep for all- without making things worse in the process, we bring back the twin bed idea - where we join him in HIS room.   Teach him that his room is safe, is comfortable, is his place to sleep (and sleep well).    We aren't out of the woods yet but we have stayed in his room all night every night for the past days. 

Interestingly enough, he didn't have any foods for the 2days prior to the flight to NJ last week and the first night at the hotel - he slept 8hrs straight!!  Granted, we had some travel lag, the flight was rough with lots of crying, but he's had long days before and not slept through the night.   Just more confirmations that foods are upsetting his body homeostasis.  Another sign was the almost perfect stool diaper change the next morning.  His gut is in dysbiosis and we need to correct that or we will never get him foods, or sleep....

Sunday, February 20, 2011

Doing All Right for the shape I'm in....

Ok, it's no secret...I like do the boys.  And I guess country pulls at my heart strings the most..
The song "The Shape I'm In" by Joe Nichols always makes me think of how FPIES is such a silent illness.   How Little Man can be so sick on the inside but not show it on the outside....doing all right for the shape he's in...

It also makes me think of how much this illness takes from him....but how much he continues to give....doing all right for the shape he's in....

And finally, it makes me grateful for how well he really is doing, in spite of FPIES.   Developmentally, he is on track, socially he is on track.  Especially with a "malnutrition" diagnosis- Little Man has had several developmental evaluations and he always surprises everyone with how well he is spite of how much he has been through.   You read his chart, and expect to see a very sick and skinny little boy and instead you see a bright eyed, curious, active, smart, perfectly proportioned little boy.  

The song is not about a sick little boy with a rare illness. Actually it is about military wounded.   Our country's strongest men.  Our country's hero's.  Never give up.  Keep will make you stronger.  

Little man may be wounded by food at this point in his life, but one day- one day, this will all be behind us.   And we will thank FPIES for the strong man our little man is in spite of, because of,  FPIES.  We will thank God for putting this in our families path, for giving us the strength and graces to go through it.  For giving us the love, prayers, and support from family and friends at times when we needed it the most.  We will get through this....we have Faith.

Saturday, February 19, 2011

Our appointment at PCRCD....

Went well!!!!

We flew to New Jersey on Wednesday for a 10am appointment with Dr.J at the PCRCD on Thursday.   The appointment was running behind and we didn't get in until 10:30am but she gave us our full 90min appointment.    We covered a lot but do still have some questions- how does that happen?   Dr.J is very sweet, kind and seems to truly want to help with the knowledge base she has about Non-IgE food Allergy.

She wanted to collect some data from his history, and also labs from his history.  We started by telling Little man's story from birth, and of course that starts with an antibiotic course when he was only hours old due to my GBS+ and his quick delivery;  which clues her in right away that he likely has some gut flora problems.

She discussed how newborns are susceptible to the gut flora establishment, noting that premature babies are at highest risk. I discussed with her that I have noticed that it is either C-section birth, antibiotic use, or prematurity that seems to be a very common thread among FPIES and she agrees that this is exactly it, with a strong genetic component. She was interested that I have IBS and agreed that it is possible that my breastmilk had incompletely digested proteins (because of my IBS)- especially since he seemed to be better if I took probiotics and/or enzymes (even better than eliminating what I thought were his culprits- milk, soy, wheat). She asked if I took them regularly – which I explained that I take them pretty regularly but I need to switch it up – that my body seems to get a ‘cap effect’ from them. She said that was very interesting and note-able for my individual gut flora.  Response to a probiotic will tell a lot about your gut flora. Each person has their own billions of bacteria in the gut flora and responds to the environment and diet differently. There is no one way to test our gut flora as there are more strains than have been identified and also some live with air, some do not survive once exposed to oxygen so there is not reliable way to test it all. Watch for signs such as yeast overgrowth, tolerance mechanisms, response to antibiotics and probiotics are all clues for gut flora.

She suspects his gut flora is a big missing key. Once we re-establish his gut flora, it will not only provide the protective barrier and homeostasis but also support the anti-inflammatory mediators (this is a piece I was missing – I did not know that gut flora promotes anti-inflammatory mediators). She recommends he be on lactobaclli and maybe a bifida bacteria but just a SIMPLE and LOW dose- starting with single strains. This is based on his gut flora responses to foods introductions and mostly his inflammatory responses- his delayed reactions!! We discussed how he has “honeymoon periods” with foods- from the start of food introduction. She describes he is prone to delayed reactions because of his oral tolerance mechanisms- he DOES build the intolerance via inflammation because he lacks sufficient anti-inflammatory mediators (supported by good gut flora).

We went on to discuss his immediate responses to dairy based formula, and how the more I gave it up in nursing (wheat and dairy)- the more I would notice his intolerance's with reintroduction of foods (via breast milk). She confirmed this is the FPIES mechanism.

We talked about his soy intolerance, and soy challenge- she said Soy is a culprit in PI kids not because it is closely related to dairy proteins but because it is such an antigenic protein. She said she stays away from soy unless the child is already tolerating it but she never risks the possible allergy from it because of it being so antigenic; she goes right to elementals. I discussed how we tried hydrolyzed formula- Nutramagin and she explained how hydrolyzed it not broken down enough proteins for FPIES triggers and was not surprised he did not tolerate it. We discussed his reactions on elemental’s and although she notes it is rare to not tolerate an elemental- she was not surprised by it either- given his continued and worsening symptoms while on it.  I described to her how he stayed vomiting on Elecare and how the vomiting slowed down some on Neocate but that he would self –restrict and she noted that “these kids are smart, they know…” (something us moms say all the time!). We discussed how I came about Hemp milk and how Dr.P at CHOP had recommended it since Little Man was almost 1yr.,that 2 weeks on hemp milk should have calmed down his inflammation enough to get a tiny menu. I discussed with her that I wanted to build a formula instead of plain hemp milk and how he reacted with dumping dehydrating diarrhea that landed him in the hospital with low blood sugar and acidosis from tapioca starch; and how his tapioca trigger was confirmed with reintroduction in a Vit.C supplement. And how at that time, a scope was done and he showed what was described to us as “inflammation looking like the gut from a malnourished child from a third world country”. She fully agreed that this was from the Neocate; and that his symptoms while on it, with these scope results would confirm the Neocate triggering his FPIES.

I also brought up his recent reaction to the multivitamin with fermented corn starch derived Vit.C and how the scope after it did not show inflammation and she said inflammation wouldn’t be there with one trigger reaction but with repeated exposures (for us, corn syrup). I talked a little about his iron deficiency and requiring transfusions but forgot to ask her what she thought iron deficiency could be attributed to as little man is not the only FPIES child struggling with maintaining adequate iron levels and my instincts say there is more to it than intake and losses.  We did discuss his response to oral iron and she agreed this would have made things worse, on a sensitive or inflamed gut; and his good response to IV iron infusions.

We then discussed his villous atropy and TPN. I told her how he gained good weight on it and scope showed good gut healing from the gut rest. I also asked her what she thought about symptoms such as red rosy cheeks, hyperactivity, disturbed sleep and small facial hives- if it was possible for him to react to something in the TPN as I suspected he was (although noting that the benefit was still outweighing the negatives in this case as he needed and was responding well to the nutrients in the TPN). She agreed that T cells are everywhere- and can and do react to more than just gut ingestion's but that with it being in the blood and broken down, the chances would be slim (I said- yes, I believe we were sneaking past the gatekeepers (Tcells) and she agreed. She also complimented me on my knowledge and research- I told her I’d read her article! (Non-IgE Food Allergy).

She said it sounded like his mechanisms are very much Th1, TNF-a, and IL-17 (or was it IL-10?)....more on this in another post.   Some puzzle pieces just spilled on to the floor- did you see them?   I think those may still be blurry until we get the blood test results back...

She wanted to know if he was clear of IgE allergies?  And he is, and I am relieved as I’ve read that that can indicate severity of outcomes (how long to outgrow).  She replies that that is correct and inquires if that was SPT or RAST?  Little man has had both, and all were negative for IgE at the time. 

She theorizes that his condition of resistance is very much TNF-a or something like that, his condition is almost like his reaction is capillary leak….little bit more water that comes to the lungs and you get the wheezing. Oh my goodness- did she just describe the asthma/reflux cough so many of our kids experience??  Pull the trigger and it goes away, don't pull the trigger in enough time and it sets into an infection for the fluid in the lungs?  Wow, another piece to the puzzle....I need to research more on that piece...
She goes on to say that steroids can be used with some of the inflammatory cascades. I replied- yes, I’ve read that but steroids are so harsh and can contribute to problems with gut flora and we already know he has issues with gut flora. To which she confirmed that steroid is good but that she doesn't like to use too much.

We then discussed Probiotics- for gut immunity.  Some people benefited from single strains or the probiotics would act as their own antagonists.  She is worried about finding a corn free one, and suggests checking with the company; or we may have to compound it. She goes on to say, sometimes the compounding pharmacy can be expensive, but with this type of baby it will need to be compounded.

She was interested to know if we had tried enzymes with him, since he had responded well to my milk when nursing him when I took them, but we have not because I have not found a clean one yet….which she agreed that would be difficult with his triggers. She brought up vaccines, saying the live virus vaccines (such as MMR) would not be good for him. We do not vaccinate so is not a concern for us. We talked about my 2nd son’s reaction to vaccines, and his “issues” to which she thought it sounded like a PDD as well. 

She said she sees High Functioning Autism and PPD with food allergy a lot- particularly because the intolerance's affect their condition too. 

We discussed the family history of the other boys’ MPI.

We then discussed Sam’s developmental milestones, noting that he is doing well for all that he has been through. She is surprised he is doing so well since he is missing micronutrients in his hemp formula and noted that the micronutrients will also affect the colonizing bacteria. (this piece I had but it wasn't in focus....still isn't clear because even though I know he needs these micronutrients, simply willing him not to react to a mulitivitamin isn't enough. 

We discussed some of his reactions symptoms- his anger/irritability, etc. She said that is all normal for NFA kids because they just don’t feel good.

She asked if he had ever been on an antibiotic, to which I replied no but that I was curious what one he would tolerate anyway and she recommended Rocephin. Thankfully he has not needed one yet.

We discussed the susceptibility of the kids to get colds following reactions….noting the inflammatory markers.  She agreed that they are more susceptible when reacting to a food...that is over whelms their immune systems.  She goes on to say that their Immune system is a over-reacting one, which is very protective for the infection; which is good but tolerance is a problem, a homeostasis problem.

She then examined him- and we talked more about the brain-gut connection relation to ASD and FA; but didn’t go into details; as she was examining his mouth and he stuck out his tougne I remembered I wanted to ask her what she thought of the yeast connection as he tends to get a “flare” with food fails. She said there is a yeast component that is likely activated following antibiotic use or disturbed gut flora and it is related to the homeostasis in their guts, stating the homeostasis is broken. Her theory is that his problem is not yeast overgrowth but that it is the body’s over reaction. She emphasized that everyone is different. She talked about her theory that the mechanisms are the same but with environmental and genetic components altering the reactions (as she described this- she motioned in a V with her hands)- there is a ‘base’ for everyone and then everyone’s path is very individualized is her theory. She advocates that the very difficult child just needs to be individualized for treatments.

If we correct his gut flora, we will get the control and homeostasis of his yeast? Yes, homeostasis with the probiotics is very good,…..lactobacilli strain.

We then spoke about the study and consent and what she is looking at (cytokines, TNF-a and response to gut flora), that she will need to draw blood and we will get results in about 4weeks time and she will communicate results to me.
Immune response or impaired gut- which comes first? (her answer was difficult to understand and I don’t remember what she said!) But she thinks his issues are linked to his gut flora. If we can correct his gut flora, we can downgrade his over-reactive immune responses.

We talked about research and how the ARI is funding her current research study because it is about ASD with food allergy compared to ASD without food allergy and then the control of non ASD with food allergy. She noted she would love to do a study on just FPIES and is excited to hear about the CHOP fund and be in communication with Fallon about it. I commended her for the research she has done for the ASD community.

TNF-a….she discussed how it is not just TNF-a but the balance between the TNF-a, TGF-b and the commensural flora, how does it all react together? It is a very fine tuning with these kids, very individualized. She kept emphasizing the homeostasis and the individualization.

She thinks Little Man's case has several hits- with immune system, MPI in siblings, antibiotics at birth, genetics.

I asked about rotation diet for future trials, would he benefit? Can we teach the body tolerance mechanisms? It may work once we get the probiotic factor and re-establish his gut flora homeostasis…again, emphasized that for our Little Man it is important to do a single strain at first and get it compounded if you need to to avoid corn.

Also, he may benefit from oral steroid – With his tolerances mechanisms, and his reactions to “non-specific components”, he may have trouble tolerating probiotic is her suspicion so he may need an oral steroid to be able to tolerate the probiotic and move forward (NOT long term or heavy dosages).

So, for Little man, she recommended to start with lactobacilli (as this is generally well tolerated)-in VERY small amounts and build up; then try to add a biffidi strain if he tolerates lactobacilli and consider oral steroid granules in small amounts if unable to tolerate Probiotic. She notes, the multiple strains is really more for the IBD patient, they are very different and more TGF-b and she does not think he will tolerate the higher strain probiotics.

We need to see how he does first. Then get test results and go from there. She made and gave me copies of the info on the study.  This is what it reads: Title of the Study: "T cell polarization and candida reactivity in autistic children with food allergy. Why is this study being done"  Autism Spectrum Disorder (ASD) is a complex disease affecting development of speech and is usually diagnosed when children are young. Many ASD children suffer from other medical conditions. Among them, gut symptoms caused by delayed type food allergy and sleep problems are most frequently seen.  Treating such ASD children with food allergy (FA), we observed that these ASD children with FA do not respond well to avoidance of causative food as compared to non-ASD children with FA. In this study, we want to address why ASD children with FA do not get better after avoiding problematic food like other non-ASD children with FA. For that purpose we will check whether body's immune responses to normally present gut bacteria/fungi are altered in these ASD children with FA, and if these conditions are preventing their recovery from food allergy." I posted information on this study in a previous post, from the ARI website.

We talked a little about anti-yeast diets and if they will work. She does not feel the yeast is the root of the problem for our kids and so it will not be enough.  That diets such as GAPS are designed to wipe the slate clean and re-establish gut flora; but an elemental diet should also wipe the slate clean.  We didn't go into it further as our appointment time was ending.  

We talked about how this is falling on Allergists to diagnosis and treat but difficult for them with some cases as they are treating it like typical food allergy when it really is multi dimensional; as well as individualized.

This is as much as I can remember from the appointment. There are more gaps to fill in from the information as presented here but that will have to come at a later time. It was nice to get confirmation to some of my thoughts on our FPIES. The things I learned that I think are big links to his missing puzzle pieces are:

1. The need for small doses of single strains of probiotic, starting with lactobacilli and maybe adding in bifidi bacteria strain if lactobacilli is tolerated.

2. That gut flora plays a role in the anti-inflammatory mediators

3. That he may need oral steroids to achieve enough anti-inflammatory mediators for oral tolerance if he does not tolerate a probiotic first.

4. That his oral tolerance/delayed reactions are a good sign that his body has developed oral tolerances, but that he lacks enough anti-inflammatory mechanisms to help the body continue the oral tolerance (Th3)

5. Capillary leak- a definition for what his body experiences with the food fail, shock (delayed shock) and how it is connected to his CBC changes as well as his lung/wheezing/asthma response because of it.

6. That he may benefit from enzymes and rotation diet….but nothing until we establish a homeostasis in his gut flora.

The blood tests will fill in more gaps when they come in….so we begin by implementing the Probiotic (as soon as I find a single strain, corn/soy/dairy/rice free one), and see how he tolerates it.....stay tuned!

Thursday, February 17, 2011

Resolved Heroes

My wife and little man, as he is called here, are currently in New Jersey seeking answer to a problem that seems to have no answers. Little mans condition or illnesses, has perplexed, saddened, and enraged me to a point I never thought possible. How can something as simple as eating food be so bad? I know that some of you that read this blog have children in the same boat as little man, so you know exactly how I feel.

After ten years in the military and now five years as a firefighter, I would like to think that I am one of the most resolved persons you would ever meet. I tell the boys that no matter what, we never quit. That dose not mean you won’t fail at some things along the way. If you learn one thing every time you fail, you have not failed. You take that knowledge that you didn’t have the last time and you go at it again, and you never quit. If there is something in your way, you go around it, over it, under it, and through it if need be. But no matter what, we never quit. My wife has taken this train of thought, that I thought she never cared for, to a higher level that I didn’t think possible. So many times I have sat in a room surrounded by the most educated doctors telling me how we need to treat little mans condition. And so many times I have thought that these doctors are the most educated stupid people on the planet. But as they corner us, tell us what we have to do, and try to scare us with horror stories of tubes and malnutrition. My only thought is to knock them on their butts, (through it attitude) because I know what they are telling me is wrong, what they want to do is only going to make little man worse. In steps my better half. Not really better half, more of a better me, period. My wife has in my eyes become the foremost expert on FPIES. She has spent the better part of the last year standing toe to toe with everyone that stands in little mans way. When the doctors start thumping their chest and say we have malnourished little man, my lady thunders right back. Not with pure insults like her husband, but well educated resolve. She has become the only lifeboat that little man has in his storm of FPIES. She has read and reread hundreds of medical files, tests, and everything else she can get her hands on. Sought out people across the nation for answers, and now she is in New Jersey steering little man to a place of hope.

My dad will always be my Hero. As a father of four young men it is my fondest dream that my boys would look up to me, like I did to mine. I grew up with mild to server asthma. I remember the skin testing on my back, the IVs, and my dad always slumped in a chair in my hospital room when I woke up at night. It was my dad that would run into my room with my inhaler during an attack, counting off with his fingers to show me when I could stop holding my breath. Recently I have found that my dad is not my only hero. Doctor visit after doctor visit I have seen little man weather everything thrown at him. It seems he has given up more blood to tests then I have donated. It didn’t bother me the first time or the tenth or maybe even the fortieth time I had to hold him down during a blood draw. Now I can barely stop shaking every time I have to do it. And yet after every test little man grabs for me calling my name, looking for comfort in the one that was helping hurt him. I so desperately want to be the hero for him that my dad is for me. But I have it backwards, little man is the hero, and not only him but my family as a whole. My other three boys have given up so much during little mans journey. Through it all they have not once said anything bad towards little man. It seems little man and his brothers are connected in a way that maybe I will never understand; connected in a way that only brothers understand. Lead by four little heroes and one resolved lady FPIES is an illness that can be overcome, because these five people will never quit. Have hope.

Tuesday, February 15, 2011


This week, we are going to see Dr.Jyonouchi (Ja-nouch- is how her assistant told me it is pronounced but she said they often call her Dr.J).   She is head of the PCRCD (Pediatric Center for Rare and Complex Disease)- she is currently doing a research study.  I found some information on one of her current studies here: Autism Research Institute.   

The study is titled "Th cell polarization and candida reactivity in autistic children with food allergy".   This study is described as "Our previous study has shown that a high percentage of ASD children with GI symptoms reveal evidence of non IgE mediated, delayed type food allergy (NFA) against common dietary proteins (DPs) and their clinical features are similar to those in non-ASD children with NFA. In infants, the gut immune system is immature and oral tolerance develops slowly during the first 2-3 years of life. Thus, most non-ASD/NFA children outgrow this condition by 3-4 years of age. However, ASD/NFA children appear to require a longer time to outgrow NFA, indicating a possibility that ASD/NFA children have immune abnormalities rendering them more reactive to ‘harmless’ luminal antigens (food and commensal flora.) In this study, we thus hypothesize that dysregulated gut mucosal immune homeostasis is associated with altered innate immune responses that affects development of T-helper (Th) subsets. There are two specific aims for the current study: (1) Assessment of Th cell polarization in ASD children with NFA by intracellular staining of lineage-specific cytokines in Th cells. (2) Assessment of anti-inflammatory Th cell responses in ASD children with NFA by measuring production of counter-regulatory cytokines in response to specific luminal Ag in comparison with responses to stimuli of innate immunity. Our long-term objective is to assess immune abnormalities associated with oral tolerance in ASD/NFA children. Obtained data are expected to be helpful for identifying risk factors for development of NFA and dysbiosis in autistic children."

Wait, you say, but Little Man does not have autism, or any autistic symptoms?  No.  He does not.   However, I have seen a connection.  This doctor has noted the connection.  I am anxious to meet her and hear what she has to add to our puzzle.   Autism is a puzzle as well, food allergy can be one piece of that puzzle.   The same abnormal response to food proteins our Protein Intolerant children experience, is what some percentages of autistic kids experience as well.  

In this paper: on Food Allergy by Dr.J she speaks about this Non-IgE food allergy.  It is a comprehensive paper in which she also describes IgE vs. Non-IgE food allergy and a worthwhile read.   She does note that in her research and findings that she does not see an increase in non-IgE food allergy in the autism population but just that their symptoms are not addressed correctly, or misdiagnosed because of the complexity of other symptoms of their Autism.  Adding to that that many autism kids are non-verbal for many years makes it difficult to assess their symptoms.   She goes on to discuss further the possible effects of allergy on cognition and behavior.  There are many reported successes with implementation of a dairy/gluten/soy free diet for autism spectrum disorders, not all kids respond to the diet but many do.  The parents are noted to have said "it is like a veil is lifted" when the offending foods are removed.   I find that very interesting as I watched my Little man recover when we removed all his allergens, once corn was finally completely removed from his diet - I even said the same a veil was lifted....a veil a mother knows is there but no one else can see.  A little boy trapped underneath the inflammation inside his body.   Not autistic.  Symptoms from the food allergy response in his body, also experienced by autistic kids, that further complicate their response to other treatments.    I also find it interesting that many of Little Man's symptoms to food failures are: disturbed sleep, hyperactivity, mood swings, blank stares....there is a gut-brain connection.  Dr.J's research is defining that.  

The above mentioned current research study may not be the exact one Little Man is participating in, I will find out more about that when we get there but it is along this path.   I also have reviewed many of Dr.J's other papers and studies and feel we really will have some knowledgeable assistance for our puzzle.   Like I've mentioned before, her article on Non-IgE food allergy alone has helped me work my way through the puzzle; but executing/testing for/and applying her mechanisms to Little Man has been the delay.  Now, to have the opportunity to her personally apply those, in her clinic consult and research study.  To think that Little Man's severe protein in tolerances will help her study and understand more about protein intolerance and also about how it affects autism is inspiring. 

I have so much more floating through my head, but want to break it up some (for readers and my benefit!).  As I continue to prepare for the appointment, I continue to take notes from my readings and think of questions I may get a chance to ask her....I get more and more anxious and excited to get to Thursday's appointment!! 

I really do have hope that there is a piece of our puzzle there in NJ, and am hoping and praying that the quick trip out there to pick it up will be worth it.  

Sunday, February 13, 2011

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 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- 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 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 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?

Saturday, February 12, 2011

Nutrigenomics...we really are what we eat.

As I sort through some articles I have been meaning to read, as well as online resources about research Dr.J has done to prepare for our upcoming appointment. I come across a home study guide I purchased at a seminar a year or two ago.   It is called "Nutrigenomics: The Scientific Link Between Genetics and Nutrition".   Yes, I've been meaning to complete this for awhile now, maybe now is the time.  The home study course is put out by the Institute for Natural Resources and I am unable to locate an online version.   But I did find this link that outlines much of the same information:  Nutrigenomics

I wanted to share a few key thoughts from the INR home study course as I thought was interesting and helped "kick start" some of my direction in readings this afternoon.  I also wonder if it isn't part of what Dr.J's research is coined.

I feel like I understand FPIES, I understand leaky gut/dybiosis (not only from my own research but mainly from living it everyday); but I'm missing something and that something is what I want to discuss with Dr.J....but I need to organize my thoughts first (maybe I'll get my answers in my own readings!).

The article begings with a great introduction essentially introducing you to the world of nutrigenomics...did you ever wonder what it would be like if we knew what we could and couldn't eat from the day we are born?....or if we knew what we were predisposed to and could alter our eating habits specifically for those diseases. (Diabetes, heart disease, Cronhs, Cancer).   We may be able to with combining the worlds of Nutrition and Genomics.  "Nutrigenomics tries to determine the influence of common dietary ingredients on the genome and relate the resulting phenotypes to differences in the cellular and/or genetic response of biologic systems.  It analyzes the response of whole systems to nutrients and studies how food or food ingredients affect the metabolic pathways and alter gene expression".  

A major project took place from 1990-2003: The Human Genome Project yielded this field of nutrigenomics.  "Information from the human genome is making it possible to identify the genetic factors that influence a person's susceptibility to disease associated with diet.....In dietary related disorders, these interventions will involve dietary changes or the inclusions of functional food components, or both."

"Genes evolve in response to many types of environmental stimuli including nutrition." (genetics loads the gun, environment pulls the trigger).   There are genetic markers for many chronic diseases, one has not been found yet for FPIES but it is clear from the research thus far that there is a genetic component.   But what component turns it on?   It is the maternal diet?   Is it the infants diet?   Is it the gut flora?  It is antibiotic use?  Dr.J's research shows that it is an abormal immune response and that there is a connection to gut flora (more on that later, oh- so much more on that later).  

The tools used in Nutrigenomics are multidisplinary: Transcriptomics, Proteomics, Metabolomics, and Bioinformatics.  
"Transcriptomics measures the level of expression of all or a selected subset of genes based on the amount of RNA in a sample, using mircoarray analysis to see how genes react to change.  Nutrients can have a direct effect and interact with transription factors to regulate gene expression."  
"Proteomics is the study of proteins that can be expressed within an organism.  Proteomics focuses on the analysis of proteins and their interactions with other biologic molecules>'
"Metabolomics is the study of the complete set of metabolites that an organism produces.  Genes are turned on and off according to metabolic signals that the nucleus receives from internal factors such as horomones and external factors such as nutrients."
"Bioinformatics handle the vast amount of data produced.  It is now possible to predict gene function and identify the regulatory regions in the genome that influence gene expression". 

Understanding nutrigenomics requires an understanding of the cell.   DNA is the genetic material of the cell, it is arranged in untis called chromosomes, of which we have 23 and genes are spread throughout these chromosomes. 

The study of nutrigenomics also requires knowledge of polymorphisms.   "A polymorphism is the quality of existing in several different forms.  These differences can result from genetic predisposition, environmental influences, or a combination of both.....Several genetic polymorphisms important to nutrition have been identified."  These can be catagorized into 2 catagories:
1). Monogenic Diseases, in which a disease arises from on abnormal gene, these can range from lactose intolerance to PKU or galactosemia.  
2). Chronic Diseases such as cardiovascular disease, diabetes, cancer, obesity, and inflammatory bowel disease. 

There is much research being done in all these disease states, my research goes toward Inflammatory Bowel Diseases such as Crohns as FPIES shares commonality's of immune regulators and inflammatory responses.  (again, this will be covered more in another post but does involve what Dr.J is researching).

The course goes on to discuss effects of micro and macro nutrients at the molecular level as well as the current dietary inteventions and guidelines for disease.   This is my job description in a nutshell so I skimmed over this! But essentially, nutrients have many roles in the body from influencing metabolism and physiology at the molecular level to fuel and co-factor roles.  The role of foods from macronutrients (carbohydrates, fats, proteins) to micronutrients (vitamins, minerals) play is complex and closely intertwined.   "Eat a balanced diet" is always good advice!  It does go on to discuss Dietary Inteventions and Guidelines and how with the possibilities of nutrigenomics, one could "tailor" their diet to offer precise dietary advice for specific genetic testing results.   Currently, genetic predisposition with generalized healthy recommendations are what we work with but this can be restricting if there are multiple genes interacting with each other coupled with environmental variables that contribute to the diseases.   

It continues to describe how bioactive food components "alter gene expression in a host of cellular events".

The paragraph within the functional food chapter was of interest to me, and I think will be to other FPIES families: "One of the targets of functional foods will be the gut, which acts as an interface between ingested food and the body.  In addition, the gut serves as the barrier to harmful substances entering the circulation.   Ingestion of functional foods will be beneficial to the microflora of the gut.   These bacteria, in addition to their protective function, generate energy by digesting fermentable carbohydrates.  The microflora of the large intestine is aquired shortly after birth, and its composition is dependent on diet.   We all have our own specific microflora.  Certain species of gut microflora can help reduce the risk of gastrointestinal infections, constipation, irritable bowel syndrome, inflammatory bowel diseases, and possibly colorectal cancer.   Therefore, intestinal microflora could be a part of a personalized nutritional program."  (which is what I've been told is part of Dr.J's program in her research study).   It goes on to describe probiotics and prebiotics.  "Probiotics and prebiotics could be developed to alter the microflora of the gut....a prebiotic is a non-digestible food ingredient that beneficially affects the host by selectively stimulating the growth and/or modifying the metabolic activity of one or a limited number of bacterial species in the colon that have the potential to improve host be classified as a prebiotic, a food must not be absorbed in the upper part of the gastrointestinal tract and must stimulate growth of the beneficial microflora that is resident in the colon.   Prebiotics also have additional benefits on the immnue system and may inhibit the formation of adenomas and carcinomas".

Little Mans main diet is a functional food: Hemp.   And we are working towards including good amounts of coconut, which is both a functional food and a prebiotic, in his diet. 

The conclusion is "Genes are turned on and off by what we eat".   "The interaction between nutrition and the human genome determines gene expression and the metabolic response".  

So, we really are what we eat....

Thursday, February 10, 2011

We're going as fast as we can...nowhere.....

One year ago, the last week in Feb., we took away all food from Little Man.   He was 8mo.old.  I also stopped nursing him and we changed him over to an Elemental formula - Elecare, as he was continuing to react to my milk despite going dairy/soy and then also wheat free.    Unfortunately I had no idea of a very real possibility of a corn allergy.   I did not know that his intolerance's of medications could indicate a corn trigger, or that when I gave up wheat and introduced more corn-was the reason he got worse instead of better on the elimination diet while breastfeeding him.  I was even feeding him some corn products!  But we were so lost then.  

Are we less lost now?   Yes, and no.   We've learned so much over the past year.  If I had known then what I know now, we could have really saved Little Man some pain....but that wasn't God's plan.   We have to keep remembering we are mere servants to God's plan.  My Faith is the only thing bringing me through some days.   Days I've had recently where I am emotionally and physically drained.   Going at this moment by moment.  We're going as fast as we where. 

Every food we try, he reacts to- usually by day 3.  Sometimes there are early signs that it may not be going well but not enough to stop the trial....slow it down, keep it steady- yes but not stop.   And then it's as if the floor falls out from underneath and the symptoms build.  

What is going on?  Yeast? Bacteria? Leaky gut? Over-reactive Immune response?  Held off food for too long and now he's over-sensitized?  All of the above?   What are we missing?

I feel as if I am standing over a 5,000 piece puzzle....I have so many of the pieces in place but I'm still standing here with a few- and I can't find where they go.   The puzle looks complete, but did I put one in the wrong place?  Do I need to look at it up-side-down?  Turning, turning, turning those pieces to see where they match up.   It just feels like I'm so many, many hours of research and sleepless nights trying to wrap my brain around what is in the research and how it matches to not only my Little Man but to so many others who share similar experiences.  

I am optimistic that Dr.Jyonouchi at The Pediatric Center for Rare and Complex Diseases, and author of Non IgE Mediated Food Allergy can help me with these last puzzle pieces. I don't expect her to solve the puzzle- just help me to see how I can put the pieces in to fit so we can move forward once again.

Wednesday, February 9, 2011

Showers of Blessings with a sprinkling of Humility...

I would have thought of myself as already having humility.   But it is one of the lessons I believe God has given me on this journey....a lesson to learn and grow more, to learn of His handwriting all over our lives...accepting the showering of blessings from angels here on earth.  

Angels disguised as friends who offer to watch Little Man’s brothers for the day, after a particularly hard night of pain and sleeplessness (pre-FPIES diagnosis), a night that had been happening with increased frequency, followed by days that were more of the same.   Swallow your pride, accept the help.  It was hard to accept the generous offer but I put myself aside and thought of my boys and how much it would mean to them, and I accepted the offer. I began my lessons in humility.  

It continued when my sister moved in, to help, and when friends generously gave us their RV for us to take to Philadelphia so we could get Little Man to an appointment with an Allergist for a diagnosis, and a direction. Our blessings continue to flow… so many blessings- I will devote another post to, at a later date.   Please know, if you are reading this and you have helped me in any never goes unnoticed (by us or Him).

The blessings others have bestowed on us have been inspiring. The kindness of not only friends and family, but complete strangers.

But strangers we are not.

Common bonds we share.

FPIES families…..

A few weeks ago, I read a post on a support board from a mom who had taken her daughters to a clinic in New Jersey, The.Pediatric Center for Rare and complex diseases.  She reported good success with this Dr. at the clinic in helping guide her through her daughters FPIES and food trials. Another mom saw this post as well and called to check on it herself. She then shared this information in her blog post. They had an appointment for their son lined up. I read it. I began to wonder if it would be something we should do for our Little Man. I was familiar with the research MD, as she wrote this article on Non-IgE food allergy that grabbed my attention a few months ago. I have been dissecting through it and processing through all the information it provides, connecting the dots to what other moms report and what we experience to what all this means- Non-IgE food allergy, Protein Intolerance's, FPIES.   SOO much information in one paper, now a chance to MEET this doctor?  To have her consult on Little Man?  Could it be real? 

Another FPIES mom spoke to their son’s doctors about this research MD. They made an appointment for that very week for their son. She shared the information she learned as well and that it might be something for others to look into. We also began to discuss the possibility, the probability of a trip out east again. More information was obtained about the research and the MD and the study’s components and it looks promising, very promising.

Now to get an appointment, an appointment with this very knowledgeable research MD that would also involve being a part of a study she is doing. We make calls and send e-mails with the intentions of our interest for Little Man to obtain an appointment. Other families call as well, other families looking for direction, looking for help on this journey.  We get word that they are interested in Little Man but we are unable to reach the scheduler….the spots are filling up fast and it looks like it may be March or even April before we go.

And then an message comes from a fellow FPIES family. A family we’ve never met. A family we share common bonds with- not only a child with FPIES but a family of 4 children (all similar ages). A family that struggles with the everyday weight and strains of this chronic illness just as we do, that needs this appointment for direction just as much…“Will you take our appointment slot?” is her e-mail message. Not because they don’t want to go, or because their little man doesn’t need it. But because there is a connection among the families…..and offer so generous…of course, I can’t imagine accepting such an offer; and we continue to try and get a hold of the scheduler in New Jersey. We get a hold of the scheduler/coordinator with confirmation that they are interested in Little Man but we get disconnected before the appointment can be made. Another message from this family….”can you make a 10am appointment on Feb.17?” is her message; before I could even reply again she has already made the call to the scheduler and requested that our appointments are swapped.  A family we've never met, kindness from strangers, blessings from angels.  
There simply are no words. No words that I can find to even begin to express my gratitude for this extreme act of kindness, act of thoughtfulness. This family follows our story, and knows our struggles- they share many of those struggles as well, as many other families do. They have sensed my urgency for help as my son is not gaining weight, not tolerating foods, and not moving ahead. They also follow our story enough to know that I am trying to help. Finding answers for my son is my driving force but my passion is in helping others – helping others find their answers, find their baseline. The more I help, the more I learn and the more I learn, the more I share, the more I share, the more I help. We can connect all the dots, we can find answers, we can help one another. We can help our children.  We can help future children.   We can make a difference. 

We are not alone and I am humbled.

Showers of blessings…and my blessings and heartfelt thanks go to the family.

We see Dr.J next Thursday. Stay tuned!!

Sunday, February 6, 2011

"You're gonna miss this"...

..."You're gonna want this back, you're gonna wish these days hadn't gone by so fast...." This used to be one of my favorite songs, a song that could revive me to remind me to stop and smell the roses, to let them be little, to appreciate play and simple things.   That was pre-FPIES.   These days, the song just reminds me of everything we've lost with this diagnosis.   The innocence of the other boys living with a brother with a chronic illness.   Not only a chronic illness that takes up mom's time for caring for their little brother to keep him healthy but one that is so rare and so little is known about that mom's time is spent researching about how to get and keep him healthy.

....."these are some good times, so take a good look around, you may not know it now but you're gonna miss this...." Which part will I miss?   3 growing, hungry boys who can eat anything + 1 curious hungry toddler who can eat nothing = fun times?  Fun.   Fun to look into his eyes as he pulls on my leg while I cook- begging me for food.   I have millet muffins, I have foods that he doesn't want.    Millet cookies that are too dry textured that he will put in his mouth, only to gag on and choke.   Coconut milk that I am not sure yet if it is safe so have to limit how much he takes.     It is very normal for a toddler to want to be in the kitchen while you cook- the smell of the food, the fun of the dishes, time spent with mom....but he can't lick the spoon or even eat what I'm cooking- no matter how badly I want to share with him.  So, I let him explore- the cupboards.  Every drawer and cupboard in his reach has been gone through multiple times  a day by his little hands.  It's the least I can do.....but it isn't enough.   He wants the food we are eating.   He watches me as I dish up plates for his brothers; while he goes to the drawer and get a fork and reaches for a plate....maybe this time, maybe this time mom will dish a plate up for me too.  I do what I can, I give him a plate that look like everyone else.  I put his safe foods on it, he has little cups to drink from (hemp milk or water), he sits at the table with us.....but it almost always ends in frustration.  

We've been doing this dance for a year.   We're not new to the game.   We tried every trick in the book for distracting him, including him, anything, everything.  We get creative with his safe foods- he's had hemp popsicles, hemp ice cream, hemp cereal, hemp butter, millet cereal, millet cookies, millet muffins, millet pancakes, arrowroot pudding, peach dots, peach slices, whole peaches, peach puree.....

He simply wants to eat.    I can't safely feed him.   I assure you, I am not going to miss this.....

Thursday, February 3, 2011

Chronic FPIES

Chronic FPIES can happen from repeated exposure to trace trigger proteins.   I have written before about how Little man had chronic FPIES.   His symptoms were causing him to be a sick little boy but we could not pinpoint what the culprit was.   It was clear he was reacting to something, and yet we could not find it.  

As we explored FPIES as a possible reason for his illness and intolerance's, as a diagnosis to give us direction; I found many articles that described his symptoms but the acute reactions were more severe than what he was experiencing while breastfeeding.  I did not understand this.   I met other moms that had similar experiences....chronic reactions more than acute.    I have also met many mothers who know their babies reacted through breastmilk with trigger symptoms (not many have reacted to shock but it has happened); although the studies are not clear on how/when this happens- they do say that babies can show sensitization through breastmilk and upon introduction of the foods being ingested by the baby, brings on the acute reactions from the chronic exposure to the trace proteins in breast milk.   I know now that Little Man was chronically reacting to corn, rice (dairy and soy before I eliminated them) in my diet after we began those foods for him.    But, his body is very efficient and was coping, while displaying a myriad of chronic symptoms.  Not until we pulled all food, stopped breast feeding, changed to elemental diet for control of allergens - in hopes of healing his gut- and finally began to re-introduce foods, did we see the acute reactions.  First to rice, then sweet potatoes and then corn.    It has been difficult to get him healthy past corn fail, he had already been reacting to corn on a chronic level for so many months.  Introducing corn in it's whole protein form, brought on the severe reaction (we were already seeing acute reactions from the formula itself- Elecare, Neocate, and Neocate Nutra).   His once very resilent body, struggled to pull out of the acute on chronic reactions of corn.  

It is clear there are many cases of chronic FPIES, so little is known about this diagnosis.  Many doctors who are aware of it are only aware of the acute reactions, they are not familiar with the chronic reactions from trace or contamination of trigger proteins.    Chronic FPIES can be very frustrating, and can bring along many compounding medical issues -- while the "silent" damage continues....until the acute phase of the reaction brings the trigger food into the light.  

Last month, a fellow FPIES Mom (thanks Nichole G.!) found this article online: FPIES by Cows milk proteins passed through breast milk.   It is the first article with the chronic and acute on chronic FPIES "language".   I was so pleased with not only the recognition of FPIES through breast milk but also the confirmation that chronic FPIES has been noted by the medical community (even if it is in Italy!).  I sent an e-mail to the author MD, and he even responded with the PDF of his article!  He noted in his e-mail that he would like to see more research on this growing allergy.   I am glad to hear that, I do to.  


We started a coconut trial.   I have had my eye on coconut for months, but I was worried about the fiber and sugar content.   Well, it keeps "calling" me.  Sometimes I get an instinct about a food - but then that could be confused with how badly I want the food to be a pass in his diet.  

Coconut doesn't offer a huge nutritional jump, but it does have it's super-food powers.   Coconut can be classified as a functional food, a functional food that provides nutritional benefits beyond it's nutritional components. For a breakdown of all it's nutritional benefits, click here

So, beyond the fiber, and the healthy fats it provides benefits such as intestinal healing, healthy fat ratio.  It has many historical benefits, some of which are becoming published as the benefits are being explored.   There is some interesting information at this site on coconut research.  The benefits that grab my attention the most of course are: "Kills fungi and yeasts that cause candidiasis, ringworm, athlete's foot, thrush, diaper rash, and other infections", and that it "Improves digestion and absorption of other nutrients including vitamins, minerals, and amino acids".   These two factors alone are enough to want coconut in an FPIES child's diet.   

We are hoping and praying for a coconut "pass" (as we do with all foods but in particular super foods like Coconut).   It will be a great addition to have in his diet, mostly it will be a great addition to his hemp formula that I make for him.  

PS- Hemp is also considered a super food.

Wednesday, February 2, 2011

My little peach.

Thank goodness for safe foods!!!  Peaches are safe.  I hope to get through the rest of the peach "food family" soon (nectarines, apricots, plums...) but for now- we are enjoying the peaches.   Little Man even asks for them by name!   We couldn't resist letting him have it the way he asked for it- whole!  No skin, but eating it whole!

Of course, I have a few dozen pictures just like these!   I am so happy to see him eat.    We are also readdressing millet.  My concern is that it was too much "grain" for him following the vitamin (corn derived ingredients) fail.   That with his acute inflammation - his gut needed a "bland" diet.  We have reintroduced it (again!) and are not seeing any signs of symptoms we were prior.   So, maybe that mystery is solved.   Why this happens is another mystery.