Still waiting....

for the final interpretation of results from Dr.J.   She sent the results right before she went to a national allergy conference in California.    She is back now, do doubt trying to catch back up after being gone a week.   She has been available for quick questions but we have not received the final results.   The results she did send, with some beginning interpretation, do fill in some holes- but I'd rather hear the final wording from her, and also the "what do we DO about it, and how do we FEED this child".  

We've gone back and forth with this probiotic- the benefits outweighed the negatives but just kept us on the revolving door....I tried to add banana for prebiotic- not ready.   I tried to add the bifida strain - seemed to over activate his immune responses.   So, Dr.J suggested trying one that has lactobacillus and bifida strains in one pill- the Kirkman's Pro Bio Gold.   We started that today.   Today went very well.   We will see how the night goes and the next few days, and continue to pray that we have found the probiotic "fit" for him.  

So, we're keeping busy waiting, and surely we'll have results soon??  In the meantime, I am working on our upcoming Benefits!  Stay tuned for more information on that!

If this cold would ever go away....

It's making me nervous....to many memories of last winter when it was cold after cold and so many of his symptoms of reflux, spitting up, clingy, crying, disturbed sleep, decreased appetite, low grade fevers, runny nose, barky/wet coughs were being dismissed to the cold....but I just knew it had to be more.   I didn't know what, but my instincts told me there was something connected to his many intolerance's and these repeated viral illnesses. 

Little man is fairly healthy....well, except this whole FPIES thing.   It is thought that FPIES is an over-reactive immune response; so it does make sense that many FPIES kids are not often sick with a virus as their immune systems are attacking simple food- of course it will attack a virus.  

Big brothers are always so thoughtful, and we do teach them to share- so our 3yr.old thought it would be good to share his cold with his little brother.    But, just when we think we are seeing the tail ends of it- symptoms come flooding back.   We have been trying to do more probiotoc trial (2nd strains) and a banana trial....but with this cold- things are so "muddy"!  So, we suspended the banana, and the bifida probiotic.  

This morning, I sent Dr.J a quick e-mail (hoping for those result interpretations soon!) about these cold symptoms- and my worry surrounding them.   Her reply was very insightful....and I want to share it here because it is comforting that it is something so many moms (in the babycenter community) have also attested too.  Food trials are suspended when a cold presents, food trials are suspended with vaccines, with fevers, any sign of illness or an over active immune response and food trials need to take a back seat....or the picture will be muddy.  

Her response was: "I think that you should wait for several days until his cold symptoms resolve. When you have bad viral syndrome which generally provokes systemic immune reaction, it is expected that body's reactivity to food will get worse. I would continue lactobacillus but wait for a trial of new things". 

She has also encouraged us to switch probiotics, staying with Kirkman's line but switch to the Pro-Bio-Gold

but only after his immune system from this cold calms down....I've ordered it and waiting on it's arrival, as well as the cold to disappear completely.   But, mostly I am waiting for those interpretation of results!  The initial results she gave me were very interesting and some good information but without the reference numbers to the chart, or her full experienced interpretation- we are still missing something and not quite sure how to proceed into next steps.    

So, we wait...patience is the name of the game in FPIES world!

Faith...

As we await more interpretation of results from Dr.J, with words like "genetic variation...some systems causing aberrant responses...overall innate immune responses are a little suppressed...atypical FPIES results....not surprising..." floating around in my head of initial interpretation of the results.  I know these mean complexities are in store....but we already know he is complex.  Putting the terms (and possible additional diagnosis') to what we already know is going on in his body, actually gives me more peace....more resolve.  We know there is more to his FPIES, our GI calls it atypical FPIES, another GI we saw in consult last fall called it "FPIES plus", we know there is more going on- but what is it.  

I came across this story the other day, and wanted to share it....now seems like a good time....life really is what you make it, how you see it.  I continue to view Little Man's chronic illness as our gift, he is our gift so anything that comes with him- I will accept.   

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out".
A blind boy sat on the steps of a building with a hat by his feet. He held up a sign which said: "I am blind, please help." There were only a few coins in the hat.

A man was walking by. He took a few coins from his pocket and dropped them into the hat. He then took the sign, turned it around, and wrote some words. He put the sign back so that everyone who walked by would see the new words.

 Soon the hat began to fill up. A lot more people were giving money to the blind boy. That afternoon the man who had changed the sign came to see how things were. The boy recognized his footsteps and asked, "Were you the one who changed my sign this morning? What did you write?"
The man said, "I only wrote the truth. I said what you said but in a different way." I wrote: "Today is a beautiful day but I cannot see it."
 Be thankful for what you have.. Be creative. Be innovative. Think differently and positively. When life gives you a 100 reasons to cry, show life that you have 1000 reasons to smile. Face your past without regret. Handle your present with confidence. Prepare for the future without fear. Keep the faith and drop the fear. (author unknown)

Standing in a glass box...

The floors of this room- looking out into the vast darkness that our fourteen foot living room window opens up into at 2am- is where I walked, nursed, rocked, walked some more, so many hours with a wide awake, gas and pain filled, often throwing up, baby.   I'm not sure if I can forget the feeling of standing there- looking in the darkness feeling the metaphor it was creating....how I felt like I was standing in a glass box screaming- no one could hear me, and I couldn't escape.  No one knew what was wrong with our little man, and there was nothing I could do to help him. 

March 17, 2010 is when he had his first endoscopy/sigmoidoscopy (and also pH probe).  By the time we got to our GI consult (mid-Feb), we had hope for more definitive tests to tell us what direction to go in, to stop all the crying/gas pains/sleepless nights/food refusal/throwing up.  After all Little Man had fallen from 80th% to 40th% down to the 24th% on the growth chart for weight by the time of our GI consult and, in our eyes, he was spiraling fast. 

Every efforts we had made to control his symptoms failed, and even seemed to be making him worse.  Instead, we were given the recommendation to stop breast feeding immediately, change to Elecare and start a new reflux med (having failed the first one).   These recommendations (unknowing to the doctors, unfortunately unfamiliar with FPIES and the potential triggers in reflux meds and even formula) made him so very sick.  Just 3 doses of the new reflux med and we had a sick little boy who was now refusing to eat altogether.   He ended up being admitted to the hospital the last week of Feb.2010.   There, we got him to begin taking the Elecare, but the vomiting and crying continued.  "Give it time"...3 weeks later, we knew we just had to subject him to the endoscopy, if we had any chance of getting better direction because this road was not working either.   The reflux meds were not working so his continued symptoms were presumed to be from that.  My instincts told me otherwise.  I didn't know why, or what they were telling me- but the blood curtling screams he had while ON the reflux meds were a big clue that his body was not accepting, and probably didn't need, these medications. 

The scope revealed diffuse, non-specific inflammation and lymph nodular hyperplasia.  We received the results from a nurse over the phone.  No doctor needed to speak to us, no follow up was necessary.  That was not ok with me, and I requested a follow up to discuss what this meant- because even after 3weeks of following these recommendations (switch to Elecare, stop all foods)- little man was declining daily, throwing up more daily, and the constipation was more than one infant should ever have to bear.  That follow up appointment left us empty once again...."non specific" inflammation meant...nothing.  Eosinophilic Esophagitis and Celiac Disease had been ruled out by the scopes (other disorders having already been ruled out by labs, stool samples, etc).   We were relieved that it was not one of these, but what was it?  How could no one really know what caused such inflammation in our son's intestines?  No one knew because no one knew/recognized FPIES.   A severe, rare food allergy of the gut. 

That was one year ago.   I am no longer standing alone in a glass box.  The cover has been opened and I am standing on top of it....speaking out for my little man, being his voice every step of the way.   One year ago, doctors did not recognize the chronic condition affecting our infant son; today at least 3more children are being followed by these very same doctors with this very same diagnosis.   Today, doctors not only recognize but treat this diagnosis at this very same clinic where we could not find any answers for our little man.   A lot has changed in a year, and I am grateful.  

Colds, Banana, and Probiotics...oh my!

Well, banana went great the first day.   The night was fairly uneventful (or at least not off course from his usual- up a lot to eat).   The next day, he wasn't as interested in the banana but did manage a few nibbles.  Nibbles are ok when you are trialing- there is a need to take it slowly.  But Sunday came and he was not interested in the banana at all.  Frustrating, disheartening.  Why won't he eat?  He wants to eat.  We're still missing something.   Too much of his safe foods, and he has a belly ache; to little of his formula and he is up all night hungry.   There must be a balance in here somewhere.   A balance where I find him a tiny menu, even if it is a menu I need to rotate through so as to not overwhelm his system and to provide him with lots of textures and taste changes. 

Little man drives me....I keep researching his condition, and all the symptoms surrounding it.  I truly believe to treat a disease, you need to find the root- treating symptoms only gets you running on a wheel...and we've been there.   The results from the bloodwork with Dr.J at the PCRCD are back but we're waiting on her to finish interpreting them.   She sent along a brief interpretation with the results but said the rest has to wait until after her return from the AAAAI conferences. 

So banana isn't moving, how is he doing on the probiotics?   We continue to use Kirkman labs CD Biotic that is the lactobacillus strains, the addition of the bifida strains (Bifida Complex), we were seeing odd symptoms- but they coincided with this current cold so it is difficult to tell.  I stopped it for a few days and he has certainly been less fussy/whiny/clingy.   Dr.J suspects that one of the bifida strains may be a problem and we discussed a possible switch to Pro Bio Gold - which is a mixture of a 4 lactobacillus strains and 1 bifida, and also adds in a new strain (a streptococcous thermophilus).  

My instincts are shouting at me to get some stool tests done.  Stool tests that I've come across a few times, that others have mentioned in different arena's.   These are not medical stool samples that test for malabsorption, blood, and white blood cells but another kind- one used in alternative therapy's.  This Stool Test tests for: "Digestive Function Analysis, Microbiology Analysis, Bacteriology Culture, Fecal Fat Analysis, Yeast Culture".  Little man has had stool studies done, he has also had biopsy's taken to check for small bowel bacterial overgrowth.   So, why do these tests?   They test further than "evidenced based medicine" does.   The argument against their reliability is in the results.    Testing for definitive bacteria activity in the gut is difficult since some of the bacteria that inhabits are guts is not even discovered or named yet, some is not able to live once it hits oxygen (anaerobic), so therefore difficult to quantify on a test.   Also, stools can vary in the pathogens, bacteria from day to day depending on diet, medications, environment, outside stresses, etc.   So, how accurate are they?   Let the body guide you instead.   So, I haven't done them yet.   But Little man is on a steady diet, so his stools shouldn't be dramatically different from day to day at this point (that would change once we get into food trials consistently) and even with the probiotic addition- we are still missing something....something in his gut.   Maybe he already has too many good gut bugs, maybe he has a really resistant "bad" bug, maybe it's not his digestion at all.    I didn't want to spend the money on these tests if we could figure out his 'root' in other ways but my instincts keep telling me it may be time.   My bank account holds me back too of course.   The tests cost ~$300-500!!   But what if?  What if they tell us something we are missing?  They are not definitive tests but they could be another piece, another clue....another really expensive clue.   But time is money, and if it had a clue we are missing that would save us time....and most importantly, his health....then we owe it to him to try....

We've done this with so many other things thus far, our trip to PA, taking him off elemental formula, trialing soy, our trip to NJ, all gambles in their own sense - but all benefits to this really big puzzle. All steps to getting him one step closer to healing and thriving.  

A Chronic Illness...

It is the hope that one day, Little man will be past this complex stages of his illness....maybe even past his illness completely.   His system can mature, it can repair, it can be the beauty of a childhood disease- resiliency.   But how much adverse affects will happen in the meantime?

How much to his system, to his feeding ability, to his speech, to his weight, his growth, his development.  And not even just to him, how much to his brothers, to our family?  As a quote on our United Family Fund pamphlets "When you diagnosis me, you diagnosis my family".  

And, as another mom put it so well...."it may be his illness but the whole family suffers through with him"  We suffer through with him....we don't suffer alongside of him- he has to live through not being able to do the simple act of eating, to live through simple foods causing him pain, to not be able to tell me his pain, to have the scary thing IV's, blood draws, procedures, and vomiting and shock....but we suffer through it with him...when he is begging for food during family meal time, when he hurts and can't communicate other than crying (and crying and crying), when my arms are busy holding him and can't help one of the other boys, when he can't sleep and we stay up with him, when he feels lousy so we accommodate his needs first....we all suffer through with him. 

I grew up with 6 brothers and sisters, we are all pretty healthy....certainly no chronic illnesses.   I know what it is like to grow up in a big family and share in the sacrifices...and love; but I do not know what it feels like to grow up with a brother that takes so much of my mothers time and energy and resources.   I worry everyday how the other boys are coping with it.  One of the things I have learned is, if I am coping, they can cope better.  Kids are like that- they live and learn through example through most of their formidable years.  But days of reacting and my anxiety builds and grows and even my best coping mechanisms are difficult to grasp at.  I have developed many coping strategies over the past year but some days, FPIES still gets the best of me. 

Living with a child with a chronic illness is often a constant daily struggle, the struggle to define the line between FPIES and normal.    The line where I pace myself so I can make allowances for his needs while still meeting the needs of 3 other children.  The line where I don't get upset at FPIES for what would normally be happening and affecting our lives anyway, the everyday struggles of raising 4 children on a limited budget and time.  The line where I allow myself the adaptations, the shortcuts, the changes to our family structure and life because of what FPIES is....because it is what I need to do to get my family, my Little Man, through it.  Where we appreciate and thank God for showing us how to slow down, to accept change and it's outcomes.

"Where there is Faith, there is Love.  Where there is Love, there is Peace. Where there is Peace, there is God.  Where there is God, there is no need". (author unknown) 

Because God has given us a gift in Little Man and embracing his illness and the changes it has brought us is my main coping strategy. 

Banana!

One fruit that Little man did enjoy before we took foods away to search for his baseline, was banana.   He never seemed to have any issues from it, so we've had that on our list of foods we'd like to try when his body is ready. 

Probiotics have been going well, but it is clear he needs a prebiotic.  Prebiotics, as mentioned before are indigestible fibers- fruits, root vegetables, fibers....all can be prebiotics.  Banana can act as a prebiotic.  I will reference one of my favorite websites about nutritional whole foods benefits: WHFoods for more information on prebiotics, nutrients, digestive qualities, latex allergy, potassium benefits, etc of banana.  

Little man's body needs banana, for prebiotic, for nutrients Vit.B6, Vit.C, manganese.  Little man needs a yummy snack.   He ate some last night - proudly saying "mine, mine, mine".  I cooked some in his Merry Muffins, which turned out even better cooked with banana than with peaches!  I think he agreed!  He gobbled one up!   I can't even begin to describe how good it feels to FEED him, to watch him fill his belly, and be so happy about it!

Now if only they will love his body as much as he loves them.....

Why do I worry about something as nourishing as a banana?  Does banana have proteins?  Every living thing has protein structures.   And every protein can induce an FPIES reaction.   Many moms in the support boards even discuss having banana added to the list of common triggers as it has been the culprit to many reactions.   We can't explain the rationale, but I did find an article recently that may provide some insights into that.  Read more on that here (Fruit Protein: Another cause of FPIES).

For now, we continue on with banana.  Little man had his 2nd nibbles of it for lunch today.

Spring...

is here?? Probably not; but we'll grab it while we can!!  The other day, it was nice like it was today (yesterday it rained?!) and Little man could not wait to get outside!! He literally said "who-hoo....yee-haw" and hit the ground running!  There was still a good amount of snow coverage the other day though so he was cautious to walk on the snow but today he got a little more brave about it and was sloshing all over..."feet....brrr....".   And of course, with every spring brings mud....and with 4 boys....well, FPIES and Mudpies....I am brought back full circle to the inspiration for this blog (has it really been a year?)

Today, he played a little better, whined a little less, ate a little better, napped a lot better....the bifida strain seems to be going really well and my instincts to start it seemed to have filled in that hole (just disrupted with that poorly timed virus at the same time his immune system was receiving the new strains for the first time). 

We still didn't get test results from the PCRCD yet.  We are hoping to have them by Friday as Dr.J is going to be out of town next week for the Allergy Conference in California (they will talk about FPIES!).  

Other good news is that we are going to be seeing an Immunologist here at the clinic, and thanks to another FPIES mom who has already visited there- it sounds promising!!  Another doctor here that will help us with our puzzle, and is interested in learning and helping other kids here.   So much progress we've made in a year, sometimes it is good to sit back and remind myself of that. 

Maybe it WAS just a cold....

and not a reaction the newly added strain(s) of bifida probiotics....an very ill timed cold.   

Probiotics have been going SO well, he had the adjustment period where it took ~9days to weed out- some refer to it as the "die off" effect, Dr.J said it was from one of the strains activating the immune system; but however his symptoms were all over the place but never building or persisting and then finally evened out.   We stayed in "evened out zone" for a few days before I started to notice there was a peak with their effectiveness.  Is this because they are only able to reside for short periods of time before leaving his system. Probiotics help the resident gut flora, but do not become residents themselves; but they can "visit" longer to help out more if they are "fed" (bad flora, undigested fibers of fruits and vegetables, inulin= prebiotics).  But Little man has little prebiotics in his diet (there is some fibers in his hemp protein powder) so the probiotics, after having their initial effects with the bad flora, now need more to feed off of??  More to help them?? 

Last Thursday, I worked a shift.  I am officially on extended/extraordinary circumstances FMLA (have great support at my job through this chronic illness!!) but I am working intermittently through it and last Thursday was one of those days.   That also coincided with the National ABC story being published about FPIES/Landon/Nevaya and me contacting ABC news here and unexpectedly getting an interview THAT day!  So, needless to say it was a crazy, busy day.   Little man never responds well to stress, or his routine being disrupted too much (is this the gut-brain connection?) so I attributed his "off" behavior that day to the crazy, busy day with a nap interrupted by the interview we quickly did that day.    But Friday, he remained "off".

Our next step in the plan was to start a bifida strain, as soon as we got him to where we felt he was handling the lactobacillus strains well.   So, my instincts were saying maybe that was what we needed to do next, either that or food!   But we are awaiting the lab results from the PCRCD before deciding what food we will do next so Saturday morning I gave him a sprinkling of the bifida strain mixed with the  lactobacillus strain I already give him.   Five hours later, he woke up from his nap CRABBY and feverish.   Now, my other boys have had bad chest colds last week and my 3yr.old is actively coughing still.   So, it could be just his turn to get this cold?  Or is he reacting to the bifida strains?   This is just all too familiar to when we did foods last year- he would always get sick but on a safe diet, he never gets sick?   Sunday he remained "off" (crabby, clingy, tired, pallor, not eating, bad breath, saying his throat had an "owie"); but by Monday he was looking and acting better (although still disturbed sleep- lots of crying in his sleep).   I took him in to be evaluated for a viral illness with the pediatrician and he found nothing concerning for a virus so we decided that we should restart the bifida strain Tuesday and see how he responds to it.   He got 2 doses yesterday, along with his regular lactobacillus dose; he had no symptoms....and he's starting to eat and sleep better!  

This morning, I wake up with a cold....sore throat, upset stomach......maybe it was just a cold?   Trial and error is the name of the game with this illness.  

Next steps?   We will continue with the bifida strains a few more days to see how his body responds, and then we need to get a prebiotic going.   Maybe banana?

Mom's Helping Mom's...

Families helping families...paying it forward.   The online support of moms sharing information, experiences, knowledge gained remains the best place for ongoing, up to date information on this rare illness.  Maybe one day that will change but for now- it remains in our hands.   The biggest online support group, Babycenter,  is a great resource for everyday information, it is where I received so much of my initial training and ongoing knowledge and support.   My first hand experience with my son gave me my own experiences to share, and I added to the moms there, paying it forward.  I haven't been as active in that group lately, but that's ok because moms continue to pay it forward; new moms that started their journey in the same places we all do- lost, confused, alone, looking for answers, moms who take the information shared and process it and make steps to build on for the next mom coming along, where in turn that mom does the same thing.  It is a wonderful thing to see happening with such a rare, complex, and often isolating diagnosis.   These communities of support are also on Facebook and Kids with Food Allergies (KFA). 

As I learned, and carried forward my experiences to share, and then learned some more; I began to see the need to organize some of this information more (in more places than just our ever-tired mommy heads!) and began to formulate how to put it all together.  I tried to put posts of my research on my blog, started with Allergy Nutrition.  And then, Little man's illness became complex and my time was devoted to caring for him, so this was just a project that got put on the back burner.  And I continued to put my research on my blog, but have not put as many updates on how Little Man is doing, simply.  So, I have continued to work on putting together information as I research it (much of it already displayed here on this blog); but have decided that a new blog will be a good place to organize this information....to pay it forward...to become a resource of information compiled to pass along for a new family, or a vetren family needing clarity on something like Non-IgE food allergies or oral tolerance mechanisms.   This is a very complex diagnosis, I am merely learning alongside the other moms- learning as we go along.   Through searching for answers for my son, researching this illness has made me driven, driven to keep searching for help for my son, and driven to help others along the way with this information- if I can.  

The new blog is here: My FPIES File Cabinet.  This FPIES Mudpies blog will remain active for updates specific to Little Man, his FPIES and our families journey through it (which I think my non-FPIES family and friends will appreciate!).   I will reference my file cabinet, if/when I have research that I have done to share- it may benefit another FPIES family, it may not apply to their journey but the information will be there, where I can reference it when needed as I continue to research as much of this diagnosis I can to turn over every piece I can to solve my Little Man's puzzle. 

Treatment plan goals

This continues my sequence of posts about understanding FPIES: from Allergy Nutrition, to FPIES terms to immune mechanisms, gut allergy mechanisms, to probiotics/gut microflora and gut homeostasis to wrap it all up together in how we can outline treatment plans. 

FPIES protocols do not yet exsit. Doctors are too unfamiliar with the multiple mechanisms for this illness. Allergists treat it under IgE protocols, which primarily work, especially when you think of this Non-IgE allergy as an anaphyalaxis of the gut. GI's treat it under EoE protocols, which are helpful and resourceful- especially in the beginning stages when the treatment is to remove all foods, give the gut rest and find a baseline, and then trial foods. Ideally, FPIES needs to be a multi-disciplinary approach driven protocols that are individualized to the specific needs of the child.

The goal of treatments plans should be to develop oral tolerances and control inflammatory responses, while managing gut dysbiosis to achieve homeostasis.

To understand FPIES, it is helpful to understand where current thinking of the root mechanisms are, which are multi-factorial:

• Genetics- immune responses (via cytokines) driven my genetic markers
• Environmental influences- how the immune system is influenced by the digestive tract (birth environment, breast milk, formula, antibiotics,etc...)
• Gut Micro flora - digestion (GALT) and gut homeostasis can influence the degree and severity of the protein intolerance's (increased intestinal permeability- or also referred to as leaky gut).  
• Other factors still to be determined (more research needed).

Understanding Oral Tolerance (immune responses):  

Food consumed enters the body, begins the immunological process, involving white blood cells (WBC's) called Leukocytes and the chemicals they produce, called Cytokines. When the food causes an immune response, it is an antigen. That antigen activates the lymphocytes. Lymphocytes are the first to recognize and respond to foreign substances in the body. Lymphocytes are B cells or T cells. Tcells (commonly referred to as the gatekeepers of the immune system) assign T helper cells (Th) to release messaging cytokines (Cytokines are were the messaging may be part of the dysfunction in FPIES- where the immune system meets the genetics...more on this in an upcoming posts).

 Thelper cells are divided into 3 main category's for molecule recognition:

 Th1- response when anything foreign enters the body, releases cytokines (messengers) to inflammatory markers, Tumor Necrosis Factor-alpha (TNF-a).  Necrosis= death, inflammation can be a protective measure involving cell death of the invading molecule- but it needs regulating (or you have auto-immune disorder of the body attacking itself); which is where Transforming Growth Factor (TGF-B1) comes in as it is anti-inflammatory cytokine that is a regulator to balance of inflammation in immune responses. There are other cytokines involved, but this is the level at where research has been, more research is needed to study the role of further cytokines, and the impact genetics, environment and gut flora play in this mechanism.   IgG antibodies will be present from this response, although IgG testing remains inconclusive to diagnosis FPIES trigger responses as these antibodies will be raised in any Th1 response (viral, immunization,etc) but may be part of a diagnostic tool in the future as it already is with gluten intolerance and Celiac disease. Th1 is designed to protect the body from virus, pathogens, tumor cells (to attack and rid them in the body); but an immature immune system is susceptible to producing Th1 responses to food proteins as well. Why some childrens' immune systems are immature at a time when they should be matured (breast milk, formula, first foods) is not yet fully understood and may involve genetics, environment factors, or both.

Th2- IgE antibodies are produced in response to antigens. Some FPIES kids can have co-existing IgE (Th2) and Non-IgE (Th1) responses.

Th3 - oral tolerance, the body recognizes food proteins as safe and nourishment to cells and does not initiate an immune response.

Understanding Inflammatory Responses:

Food is broken down into molecules, molecules are picked up by the cells in the gut (via the lymphoids- GALT) where antigenic proteins are presented to T cells (as described above). Food molecules couple with the Tcells and travel through the lymph system to the Thymus gland, where the regulatory (Treg)cells can stop any attack by the process carried out by the Cytokines (messengers). In FPIES, the cytokines involved are thought to be Transforming Growth Factor- beta (TGF-b) and possibly interleukin such as IL-10. TGF-b is an anti-inflammatory mediator (promotes oral tolerance- as stated above, the cytokine responsible for not allowing inflammation, or cell death). So, Treg cells regulate the initial response by sending out correct messengers (cytokines- TGF-b, IL-10, IL-17...).   It is understood that this process is dysfunctional in FPIES, the degree of it's function/dysfunction may be what differientes the chronic vs. classic and and the severe cases of FPIES.   Again, further research is needed to identify the mechanisms involved at this cytokine level and what is influencing the dysfunction.

Understanding Digestion and Gut Microflora:
Intestinal flora forms a natural barrier to pathogens and also work together with the GALT (intestinal immune system within the GI tract made of lymphoid cells), Food allergic response in the gut activated by the immune system (via the GALT), is thought to lead to increased intestinal permeability, which can lead to further intolerance's and dysbiosis. One of the roles of gut micro flora is to help regulate the immune system.  Disturption of microflora disrupts Treg responses (which regulates the cytokine responses- which regulates inflammation or anti-inflammatory mediators).   When the antigenic presenting dendritic cell (where micro flora have their role) activates the lymphocytes, it leaves the mucousa via the lymph and enters the blood stream via the thoracic duct. The activated lymphocytes then travel back to the gut and can colonize in the same mucousa or other mucousal sites along the GI tract. This is where the Tmemory cells are then stored and activated upon re-exposure to trigger (antigen) proteins (and likely why the re-exposure can be a more intense response because of the recognition from previous activated lymphocytes.  Probiotics can help manage the gut homeostasis and further reduce the mechanism of allergy responses and restore the natural barrier. 

Gut Homeostasis

The functioning of the gut is important to our overall health.  I've been doing a few posts on this: Nutrigenomics, Probiotics, GI immune system. 

Indeed, we now know that intestinal flora plays an important role in health: stimulating the immune system, protecting the host from invading bacteria and viruses, aiding digestion and assimilation of food. Yet, the importance of these bacteria in the gastro-intestinal “GI” tract has been neglected for a long time, while the focus was merely placed on enteric pathogens and other factors leading to gastrointestinal "disorders".Custom Probiotics

Gut microflora is specific to each individual, established at birth- resident flora does not change substantially from birth.   However, many things in life can change the density,numbers/concentration, and ratio of good to bad microflora.  These things include: diet, antibiotics, illness, stress, infection, the list goes on but these are the main effectors.  To achieve homeostasis, there needs to be a balance of good gut flora to bad. "Lactobacilli and Bifidobacteria, should predominate, presenting a barrier to invading organisms. Around 85% of the intestinal microflora in a healthy person should be good bacteria and 15% bad bacteria. The greater the imbalance, the greater the symptoms" Custom probiotics

You'll notice my above links, a fellow FPIES mom shared the link in her search for probiotics for her child.   I typically don't quote websites that are also selling something and proceed with caution with their information (as I just need to re-research it to be sure it is medically sound information) but the above information is good information from their site, which I found easy to read through (although they are selling something and although it looks like a promising probiotic, as always check with the manufacturer for safe ingredients first!).   The reason I have bookmarked their site is because they have a GREAT illustration of the intestines and it's tie to the immune system.  So, if you'd like a look at that- visit this site and scroll down the page a few paragraphs.    

It shows the villi and crypt of the intestines.  The villi and crypt can be damaged in severe/chronic FPIES inflammation, therefore causing further cascading problems of illness from increased intestinal permeability (leaky gut) due to the inflammation opening "holes" in the intestine, thereby causing further damage, deficiencies and mostly allergies/intolerance's as proteins "leak" into the blood stream (via the lymph).   Villi damage can also lead to nutritional deficiencies and weight loss as this is where nutrients are picked up from the broken down food molecules. 

Intestinal flora forms a natural barrier to pathogens and also work together with the GALT (intestinal immune system within the GI tract made of lymphoid cells), comprised of Peyer's Patches (which facilitate the beginning of the immune response in the GI tract), Paneth cells (control microbes) and dendritic cells (micro flora communication).   When the antigenic presenting dendritic cell (where micro flora have their role) activates the lymphocytes,  it leaves the mucousa via the lymph and enters the blood stream via the thoracic duct.  The activated lymphocytes then travel back to the gut and can colonize in the same mucousa or other mucousal sites along the GI tract.    This is where the Tmemory cells are then stored and activated upon re-exposure to trigger (antigen) proteins (and likely why the re-exposure can be a more intense response because of the recognition from previous activated lymphocytes. 

Probiotics can help manage that balance once it has been established (past infancy).   Probiotics have antimicrobial effects (pathogens, toxins), maintain intestinal epithelium (barrier), and regulate the immune system via the GALT (inflammatory responses to allergens and other inflammatory substances). 

It is clear the balance (homeostasis) of micro flora in the gastrointestinal tract is important to immune responses.

Gut Micro flora and The Immune System

One of the roles of gut micro flora is to help regulate the immune system.   I've done a few posts on probiotics and the pros of probiotics.  But probiotics aren't residential gut flora- they are visitors to help that flora flourish, and even heal a damaged or immature gastrointestinal system. 

We are most familiar with probiotics being responsible for changing the composition (numbers and density) of the resident microflora and thereby restore gut damage but another critical role is in regulation of the immune system. 

"As such, your gastrointestinal tract is lined with its own set of immune cells to help prevent these harmful substances from gaining entry to your body. These immune cells are called the gut-associated lymphoid tissue (GALT). The GALT is the largest mass of immune tissue (lymphoid tissue) in the human body and as such is an important element of the body's immune system. You may be familiar with other lymphoid tissues such as the tonsils and spleen. The tonsils are also located in an area where you are commonly exposed to harmful substances (the throat)."- Allison Tannis, Probiotic Rescue: How You can use Probiotics to Fight Cholesterol, Cancer, Superbugs, Digestive Complaints and More.

Multiple studies have shown Lactobacillus strains promote Th3 (oral tolerance) immune responses.
This article shows that "overall pieces of evidence are beginning to accumulate that support a model whereby disruption of the micobiota also disrupts oral tolerance, potentially by interfering with the dendritic cells (DC) that promote allergen specific regulatory Tcell responses".

The mucosal barrier function of the gut depends on the establishment of of the microflora (at birth). "The immature gut barrier may lead to aberrant antigen transfer and immune responses, thus explaining increased vulnerability to breakdown of oral tolerance....In particular, intestinal colonization acts as an important antigenic stimulus for the maturation of the gut-associated lymphoid tissue. The demonstration that the gut microflora are an important constituent of the intestine's nonimmunologic and immunologic barrier has brought about the concept of probiotic therapy: therapeutic application of consumption of cultures of potentially beneficial bacteria.....Moreover, the intestinal microflora contribute to the processing of food antigens in the gut, and probiotics have been shown to modify the structure of potentially harmful antigens and reduce their immunogenicity in vitro and in vivo, together with a potential to dampen hypersensitivity reactions . These effects are seen as a significant improvement in the clinical course of atopic dermatitis (eczema) in infants given probiotic-supplemented elimination diet, and in parallel, markers of intestinal and systemic allergic inflammation decreased significantly."Functional Foods and Probiotics.

As I read through several articles in my research on the role of probiotics and established micro flora, I come across language that suggests that with impaired immunity regulations, the body isn't just attacking food proteins but the established micro flora as well.   This article on Early Nutrition is an insightful read for this concept. 

Within much of the research is reminders that there is so much more to be researched in the field of microbiota and probiotic therapy (effects and limitations of).   Initial research has shown addition of beneficial strains of lactobacillus and bifida bacteria to be a helpful component in the treatment of inflammatory disorders.

What will the blood tests show?

"We tested for Cytokine production in responses to represesenative food proteins (soy, milk and wheat) as well as candida antigen when peripheral blood mononuclear cells are incubated for 4days with these antigens - 7 cytokines are checked in each set up.  We also tested for responses to cytokine production against a panel of TLR agonists - simulating responses to microbial product, we are testing responses against a dectin 1 agonist; we will check production of a panel of cytokines in each set up". 

What? What did she just say? Cytokine, agonist, dectin 1??  Yes, it all makes sense and yes it is all complex.  Immunology is complex, research is even more complex.  I've been breaking it down, piece by piece-her research that all leads to this.   There is hope for puzzle pieces, some that she has already theorized on. 

We received some initial pieces from PCRCD yesterday, the documentation of the consult.  Her impression:
 #1. FPIES - a severe condition, not tolerating elemental formula (tried Nutramagin AA, Elecare, and Neocate) which may be partly attributed to his reactivity to corn derived products.   Appears to be reacting to carbohydrate components as well but reaction is non IgE mediated.  Multiple endoscopic examinations ruled out Celiac Disease, EoE, or IBD.  It appears that he has impaired oral tolerance induced which may be partly associated with genetic components as well as intramuscular injection antibiotics during his newborn period. 
#2. FTT- poor weight gain.  He may require NG or G tube feedings but given his past medical history, a concern is his potential reactivity to tubings used for feedings.
#3. Anaphylaxis like reactions- documented with foods such as soy.  However, this is non-IgE mediated, suspect cytokine storm. 
#4. Adverse reactions to multiple medications.

Plan:
For FPIES and Dysbiosis:
-Cytokine profiles in responses to food proteins and candida as well as checking his responses to a panel of TLR agonists and heat killed candida.
-Start probiotic, starting from very small dose....

For multiple severe adverse reactions:
-unlikely to be IgE mediated given time-course
-This may be more likely to be associated with rapid rise of inflammatory cytokines as reported in some patients.   Given his time-course of reactivity to sugar molecules, a role of NKT cells may need to be considered. 

Yes, a lot to digest but I've been studying for months- and preparing for weeks on Dr.J's specific research.  The posts I began with FPIES terms is to help understand this (as I know some of you are also awaiting results from Dr.J, or awaiting appointments).  I will continue with those posts tomorrow (having technical difficulties with my Word program I saved them in!  AND we will be getting the lab results this week.   So, stay tuned!!

Immunological Basis of GI Food Allergy

My review of the article: The Immunological Basis for Gastrointestinal Food Allergy


Summary: Food Allergies are now being recognized as being a treatable component of the atopic march.

Food allergies are common in children. Significant impact on quality of life (more research is needed because of this increasing). Recently there has been a shift in the recommendations after realization that delayed food exposures may be harmful in immune sensitization. “Instead strategies aimed at early introduction of foods to induce oral tolerance are now being re-evaluated…very encouraging results are being obtained in desensitizing allergic children via oral tolerance.” (TH3 vs. Th1 responses). The goal is not to induce complete tolerance in all cases but to raise thresholds, thus minimizing reactions to trace proteins (increasing quality of life by better control of allergy).

Research has shown that all infants have T cell responses to food antigens . In a small subset of children, there is an inappropriate immune response which results to sensitization of food antigens. “The critical question is not necessarily exposure to food antigens but the nature and type of immune response which an individual generates to these antigens.”… not the type, timing or dose of exposure but these variables are imposed on the individual, and complex immune system- in a time when the immune system is still developing (infancy).

Progress in GI food allergy remains slow, given all the complexities. Food allergy in children remains treatable when properly diagnosed and after a period of avoidance, oral tolerance is developed. The studies have increasing emphasis on immunology.

The paper goes on to discuss current research on the timing (early exposures or delayed introductions of food proteins into the infants diet) is affecting the rise in food allergy. It sites this article article for references as an excellent read on the growing/ongoing subject of research into infant food allergy (delayed introductions past 4-6mo. May have negative effects vs. previously thought of protective effects on oral tolerance.

The article goes on to discuss Regulatory T Cells and Food Allergy. “it is clear that there exists a population of CD4+, CD25+ T cells in blood whose primary function is to regulate immune responses”. Studies have shown that infants who develop food allergies have lower Treg cells function than non-allergic infants…”suggesting that a defect in Tregs may predispose to food allergy”. More research is needed in this area.

It covers a little in this article on desensitization in food allergy- by repeated systemic treatment with allergen. It is being recognized as treatment for allergies although specific mechanisms remain unclear it is thought to be “induction of Treg cells or blocking anti-bodies, or both. Desensitization is sublingual immunotherapy (SLIT)- small amount of allergen is placed under the tongue, and oral immunotherapy (OIT) which is feeding small amounts of the allergen". It does go onto to describe a more recent approach of introducing allergens via extensively heated proteins (with IgE antibody allergy) and studies have confirmed this with milk allergic children tolerating extensively heated milk. It goes onto to clarify that the goal of this immunotherapy isn’t only to allow the food to be completely tolerated (non-allergenic) but to simply raise the threshold of tolerance in anaphylaxis response allergy (thereby increasing quality of life).

The article also sites the Finnesh Allergy Programme 2008-2018 as a “highly ambitious project to reduce the burden of allergies” Stating that the background is based on immunological responses- focused on continuous exposure to antigens and strengthening and restoring immune tolerance mechanisms.

The article wraps up with a mention of delayed onset food allergies (and how slow research is in understanding it), but points out that IgE allergy are T-cell dependant as well so that there can be crossovers in strategies.

Immune System and Respone...General overview

Immune Response happens when white blood cells present foreign materials to the B or T cells. 

B cells= antibody-mediated immunity (IgE)

T cells = direct cellular processes to protect the body, but does not produce antibodies.

T cells carry T cell receptors that recognize specific antigens; and there are 3 main types of T cells:
Th1=regulation of defenses against bacteria, virusus, fungi, parasites.
Th2=promotes antibody production
Th3=responsible for immune regulation of T1/T2, which gives us oral tolerance. 

T cells can cause immune dysfunction in two ways.  One is there the Th2 is dysregulated and this results in overprodcution of antibodies which cause typical allergy and allergy associated diseases (IgE, eczema, allergy induced asthma...).    The second is when the Th1 is overactive and this leads to auto-immune diseases- the body attacking itself instead of bacterian, viruses, fungi and parasites (rheumoatoid arthritis, multiple sclerosis, Crohns, psorasis...)

FPIES is thought to be a Th1 response, not over active but over RE-active.  The Th1 isn't activated to attack unless it recognizes foreign antigens (food triggers).   There are some FPIES that remain complex, and the question remains is if this over-reactive response doesn't just become over active in general turning the FPIES into an auto-immune and chronic condition that is more difficult to control. 

Gut flora helps to regulate immune system responses (continued in another post: )

Dippin Dots!

Hemp milk, peaches, the possibilities are endless....well, ok they aren't endless but it does make for a fun and easy treat for Little man!!   All thanks to his Awesome Aunty A!!!  Thanks for thinking of us A!



My sister, A., has helped us along this journey more times than I can count, in more ways than I can count.  This week, it was in this thoughtful gift of a Dippin Dot maker.  It only requires me to put a liquid in the little dispenser, no additions to make him some "ice cream"!! In DOTS- his favorite food shape! :)

Dippin dots for dinner, dippin dots for breakfast- he even asks for them!  Love you A.!!!

Although you may not hear it as often as you should, you're appreciated so much.  

I wish I had a new way to say thank you....

a way that would really express

how much your kindness has meant to me.

You have a way of touching lives...

of making days

a little brighter,

hearts a little happier,

and problems seem

a whole lot smaller.

You're a wonderful gift to me,

and my life is better

because you're in it.

  ---Linda Lee Elrod

FPIES Terms

This is the beginning of a few posts that I am attempting to put together to break down the FPIES processes, from how I see it through research on FPIES studies, Non-IgE food allergies as well as digestion and immune system responses. 

My disclaimer that this is FPIES specific, there are dozens (ok hundreds, millions?) of processes that can happen in the immune system and GI that may share mediators with FPIES; for example (and for simplicity?), I will not be going into everything a Tcell is responsible for- but how it (theortically) affects FPIES kids.

Terms & Definitions:

Antigen: Foreign substance that will produce an immune response.

Oral Tolerance: Specific supression and balance of the immune system towards an antigen.

Lymph nodes: Act as traps, or filters, for the immune system.  Antigens are presented via the lypmph nodes.

Peripheral blood mononuclear cells: Lympocyte, monocyte, macrophage. Critical piece of the immune system to fight invaders.  Lymphoctes are: T cells, B Cells and NK cells.

T-cell Lymphocytes: White Blood Cell's called the control cells (gatekeepers), classified according to markers on their surface (T-cell receptors- TCR). (T stands for Thymus, which is where they are regulated).  Each Tcell has a specific receptor for each antigen.

T memory: cells to store the memory of the molecule the body classified as an antigen. Numbers quickly expand upon reintroduction of antigen.


T Regulatory cells (Treg)- Tcell lymphocytes involved in preventing intestinal inflammation, and regulating oral tolerance. Receptors can be either alpha/beta or gamma/delta, each receptor is responsible for recognizing foreign antigens and designating either induction or suppression.

T cells are classifed into 2 subsets:
CD8- (suppressor) monitor for antigens in the body to destroy.
CD4- (helper) responsible for cell and antibody mediated immune responses.
Subset of CD4 are T-helper (Th) cells:
1.Th1- cell mediated responses,  regulation of defenses against bacteria, virusus, fungi, parasites. This process involves dendritic cells presenting the antigen to the Tcell and the T cell releasing cytokines which leads to the inflammation from recruited leukocytes to the site. 


2. Th2 - Involves B-cells, and promotes antibody production (IgE allergy).


3. Th3=responsible for immune regulation of Th1/Th2, which gives us oral tolerance.

4.Th17- more recently discovered found in the lining of the GI tract and skin, responsible for clearing out fungi and bacteria (gut flora) with inflammation.

Each Th cells produces different cytokines involved in the immune responses. 

Cytokines: Inflammatory mediators, responsible for the interaction and communication between cells that trigger inflammation and respond to infections.  These include  interleukins, lymphokines, tumor necrosis factor and the interferons.

Tumor Necrosis Factor (TNF): pro-inflammatory cytokine that induces death (necrosis) through the inflammatory process (controls responses by inflammation). Inflammation can be a protective measure- but it needs regulating (or you have auto-immune disorder of the body attacking itself).

Transforming Growth Factor (TGF-B1): Anti-inflammatory cytokine, a regulator of homeostasis of inflammation in immune responses.

Gut Associated Lymphoid Tissue (GALT): Digestive tract is equipped with it's own unique immune system. It consists of: tonsils, adenoids, Peyer's patches, lymphoid tissues, lamina propria. Everything taken in via the oral route is processed here for either rejection or tolerance of the immune system.

Peyer’s Patches: facilitate the generation of an immune response within the mucosa.

Lamina propria: connective tissue coating on intestinal lining (between surface cells and membranes of intestinal lining), part of the mucous membranes of the GI tract.

Toll-like receptor (TLR): receptors that recognize molecules from microbes that come in through skin and intestine and activate immune responses.

Dectin 1 agonist: works with Toll-like receptors in recognizing microbes.

Non-IgE food allergy (NFA): cell mediated response to food antigens.  

Stay tuned for further posts and some news about restructuring my blog!!

Local Boy Has Rare Food Allergy Disease....

is what the title to this KAAL News Story is.

In efforts to raise awareness, Fallon Schultz has been contacting, and getting interviews with, her local news programs.   Last week, her son was featured in this article.   This morning, he was featured on ABC national news, with a TV interview set to air next week (Tuesday).    I've been contemplating how/when I will contact local news here as well, and this was just the ticket!

Another FPIES mom (thanks Kendall) knew I would be excited about his story and e-mailed it to me this morning.    We both thought, why not contact local papers and news?  I looked up the 3 main ones here in our city, and contacted them through their websites- just sending them a quick e-mail that this story is being highlighted nationally, would they like the opportunity to tell it locally as well?   I barely sent the message and got a reply back- the reporter wanted the story right away.  I had the chance to take a break from work to run home to do the quick interview.  My goal is to raise awareness to help other families and I feel they did our story justice and I am grateful they responded to the call.

Prebiotics...food for gut flora

Little man's diet does not have a good supply of prebiotic fibers. Prebiotics are the indigestible fibers that help the gut flora not only get past the stomach acid but also for something to nourish off of once deep into the intestines. If you get your daily dose of fiber, you are getting prebiotics for your gut flora. Inulin is another popular prebiotic- put in powdered probiotics, enzymes, even baby formula. The most popular form of inulin seems to be chicory root, although it can be found in many other root plants.


Inulin can be rough on the digestive system if taken in large quantities. Little man has clearly always had a sensitive stomach and previous supplements tried with inulin and FOS give him gas and cramps. He also has a secondary dissharchadise deficiency; he lacks the enzyme to break down saccarides (starches/sugars) difficult for him to process. Even his arrowroot starch has to be carefully cooked down to syrup (thereby breaking it down before his body has to) and in smaller quantities than his body could otherwise handle without this enzyme deficiency.

The Kirkman’s probiotic he is on does not have inulin, it has indigestible components from pine tree- is what I am told from the company. He is tolerating it well, but without the inulin and an absence of good indigestible fiber in his diet- the bugs have less to feed off of to flourish....which I believe may be one of the reasons why he is "peaking" on the probiotic.

Increasing the morning dose (and only giving once/day) did not fare well yesterday. He was "off" all day. He is better already today with his dose of 1/3 sprinkling capsule with a small tsp of hemp milk. He does well with two doses a day, so I'm trying to decide if he needs 3 doses. He tolerates it well mixed in with his hemp milk, so may just start adding it to his formula but it is difficult to control the dose that way if he does not drink the entire bottle.

I still am looking to find the connection as to why it affects his behavior/mood/sleep so well. Dr.J has done much research on the gut-brain connection but admits it is not well accepted by neurologists (that a food allergy can affect behavior/mood/sleep. I have seen it happen first hand, not only in my own FPIES child but my own other children as well as many cases of reports of the gluten/casein/soy free diet for ASD kids. My thinking is if the neurologists aren't seeing it, they aren't looking hard enough. It is true that not all ASD are affected by food allergies or respond to the diet, but it is also clear (by teachers and parent accounts and research) that some do. Dr.J suspects those FPIES kids that also experience behavioral changes with food reactions have a genetic component shared by those affected by food allergy in the ASD community. I'm not a researcher or an MD, but as a parent- I would have to agree. I look forward to the day when those pieces become more clear....not only for our FPIES community but for ASD community as well. For now, Dr.J did give me a tool to help assess his pain, through his behaviors- an ABC scoring sheet (she also uses this in her research study)...it was alarming to calculate how much pain he could be in based on his non-verbal cues of his behaviors/mood/sleep.

I am interested, and look forward to; learning more about food allergy and brain connection (coined the brain-gut connection).

FPIES and IBD

Probiotics are microbes, taken in that reside along the established micro flora of the gut.   Micro flora (hundreds of gut microbes) is established at birth.  It changes very little over the course of your lifetime, it is unique to you.   Antibiotics, allergies, prebiotics and probiotics all will affect this established micro flora (it's numbers and strength so to speak) while passing through, but the base (established at birth) remains the same.   Little man's micro flora was already disrupted before he got a chance to fully establish it.   He had antibiotics at birth due to his quick delivery as a precautionary against my GBS+ status.  That coupled with my IBS (and poor gut micro flora), his genetics with atopic (allergic) background, made him susceptible to increased intestinal permeability....only I didn't know how much the risk was at the time....and we stumbled around in the dark for months.  

Once he started reacting, and he would go from constipation to diarrhea and back again, and he had so-so much trapped gas....my instincts told me he needed a probiotic.   I began taking larger doses for myself, so it would be passed through my milk to him; I also took enzymes.   I felt like these helped, we noticed differences, they bought us time anyway.   Until we trialed the formula, and started to introduce foods....

Once we found out he had "non specific" intestinal inflammation on his first scope at 8mo.old, my instinct was to get him on a probiotic and a good source of Omega 3 fatty acids.  He failed both, even though I thought I was getting "clean" and "hypoallergenic" sources.   Looking back with FPIES eyes, I now know better (added ingredients and cultured on dairy, etc).  But then, I have been too nervous for setbacks to trial any again.   I didn't want to set him back trialing a probiotic when what he needed was food.  

Dr.J has helped us see that we did in fact need to take that step back....correcting the gut flora first- the body will continue to attack itself basically if we don't first re-align it's inhabitants (gut flora).  Dr.J has studied the effects of probiotics on kids with non-IgE food allergies and studied probiotics in general.  She was excited to tell me that just in recent years has there been more information about the specific effects of specific strains of probiotics- that each strain has their role.  More research is needed to fully understand but having more to work gives her a base to go from.   With Little Man reacting to so many things, she wanted us to start very slowly, low doses with low strains.  We started with a double lactobacillus strain in a low "sprinkling" dose.   And we got to see why starting low was essential as he showed signs of adjusting or die-off for the first week; but then it all just "evened-out" and he has been doing really well with them....he even likes the taste!!

Once he evened out with tolerating the dose, I started to notice he was maybe "peaking" on that morning dose- he was doing really, really well all day but was starting to melt down in the evenings and had disturbed sleep at night (but then was napping more during the day)....it seemed if he was within the "window" of the probiotic, his body was relaxed- he could sleep and eat, and play "normally", but that once that wore off- he reverted back to how he has been for months-- which isn't overtly off baseline but not as good as he is when "covered" by the probiotic.   So, I began to wonder if I should start a 2x/day dose- a morning and an evening.   I started this on Sunday and he did beautifully with it and continues to show signs of improvement (able to hold his baseline all day); but if we get behind or miss a dose- we start to see whiny behavior, pale look with bags, and more flat affect (nothing extreme but a noticeable difference).  On the probiotic, he is running, playing, giggling, learning new words, eating full bottles, sleeping well (falling asleep on his own), pink cheeks and vibrant color eyes.   There is a difference, and I am a little amazed at how much this small change can be making such a big impact on his demeanor.   And it makes me curious as to how and why....

I sent Dr.J an e-mail to inquire her insights on it.   She relays how much it is individualized and how we can learn a lot from the bodies response to a probiotic.   She agrees to try twice daily doses, or try increasing his once daily dose- or both...experiment to see where he responds best (now that we know what his responses to the probiotic looks like).  She also relayed that his body showing good response to the bigger strains could show that he has inflammation throughout- small and large intestines (from poor gut flora- an underlying inflammation from the poor numbers of good gut flora- essentially his gut is attacking itself, or not able to properly restore and rebuild itself.  It makes a lot of sense and I can see what she means about being able to tell what is going on in the gut by the effects of a probiotic.  She relates that it is similar to what happens with people with IBD (whose body can attack itself regardless of what foods are eaten).  

Each day I learn more, we take a step, we watch symptoms and process through what is happening and move to the next step.   Wait, don't look now but are we taking steps forward???  

The next days will be spent working out his dosage and timing of dose with the current lactobaccillus strain.  The next step is to add a bifidia strain, and watch and learn how his body responds to that.   We also will be finding out his tests results within the next 2 weeks.  I will be posting more about what those results will be showing in an upcoming post, as well as posting his results when we find them out!  Stay tuned!

Building blocks...

An creatively brilliant FPIES mom created this inspiring FPIES logo for our United Family Fund. It is a fitting logo and symbolizes so much.   And I am thankful for Amanda for creating it and to Fallon for choosing it for the Fund logo.  

To me, it is a reminder of the building blocks we are learning about our kids and this rare illness....learning together, building from one other's experiences- with food trials, with diagnostic tests, with research studies, with doctors- knowing and unknowing, with food allergies- typical and atypical.   So many variables to learn from so many families.  Too many families having to experience the same things we have experienced.  And all surrounding such a simple thing....feeding our children.

It also symbolizes us: the families- building on each other.  Every one of us brings something unique to the table- whether it is a recipe shared, an experience with elimination diets and breastfeeding or formula tolerances and food trials.  Or, if it is in fund raising for the United Family Fund for further research, or in sharing knowledge gained with other moms just beginning this journey, or exploring new paths not yet traveled on.   We are a community of building blocks.  No one person can do it all, but we all can build off each other- each bringing our building blocks forward- not placing them by themselves but linking together for the cause....for our kids....

Maybe we bring our block and leave it, placing it there for others to build on, but unable to stay with it- because we need to care for our sick child, or the welfare of our other children, or simply just enjoy a much sought after baseline with our child....with our family.    But that block placed will not be wasted, it will be built upon- added to.   And then when we come back to the blocks, we add another.  Today you care for your sick child, while another family raises money for the fund.  Tomorrow you raise money for the fund while another family explores a new path and shares their experiences.  Next week you explore new research while another family takes time with their family.  Amidst all of this, life goes on, and every few days a new family is joining the community.   We need to continue building on what is known, we need to further the research. We are stronger together.

I, personally, would not be where I am today without the community I have found and formed online with other moms.  It is the other moms I credit for my knowledge gained, for help with our puzzle pieces, for the drive to push on and on.   I thank all of you who have helped me understand and cope with this illness.

Probiotic Day 9

Actually today is probiotic day 13 but it was on day 9 that things turned around.   Was it die off?  Adjustment?  I don't know; but every symptom went away and he has been doing beautifully with it (he even voluntarily takes it!).   I suspect it will be one of those things we won't really know until more pieces are put together- more steps are taken forward (hopefully forward!).   I am always looking ahead to next steps and Dr.J had discussed that if/when he tolerates the first strain(s), we could add a bifida strain.  I have one ready but not sure when we will add it.   For now, I will play around with the dosing (should ideally get it 2-3x/day so we started that today).   And, we still attempt to try broth.    The lamb was a no-go for now, so we moved on to the beef.   The beef cooked up much better but he did not like the initial tastes of it.    I still have yet to figure out how to trial a food he won't put in his mouth.... As always, we will get creative and hope and pray for the best!  

We will also be getting another weight check later this week, and hopeful he is continuing to gain weight as he continues to eat ~1300-1400calories/day (24hrs/day)!

My FPIES Toolbox...

This FPIES puzzle is so big, I rely on my toolbox to help me with the pieces.   Every once in awhile, a piece will come loose, or fall out, or need gluing - or a good hammering, to stay in place. 

I started my toolbox very empty, I began to fill it with: nuts and bolts (ie FPIES studies). Then came the nails that secures me in place with all the shared knowledge (ie FPIES families).  Then a few hammer's of varying sizes (ie to hammer in a point)- did you know kids can react to the feed that an animal eats? And that they can react to the proteins in mothers breastmilk? Then a few other tools to fill in the gaps:  Food Family Lists and Janice Vickerstaff guide to food introductions, as well as resources such as PIC and books like GAPS; all can fill in some holes here and there- used as tools to guide, taking bits and pieces of knowledge to apply to our puzzle.  Some glue has come along and proven to be quite effective already- ever use gorilla glue? (ie Probiotics).  Some screws were needed (diagnostic tests), not to test for FPIES but to rule out other related medical conditions (such as Eosinophilic Disorders and Celiac Disease.   A good variety of screwdrivers is very helpful to tighten up the seams (ie Allergist, GI, Dietitian, Pediatrician).  Every good household toolbox needs a flashlight, ours has become Dr.Jyonouchi's research and her published articles on Non-IgE food allergy are starting to shed a good light on my thought process on individualization and the Immune and Gut involvement for the FPIES puzzle.  A good toolbox to keep all of this in is essential, FPIES kids don't fit in any square box but the corners of Functional Medicine makes a good bag to carry all of this in.   

We need this toolbox because each of our children are different, the FPIES mechanisms may be the same base but how we carried them, their birth experience and exposures, breast fed or formula fed, first food exposures, vaccines, environmental toxins....all change the FPIES puzzle enough for each child that without a toolbox full of useful tools, we will be lost.  

I continue to look for new tools daily to fill my toolbox(bag) with.  The research at FPIES United Family Fund will be one my next stops!

We have weight gain!!

With no assaults to his system, on a safe diet, and now with probiotic introduction....in the past 2 weeks, we have a 1# weight gain!!  A FULL and ENTIRE pound!!  AND he's gaining in inches in this time too!  I suspected as much as I've been putting away a lot of outfits in the "outgrown" bin and pulling out the 2T cloths! 

I have his formula to ~22calories/ounce, and he had been averaging ~1100cal/day; which is enough for weight maintenance but not gains for this active toddler.   Since starting the probiotic, he averages ~1300-1400cal/day! 

We are ecstatic.  This is great news, on so many levels- to see him growing....to go from less then 10th% to in the 20th%tiles is so very rewarding! I watch his growth chart closely....it is a big gauge for his nutrition status (for the mommy in me as much as the dietetic technician in me!).   It also confirms how, if his gut is recovered from reactions- he can, and does, gain weight.   A good sign.