More Probiotics?

Little Man is tolerating the Kirkman labs CD-Biotic, it is the lactobacillus rhamnosus, lactobacillus plantarum, and saccharomyces boulardi.  But something isn't complete with this probiotic.   We are shooting in the dark-does he need additional strains? Every time we try to add the a bifida strain, we have issues.   Switching to ProBioGod caused FPIES reaction building like symptoms, anda  switch to a new probiotic with multi strains brought on a cough, quickly followed by fevers.   The fevers may have been exacerbated by some coconut I was giving him.   We have trialed coconut in the past, the trial got interrupted and we haven't made it fully back to it yet but have started a few times with no adverse reactions.   The only problem we seem to run into is that he will eat it with gusto the first day, and then not want it the next.  So, like with a growing list of foods- we don't really know if it is truly "safe", because of his delayed responses- we need to trial a food for 10-14days before calling it safe.  

Coconut is a functional food.  It is a prebiotic- food for probiotics.  Coconut is a natural anti-fungal.   Dr.Jyonouchi has said an anti-fungal (Nystation or Diflucan) helps some Protein Intolerant children when starting a probiotic.   How does it help?  I have not had time to fully research yet as I do like to know the what's and why's of things- especially since we are getting conflicting recommendations from his doctors.   Our trusted GI doctor is worried about doing Nystatin prophylactically with concerns that he would not tolerate it.  A valid concern.   Dr.Jyonouchi often prescribes it prophylactically.   With e-mail discussions with her, it sounds like it helps control the fungals (the "bad" gut bacteria) while the Probiotic (strengthening the "good" gut bacteria) does it's job.  It helps even the playing field in correcting the dysbiosis.    I have also heard of many kids having success with doctors who also prescribe an antibiotic during this "reseting" time.   An antibiotic can kill off some "bad" gut bugs, but it is more detrimental to "good" gut bugs.   But with the right combination of therapy, in particular if you know the gut flora of the child, it can help with the dysbiosis. 

We are worried he will react to Nystatin.  He is having problems with the probiotic- it plateau's throughout the day- when given, it has an almost immediate effect but we are seeing it wear off 4-6hrs. later.   I did try and give it to him 3x/day but it seemed like too much?  So, it seems, what he needs is something to help it- something for it to feed off of so it can reside a little longer and have "strength" to do it's job inside his intestines, alongside the resident gut flora.   I decide to go back to coconut.  He needs something.  

He's been fussy that morning, so he sits on the counter while I made some coconut milk, with intentions to put a little in a few of his bottles (maybe the one he takes around the probiotic dose?).   He is asking for some of the coconut manna (a coco butter that is the "meat" of the coconut and can be melted down for various things).   I give him some coconut manna on a spoon- he loves it.  "Yum, yum, more, eat".   Nothing makes my heart sing more than hearing him say that, as I watch him enjoying a food -- especially if it is a food that is safe.    He lays down for a nap shortly after that and when he wakes up, he has a fever and his cough is progressing, he is whiny and clingy.  He doesn't have any FPIES symptoms, just increasing of symptoms we were beginning to see.  I don't feel it is from the coconut proteins but did the anti-fungal components of coconut push him into an extreme "die off" reaction from the probiotic?   It is possible.  

Dr.Jyonouchi has spoke of her experience of probiotics having an effect on upregulation of the immune system in protein intolerant children.  Which, from what I understand is the same thing as what is referred to as "die off" in complimentary medicine.   The immune system is activated because of the "toxins" - by products of "bad" gut bacteria breaking down and being released into the blood as they are broken down and leaving the GI tract.   The various effects of what happens as these toxins leave the body is different in each person (and parts of why this term is not recognized in medical terms as these effects can varied and difficult to point to origin of gut bacteria)...those that live it, see it from a different perspective and many times it takes experience to really help us to understand something.  In a well functioning body, these toxins leave the system almost un-noticed, or with only slight ill effects.   In a susceptible person, the effects can be intense.  FPIES children (Protein Intolerant children) have over-reactive immune systems.   Food is perceived as toxin, even gut microbes can be perceived as toxins in the gut.   Now, with probiotics that cause bad gut bacteria to breakdown, we send toxins into the blood;  where the body is recognize and attack these toxins....and in FPIES case, over-react in attack mechanisms.    It has brought on fevers with Little Man in the past as well (with introduction of bifida strain, with reactions to foods).   His experiences are teaching me....

The next day was his IV iron therapy.  By this time, he has decreased his drinking and his fevers persist, he is getting dehydrated.   I am the one to take him to the infusion center for his IV placement and to start the iron.  I hold him while they search for a vein to insert the IV in.  In his arm they go, under his skin, and the vein jumps away/shrinks.  The poke around a little more.   He is screaming and crying, but I notice he is not as strong as he usually is.  This makes me more sad than the pain of the needle he is enduring, he doesn't even have the strength to fight me.   The phlebotomists were very gentle and sweet.  They stopped trying in that arm but wanted to give his other arm a try.  He needs this iron, he is tired and weak, and spiraling.  I know he needs to endure this little bit of pain for a bigger purpose.   I hold him while they try the other arm, and get it in.   So relieved.   IV iron is infused.    We did IV Iron Sucrose for the first time.   IV iron sucrose is the typical administration of IV iron, but sucrose is corn.  Dextrose is also corn but it is broken down an extra step.   Previously we had used IV iron dextran.   IV iron dextran takes 6hrs. to infuse, IV iron sucrose takes 1hr.  IV iron dextran takes so much out of him.    We do not know if the corn product in the IV affects his corn allergy, we do know he needs the iron and that oral iron supplementation was too hard on his intestines, and he was not tolerating it.    We have to do IV.   FPIES is a T-cell mediated response.   T-cells are everywhere in the body, traveling through the lymph system.   So reactions to allergens can happen on the skin, and even in IV.    The risk outweighs the benefit and we switch to IV iron sucrose.

While he had the IV in, we requested he get some fluids to hydrate him.  We have seen in the past that when dehydrated begins to set in, it spirals him quickly.     His dehydration is not from an FPIES reaction, so we remain hopeful we can stay ahead of it at home.  This IV of saline will help.  We hope....

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?

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).

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 health....to 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....