What if?

The other day I wrote about  trying a new plan, I am hoping to catch up a few posts on how we got to it and how it is going, so far.  

What if?  What if Little man could tolerate foods in a rotational way? Or with shorter trials? Not putting any extra stress of a drawn out delayed reaction trial on his body?  For the past 2years, I have been studying, documenting, logging and evaluating little mans FPIES symptoms and reactions.  

FPIES is a syndrome- meaning that it shares common symptoms grouped together.  FPIES has the common shared symptoms of profuse vomit, diarrhea, inflammation, dehydration, immune response.  But there are also a host of other symptoms, the chronic FPIES noted in some medical literature sheds some light to these other symptoms.  In FPIES not all symptoms are seen in all children although there are main features shared.  For some (many) FPIES kids, they have 1-2 “triggers”, where others have multiple triggers and other non-IgE reactions;  and a few only have a few ‘safe’ foods.   Little Man isn’t the only FPIES child at 2 ½ with 5 safe foods, he isn’t the only one needing supplemental nutrition (although many kids are on G-tubes vs. the IV nutrition he gets).

In a recent communication with Dr.J (a research  immunologist researching Non-IgE allergies in different populations), whom we saw in consult last spring; she relates that she has theories of there being a difference in kids’ responses to the elimination/elemental diet - some respond very well to it, benefit from the gut rest and time for healing and complete nutrition; while others have different responses- that their immune systems respond differently.   What if that is why so many kids are like our little man and struggle to find safe foods after taking much needed breaks?

I keep thinking that when Little man was on foods, as we were restricting his diet more and more- some things were getting better and some were getting worse….I keep wondering if we had just identified the corn trigger and moved away from that, if we would have been able to keep his other foods, or go back to them much quicker.   But because we were lost for so many months, and his system kept getting more sensitized, stopping foods meant long healing times; but then what?   Why have we been unable to add foods back in?   Why does he seem to do ok on a food for a little while  before he starts to show us sure signs that his body is struggling, or has a full blown reaction?   Why does he have this “honeymoon” period?    Why did he respond so well to probiotics and why did he respond so well to antibiotics?  I feel like for him, the answer must be in his gut flora.  Our gut flora even has roles in our immune responses.   So, is this why he has delayed responses?  From the tie to his gut flora?   His body accepts the food initially, or fights too- it has the mediators it needs to  fight it (vs. full shock in the first bites), but then it comes back around and attacks it….is this the gradual change in gut flora from the new food in the gut environment?   It builds to a level that then pushes the body over its coping ability?  The attack methods then win?   What if??  And more importantly,  what do you do about it?  

What if we re-introduced a few foods at once?   What if this worked?  What if it fooled the immune system and we gained a new food or two?   What if he reacted?   Well, he runs the risk of reacting any way we do trials.  So why not try it?   Why not use Little mans body as the guide and push forward- listening to his body signals of intolerance, stopping if he isn't tolerating (whether FPIES or not), making notes and pushing forward.    Ideally, this was the scenario for the in hospital trials (recommended by CHOP) to help us identify what else is making his FPIES complex but also to gain a few foods into his tiny menu.   

So, the next step was to develop a plan, a plan for a rotational trial.  Little mans daddy and I discussed it and we decided on:  3 foods for 3 days, rotate to 3 new foods for 3 days, rotate again and then rotate back.    We picked 9 foods, including beef and eggs from a corn-free ranch 3+hrs away that his daddy went to pick up (that took him all day- that’s a dedicated daddy!).     Healed from zucchini, we were ready to implement a new plan for little man.

Little man decided that his first day was going to be strawberries!  He loved them, ate almost a whole one.  The next day had red-rashy cheeks but otherwise was fine so we offered them again- he refused; and has refused every day since- despite multiple offers.   The next day he did eat 2 bites of pork, he struggled with the texture but I had unknowingly cooked up a stringer cut so I am hoping he will try again with chops.   The following day was potatoes; he barely took nibbles and the next day was an “off” day with lots of clinginess; was it the potatoes or is this too much for him?  Noted, moving forward.  The following day was the eggs- which he was enthusiastic about but each day has eaten less and less.   We tried coconut (flour) and got some all too familiar behavioral symptoms.  Coconut in the form of coconut flour may be too hard for him to digest so I will retry that with coconut oil, then came pineapple which we juiced and combined with some water and he LOVES!   We have also tried beef (hamburger) and cauliflower- neither which he will even touch or want near him!  We will have toddler finicky- ness to deal with I have no doubts but with his relationship with food already being negative and us having no idea if the food is going to cause him to be sick- I am NOT about to make him eat it, or force him or even coerce him.  If he wants it, great; if he doesn’t, fine.   We’ll just keep moving forward.   What if? 

Surviving not thriving....

I used to refer to Little Man as that- that we were just surviving the days, he was not thriving. This is what some foods do to him and I honestly just do not know why. Even before he is having overtly outward FPIES symptoms, it is the build symptoms we know all too well but it is these symptoms that his docs want to see if we can push through, that it is some sort of adjustment thing. Maybe if we knew it was just adjustment or some other intolerance, we could do it… IF I knew that on the other side of this torture was a new food! But, we don’t know that, and for all we do know (and for his history), it is a build to a full FPIES reaction that could be prevented if we stop early enough. And then his system gets so off (presumably from the inflammatory cascade it is fighting on a daily basis while we keep pushing a food his body doesn’t have the mechanisms to tolerate). I’m not sure how long it will take to come back to ‘normal’ (yes, he has a normal).


That is why were supposed to be getting labs throughout the trial. He has a PICC line, enabling us to watch what is happening in his body so that he doesn’t have to go through this additional suffering; so we can match his first signals to what is happening in his body – his body fighting for oral tolerance or his body building to a reaction and each day less and less of the anti-inflammatory mediators are “winning” and more of the inflammatory cascade is taking over.

Through the zucchini trial, each day, he ate less and less and each day his symptoms build more and more. But his stools have evened out from all water/soaked in the diaper, to a thicker consistency but with some significant mucus in some of them. His symptoms are just all over the place. It reminds me of when we did the probiotic, and we pushed through and we got some great results (2# weight gain, increased appetite, happy playing boy) but then he hit a plateau on the probiotics; or he was building an intolerance to one of the inactive ingredients (which I am suspecting more now that he “failed” them after stopping them in August, and then re-introduction of them recently. And then my mind goes to- what if he was building an immune response to the probiotic ingredients all along and that is why he had so many complications this spring/summer? Why he had colitis with each food introduction, why he has had small intestine damage on the scopes, and why he has had persistently severe anemia. It was as if the probiotic was helping him with the gut flora but then hurting him with the intolerance to the extra ingredients. A change in probiotic to one with no added ingredients only made our picture so very messy as his system clearly did not tolerate those. And yet, my mind goes back to those beginning days on probiotics when we learned so much about how his body goes through so many FPIES-ish symptoms but that nothing was building or consistent, and it all evened off and we got great results (even if just for awhile). My mind keeps going back to where my original thoughts were, when he was just an infant….that there is something wrong with his gut flora- that any dramatic change in that alters his system and that too many times, his body can’t cope with those changes; because it doesn’t have the proper support. When he was breastfed, he had the support- again, another catch 22…where the breastmilk was giving him protective effects but it was still upsetting his system- and too much upset just tipped the glass over.

I didn’t WANT to think it is the zucchini itself. So, what is it then? Why the build? Why tolerate for a few days and then crash and roll? Why so many foods causing these symptoms and eventually (build) causing a reaction? Why can’t his body “win”? My gut says it’s his gut….

Halloween Screams and Probiotics

I am a little behind on the blog, so much going on!  Over the next few days, I am hopeful to begin filling in some posts to update as we now into a zuchinni food trial!  So there is much to share, and still so much to process. 

Little man was on a 10day course of antibiotics after being discharged from the hospital for the line infection. That course was set to finish Oct.26th. I began to think about how this long course of antibiotics, plus the multiple antibiotics during the hospital stay, would be robbing his body of bacteria- good and bad gut flora. Ridding the body of the “bad” gut bugs is a good thing, now how to ensure the “good” gut flora flourishes so that there is homeostasis in his gut: where the beneficial gut flora reigns, the “bad” gut flora remains to do its job keeping the fungal’s at bay.


We had stopped the probiotics he has been on since March, in August after a switch in brands caused some questionable symptoms and coincided with the scurvy he developed. The beginning of his probiotics last March was very favorable for him, he gained weight, his appetite increased, his labs leveled out, his hemoglobin was stable, he was at a baseline we hadn’t seen him at in a long time. However, he quickly hit a plateau so I set off to find a better fit- first I gave him the probiotic in 2 doses, a morning and an evening and that seemed to help; then I thought if that was helping, I wonder how he would do with the probiotic in his formula so he was getting a continuous “feed” of it all day, and so the probiotics were in his gut in an environment (with the food directly) that would support their growth at optimal levels. I can’t change his diet to encourage that (with foods referred to as ‘prebiotics’) so this seemed to be a good answer; and he again responded well to it. I don’t remember exactly when he seemed to be having a plateau or something again, but I thought he needed new strains- maybe the strains I was giving him was creating more dysbiosis within the beneficial bacteria. I tried adding a strain (bifidi) and he had too many symptoms to continue, I tried adding a new line (ProBioGold)and he developed symptoms, fevers and even an ear infection (his first and only!). Back to the CD-Biotic (3strain probiotic from Kirkman labs). Then, following advice from the Functional Medicine doctor we saw, he was concerned over this combination of probiotics and felt Sam needed custom probiotics; he had a guy (the “bug guy”) that did this very thing; so we switched to Custom Probiotics. That brought us to August when he had symptoms and then developed scurvy.

Now, the antibiotic brought us to a great baseline; all to see it slipping away with reintroduction of the probiotic? Does this make sense? Is this die off or is it a reaction (maybe one he was having chronically all those months) to the filler ingredients in the probiotic or even a reaction to the strains? Initially I started with the CD-Biotic, which is the one he responded so well to in March and the one we felt he did well on for a long time- even putting it in his formula mix. He had symptoms and I worried the long course of antibiotic was too much and 3-strain probiotic was too much to start him off with; so I switched to a single strain I had gotten to try and add to his 3strain a few months ago, or try in place of it since something seemed off. Dr.Jyonouchi, the research MD we saw in NJ (in Feb) had said he would need to be on a low strain (single would be preferable) as his system was so severely dysbiotic. After trying a few days of CD-biotic, with these symptoms of uncertainty, I thought I’d give it a try this time around….

Which brings us to Halloween screams. I had given it to him that morning for the first time (I worked over that weekend and I didn’t want to do anything while I wasn’t home). I thought it was attributed to him being upset that he couldn’t have the candy he saw us pass out to the trick-or-treaters. It was a bit irrational and extreme; when he had it the next night over not letting him dump water on the floor- was starting to wonder if we were seeing a pattern? That something simple was setting him off because he was having some underlying pain/inflammation/whatever-happens- in- his- body- during- a- reaction. I skipped the next day and he was fine. So, I gave it one more time- somewhat reluctantly…and, like clockwork, ~8hrs after he consumed the probiotic, he is screaming and screaming and screaming. Irrational, inconsolable. Other things I notice is that he is sweating (from the fit) but cold, also he is gagging every few minutes- kinda like you would hear from a typical kids’ crying fit when they are sobbing so much they begin gagging on their snot…only he doesn’t have snot and he’s not crying as much as he is just pure screaming. And the gagging is more like he is throwing up in his mouth and then swallowing it.  And even his brothers recognizes the screams and the pattern, and say “first it was the Halloween candy, then the next night over the water/ice, and now this? What is going on?” Also, in the night on these nights- he is crying in his sleep and even crying out “help”, it takes a lot of rubbing his rock hard belly and patting his back to get him consoled for sleeping.

I didn’t give it to him yesterday and he was great all day; until he sucked on the Sorry board game when I wasn’t looking (or expecting)…and 8hrs (at 4am) came the screaming – that was fun. And today he is a little clingy. Most cardboard products like that have corn and potentially soy in them- and it becomes more clear that the probiotic is the same pattern of symptoms. His pattern of symptoms. Now what?

This got a little long, and complex- but this is my thought process as we go through the day(s)….everything needs to be trialed, anything could cause reactions. I’m tired.

Shhh...don't tell FPIES....

That Little Man has been doing well recently. The only weird symptom is some insomnia that could either be antibiotic related or anemia related. Insomnia but yet some fatigue- so maybe it is both. He has now finished with his antibiotic and the insomnia has evened out but is having some sleep disturbances (crying in his sleep, frequent wakings and not always out of hunger).  We have started the probiotic re-trial, and there are some symptoms, as we also saw with when we first started the probiotics, symptoms commonly referred to as “die off” where as the gut flora is changing, the by-products of the “bad” gut flora “dying off” are released into the system and the body has to rid itself of these by-products and it can produce some variable symptoms. The key is that the symptoms are variable- and not building or progressing. Taking it slow with introduction of the probiotics can help control the die off, if the symptoms are too intense to handle. We’ve noticed a few symptoms but mostly we’ve noticed positive symptoms of giddy mood, energy, good appetite, improved talking (ok that could be coincidental but he’s started using 3 word sentences last weekend). We’ve been enjoying having this baseline, makes me anxious to be doing food trials in just a few weeks- I want to just hold onto this time for a bit longer, knowing that the food trials could very well potentially make him sick/in pain….

The set back of the food trials is on my mind a lot, we were all set to go in 2 weeks ago; and that we didn’t- I feel like we’re in limbo, waiting to go to the hospital for the inevitable and yet looking forward to getting it done…and potentially getting some food for his tiny menu from it, or the very least- learning more about how his body is working and why we’re struggling so much with so many foods.  

We got blood cultures last week which tell us if the antibiotic course has helped his body fight the PICC line infection, to test for any signs of the bacteria in his line remaining after the long course of IV antibiotics. We got the results today- negative! The line is CLEAR of bacteria, no lingering bacteria to cause an infection! This is such great news and now we can proceed to the plan of food trials, where we were a few weeks ago before all of this happened. I have thought (and wrote here about) the setback this infection has caused but there is a peace of heart knowing that everything happens for a reason. With that Faith, I have been able to get through this difficult time of the infection, sepsis, hospital stay; but I admit I still have had lingering difficulties with not knowing or understanding the plan, the next steps. I’m a planner- so FPIES often has me turned upside down. I’m learning the difference between planning for the future while trusting in my Faith to intervene in my plans as needed.


I will admit that I feel better today though, knowing the infection is clear and a plan (re-plan) is forming. He will get IV iron this week as his hemoglobin is dipping low again (low 7’s now, normal is 11); and then next week he’ll have a baseline endoscopy before food trials the following week.
All in His plans…trust….

Complete Trust in God

Do not look forward to the trials and crosses of this life with dread and fear.  Rather, look to them with full confidence that, as they arise, God to Whom you belong, will deliver you from them. 

He has guided and guarded you thus far in life.  Do you but hold fast to His dear hand and He will lead you safely through all trials.   Whenever you cannot stand He will carry you lovingly in His arms.

Do not look forward to what may happen tomorrow.  The same Eternal Father Who cares for you today will take good care of you tomorrow and every day of your life.   Either He will shield you from suffering or He will give you the unfailing strength to bear it.  

Be at Peace then and put aside all useless thoughts, all vain dreads and all anxious imaginations. 

                                                                                  -Saint Frances De Sales

Busy week

Well, we've been home from the hospital for a week now (seems longer- it's always busy trying to catch back up after being in the hospital!).


Last Sunday, we went to the pumpkin patch, Little man was having a rough sort of day- he enjoyed playing but was tiring easily. We suspected it was from not getting his TPN the night before. Big mommy and daddy mistake, part of being in the hospital for a week- no milk in the fridge for the other boys’ breakfast; and no tubing for his TPN administration. We hadn’t realized we were short! We had the TPN bags, but the wrong tubing was sent! It was a weekend, we didn’t expect that anyone would be able to get us the tubing we needed until Monday, so we upped his formula intake (of course) but we were unsure how that was going to work out for him.

By Monday morning, it was becoming more clear that something wasn’t working out for him- but now we had a few things in the differential. A water bottle on Friday, found to have “gunk” in the sip valve; missed TPN for 2 nights, a line that wouldn’t flush the antibiotics through and we had to “push” it through (potentially putting bacteria into his system- not enough for full sepsis but…), or was worse yet- was he reacting to something like his new brand of hemp protein powder. Ah, the fun times of FPIES guessing games. A delayed food allergy, you have to look at a minimum of a 24hr.window. It gets muddy sometimes!

He had labs drawn on Monday, and my concerns grew as his labs confirmed that something wasn’t right. I continued to watch him through the next day- I was concerned that he may be heading downhill. I contacted his doctors and decided to continue to watch him through the day, and get his Thursday labs done on Wednesday to help assess- and make a plan if needed.

Thankfully, by Wednesday he was showing improvements and his labs confirmed this. We still don’t know for sure what caused this, but just thankful it was short-lived and his body re-cooped quickly. Thursday and Friday, he began to be more and more himself. He is still getting IV antibiotics 2x/day (morning and night). This will continue until the 26th; and then we will get cultures to see if the long treatment of intense antibiotics has worked to rid his blood of the bacteria. Good signs are that he is looking good, acting well, and his line that had redness around it now does not. I pray this treatment has worked.

One other thing noticed in his lab work is that his hemoglobin, that was dropping last week, has started to climb up….for the first time on its own- the numbers are going UP! I’m puzzled by this, an am remembering some research I have done on “iron loving bacteria” and wondering if that was happening to him. Well, now he is on IV antibiotics and his hemoglobin is going up- on its own. Coincidental? Maybe. Maybe it is a silver lining amongst this sepsis cloud. Everything does happen for a reason, that I do know.

The next step is to start some probiotics. Antibiotics kill bacteria in the body- good and bad. It may be helpful if it is killing some negative bacteria that is iron-loving; but regardless, his body still needs the good bacteria. Probiotics are found to be helpful during antibiotic treatments. Maybe this is the time when we get ahead of his gut dysbiosis that we know has compromised his gut health and complicated his FPIES?

Reaction, Infection, Nutrient Deficiency?

We get settled into a hospital room and begin getting initial test results back.   They are good. Well, no answers isn't good but ruling out things like meningitis and Guillian Barre is good. Our pediatrician comes to do an assessment, we discuss the recent events and symptoms leading up to today, he discusses that we will wait for the CSF (cerebral spinal fluid) levels to come back and then that will help decide which direction next steps will be.  It is less than an hour and he is back with the initial results, which are clear- no signs of anything concerning. He has consulted with Infectious disease to be sure they aren't missing anything and now we need to explore the other path...his nutrition.

Right now, with so many other things ruled out. This is where I am at too. He either has some nutritional deficiency or he is reacting to the new probiotic.
With the Kirkman's probiotic, he tolerated the Lactobacillus strains but every time I tried to do a bifida strain, he would get a fever or flu like symptoms. An exchange with Dr.J and she advised to stick with the one strain for awhile, that his body was not ready for more yet. That was a few months ago, realizing that healing takes time but we've been stuck lately so when it was suggested we try a new custom probiotics; I thought it was worth the try as well.

We've been getting fluctuations of symptoms- symptoms can happen when starting a probiotic, especially if there is severe dysbiosis of gut flora, like little man surely has. I tried to increase the dose and he had a bloody diaper so I backed off a week ago, now today- this morning- he had blood in his stool again. My suspicion of the probiotic grows...
I called the "bug guy" tonight as soon as I got home from the hospital. He reports that his probiotics are clean, no added/inert or cultured ingredients. My question is: is he reacting to the ingredients (unknown) or is he reacting to the bugs itself? The "bug guy" feels it is the probiotic- that his dysregulated immune system is not handling these (tiny) doses. His advice is to stop probiotics for 2 full weeks, or more. If symptoms improve, we can assume he was reacting to the probiotic bugs- and to build him up MUCH more slowly...dissolving the same dose I have been giving him in a cup of water and then only giving him 1-2tsp from that cup/day. It is something to consider but have to admit, I am nervous....

Labs are initially coming back: Hemoglobin is dropping fast, now a 9.6 (last check was 10.3); Sodium is a little low but he's been sick and didn't drink well today; his chloride is a little low- probably for the same reasons his sodium is;his LDH is high but I am not really sure what that means yet. His total protein is low but not sure what that means as his Albumin is ok- although falling. So far, everything else is ok- but we are waiting on some more nutrient ones...especially B-12. (sorry if this doesn't mean anything to some but wanted to share for those who know what it all means). We'll have more insights tomorrow when more are back and we can step back and look at the picture.

My head is still spinning...I do everything I can....he is more and more allergic, his responses only getting worse. I know very well he needs micronutrients that he is missing for a strong immune system, a strong body- but if he is given foods that his body rejects, he becomes very sick and is set back even more. How do I get him these missing nutrients?

We are once again trapped, between a rock and a hard place.  Trapped in evidenced based medicine and objective data with a clinical diagnosis based more on the subjective individuality of the child's own specific responses than any book can teach.

Little man is teaching, and his doctors are working hard at trying to understand his body, but there is just not enough known about the common mechanisms of this disorder to fully understand all the branches it takes off as.   We are thankful our trip to CHOP is fast approaching. We are more-than-words-could-ever-express grateful that our good friends are loaning us their RV (again) so we can go as a family...staying together thru this is important to us.

We discuss TPN with our Pediatrician.   We aren't sure what to do. Could he use some complimentary nutrition right now? We already know he could, but he is holding his weight, he is eating, he got IV iron today, and all his nutrition labs come back all within normal limits- he is not being "malnourished"...his nutrition is not ideal. I KNOW that, I have always known that. I would give my legs to feed my child, to nourish his body without it hurting him.

Potatoes. Probiotics and Molasses....

We started a new probiotic one week ago, he tolerated the first doses so I thought we should try to increase it- as that is the plan...to continue to increase until we get to 3-4baby scoops/day; increasing every 2-5days. By day 3, I was ready to see if he was ready for 3scoops.

Then, earlier this week, I took the boys to Wendy's for dinner, after a busy day. We have gotten much better about only eating out rarely but I still have these times when I fall back on the convenience of it. I get them chicken nuggets and a few baked potatoes, and we head home (when I say convenience- I mean it, it is literally down the road from us), I unpacked their dinners and started to prepare the baked potatoes, standing at the table to do so.  I have informally made a rule that we only eat from our plates at the table (after having served "buffet style"), we do not serve "family style" because having the food on the table is hard for Little Man.  I made a mistake by preparing the potatoes at the table, Little Man moved in to sit in his chair and realized the potato was NOT for him! He screamed, so insulted, so said.....as if I had just taken away his favorite toy-or worse! The cry was heartbreaking, he really thought I had gotten him something- along with the boys.

I caved. He hasn't had potato since he was 7mo.old, when we took food out of his diet.  We don't know if he was having problems with it (don't think so), and has not had it since.   So, I got my potato, that I hadn't touched yet and gave him some pieces of it. He was SO happy...."yum, yum, good".

He went through the night just fine- no issues showed at all the next day either....good signs and the boys started dreaming about all the potato things we would be able to give him.

No issues all that day,and we continue the 2 scoops of his new probiotic. The next day we give 2 scoops again- and then he has blood in a morning diaper, not much and it mixes in quickly. He proceeds to have 3 more dirty diapers that day (when 1x/day is normal for him). What is this from? The potato? The probiotic? Yes, I know better than to give him something while we're still trialing something else, or before his gut is healed, or this complex of a carbohydrate......I just want to feed him.....

Potato is actually one of the foods I am hoping, once his gut shows more signs of healing, that he could tolerate. I am nervous to push him just yet but I feel the blood could have been from the probiotic increase. We go back to the 1 scoop and we'll hold off on anymore potato right now, but maybe soon?

Last night, I was making dinner (no not Wendy's- real food dinner!) and I made Little Man some of his millet biscuits (water, millet flour) and, on a sorta whim, I decided to add some blackstrap molasses I had picked up a few months ago- because of it's high iron content. He had gingersnaps (almost)! - he enjoyed them! AND he had a good night of sleep, and has done well today. So, I search for more ways to play with molasses.

And today, I played with giving him his probiotic in the morning and at night. Dr.J had theorized he may need that, months ago, and I feel he does- he seems to peak otherwise.

He is otherwise doing well, peaks and valleys of the day. His gums are red/bleeding and he's licking wood, but his hemoglobin is good...I teter between proactive with his IV iron, or waiting it out...He's doing well, he's been doing well and I would love to just sit back and enjoy it (and am trying to) but we did that in April and May too.....and he fell fast, and we landed with more IV infusions and a blood transfusion.....

Multi-layered treatment plan?

A lot to think about, alot to process.   Scope, Functional medicine and intestinal healing, new probiotics, thinking about steroids, declining little man, considering TPN again.   What do we do?  

I feel like Little Man's treatment really needs to be layered right now:

1). Healing his villi/restoring his nutrition, his immune system will be out of whack just because of his lack of micronutrients alone. Although I am grateful Hemp is a very nutritious milk and that his body tolerates it well, I am constantly worried about his missing micronutrients. It is the sole reason why we keep pushing things with him- but also the reasons why we aren't getting anywhere...

2). Healing his gut -the Functional Medicine approach is something I can appreciate and really feel strongly that we need to incorporate it into Little Man's big picture and long-term healing. We will work through some new probiotic suggestions- more customized for little man.  Realizing probiotics and restoring his intestinal flora will take a long time- but I need to do these steps to assure not only that we are doing everything we can do now to help him thrive through this illness but also to protect his gut from the things he is at risk for in the future. We've already seen that the addition of probiotics in March had been a major significance to his health when we added them, so I do feel this gut healing is essential for his course.
3). Allergy/Immunology consults- a return to CHOP?? Dr.J (research MD in NJ) mentioned the need for further research into FPIES kids who do not respond to the current treatment of elemental/elimination diet in healing them....that there is further immune system involvement with these kids.

It's time to make some big changes again, we are just too stuck with current plans and he is declining again.   

Functional Medicine

After Little Man's scope, while waiting final results, we had an appointment with a Functional medicine MD about 3hrs. from our home.   Functional Medicine has appealed to me for months, as I am very interested in seeing what things I can do to find root causes of not only Little Man's FPIES but mostly- why he experiences the symptoms he does.   There is an underlying immune mechanism of FPIES, but how it manifests itself in each child can be different.  So, one would think then, that each treatment plan would be a little different....and it may take some out-of-the-box thinking.    We went to the appointment ready to see more of what the outside of the box has to offer.  

My notes from the appt:
•He knows what FPIES is, and that it is a severe gut immune response.

•Would like to see Celiac and other auto-immune genetics testing done as this will help guide treatments (how susceptible are his genetics to these auto-immune and inflammatory conditions?)
•Possible for IgG testing (blood) in the future.

•Hyper-permeability of the intestines will result in reacting to proteins once previously tolerated- could be building up an intolerance to something in his regular diet.

Hyper-permeability can be from:
Reactions/immune response
Gut flora
Nutrition (lack of nutrients)

•Would recommend a Nutral (?) test (urine and blood) – tests for nutritional Efficiency (vs.deficiency)- to see how well his body is utilizing the nutrients he is getting.

•Glad to see he is on a probiotic and tolerating it (acknowledges that you can react to a probiotic because of it being cultured on dairy if you are dairy intolerant), wants to look at other strains for him. He was intrigued that he is doing so well on sacchyromces strain. Would like to look at getting custom probiotics- strains made just for his profile as well as compounded just for his needs. Knows a PhD (the bug guy) that does custom probiotics to see if this can be done.

• Agrees with our GI that, right now, he absolutely needs TPN and that it presents with a unique and beneficial opportunity for working through the probiotic strains introduction. Was glad to hear he tolerates TPN well, from his history.

• IgG powder, feels he would benefit from this- we looked at the powder he carries and it looks “pure”, but he will get in contact with the guy who makes them as they are friends to be sure there are no corn (or dairy/soy) ingredients.

•Pancreas elastase stool test showed “robust” pancreatic enzymes but reports that only 10% of enzymes are put out by the pancreas, the rest are from the brush border- which he acknowledges he has none right now (with inflammation/permeability)​.Would like to find an enzyme product that he could tolerate, as this will be beneficial for helping his body to breakdown foods.

•Agrees 100% that we need to do things systematically and slowly, one thing at a time and monitor each step made.

•Acknowledges that there is no one thing to do that would be the “click” but that we can look in all these “corners” and find things that help piece it together for him to thrive through it.

•Above all, needs a collaborative effort- not just from other MD’s on his team but mainly from us as his parents. He will suggest things and I will need to know if it is something we’d like to try or not.

•Unfortunatly, it does come down to the parents managing a lot in these kinds of cases; we know our children.  It is a lot for parents.  Supportive doctors can help.

•Discussed his soy and corn reactions- he confirms Dr.J theory on the cytokine storm and relates that it is localized and not full organs (as it reports in literature). Avoid soy. Corn needs to be avoided in all derivatives, acknowledges this to be very difficult to do and echo’s Dr.P (allergist) in a “tiny menu”.

•Interested in being put in touch with Dr.J (research MD in NJ) shared those study results with him and he acknowledges that the results are not concrete and really don’t tell all but can be used as a tool (along with many other testings-stool, blood, urine, genetics, etc) to help guide treatment/next steps direction; especially when you hit bumps in the road.
•Feels my instincts on that Little Man's severity is directly linked to his gut flora is right on and that the focus needs to be on correcting his dysbiosis; and this will help correct his over-reactive responses to every.little.thing right now.

FULL day, lots to absorb and process, lots of my own research confirmed.   A new doctor to add to our resources for Little Man's team.   A team to keep him thriving through such a confusing diagnosis.

Processing through probiotics....

More on probiotics?   YES! We continue to observe significant changes in Little Man since starting the probiotic.

A quick recap: initial changes were increased appetite and “die off” or upregulation of his immune system changes. Gut flora is a large piece of our immune system. Much research has been done in recent years as to how much the gut impacts our immunity. Probiotics help the resident gut flora to thrive, strengthening their numbers and power and thus, in turn diminishing the “bad” gut flora strength and numbers. Keeping our gut flora in homeostasis influences all systems in the body for proper health. It becomes more obvious just how out of homeostasis Little Man’s flora was as we work our way through the probiotics.


Once the gut flora was adjusted to the daily probiotic, we began to see a plateau effect, and experimented with higher does, more doses per day, and even added probiotic strains. Added strains were too much on his system at this time (too much upregulation on an over-reactive immune system?), Higher dosage was too much on his system, and more doses throughout the day were helping and although he loves the taste of his probiotic, he was starting to tire of the medicine cup routine. He couldn’t handle increased dosage but he could handle increased dosage times. This is when I got the idea to add it to his formula mix so that there was little doses multiple times per day. He loves the taste of it, it increases his appetite- both reasons to drink more formula and maintain or gain more weight.

Beyond increased appetite and resultant weight gain, we have noticed better sleep, better mood and hopefully what looks to be a slowing down at least of his vicious cycle. The vicious cycle we’ve been trapped in for so many months, with probiotics, he re-coops after a reaction easier, he bounces back better, he experiences less build symptoms. But, miss a few probiotic doses and we notice what even looks like reaction build symptoms.

Is this a clue into his build symptoms? Another piece to his puzzle? We have found out where his cytokine “break” is- in his candida responses and in his Th17 responses….both tied to the GALT and gut flora. So, when he begins to take in a food and his body is not properly digesting it, the food byproducts begin to impact his gut flora, which in turn cause his body to attack itself and build up more “bad” gut flora (yeasts), which in turn makes his gut “leaky” which results in the undigested proteins crossing over into the lymph system and signaling the cascade of cytokine responses for the body to respond to this perceived toxin. His gut flora is causing his atypical FPIES responses? His gut flora is directing his Th17 responses which drive his Th1 responses to attack. Are we closer to the bottom of this puzzle so we can start rebuilding it again?

A switch?



We seem to be at a baseline that we haven't been at in a long-long time.  The last time I remember him being this stable was last fall.....before anemia hit us with a side blow, before soy fail hit us with villous atrophy, before TPN, before re-cooping from TPN and failed vitamin trial, and accidental ingestion's, and, and, and.....

Even his recent reactions (from accidental ingestion's, banana, exposures) have been rough but not as severe as past reactions.  And despite the recent illness from IV sucrose, his body seems to be bouncing back much better than it previously would have.  Why is this?  Is he maturing? Becoming less reactive? Or have we hit on something that "fits" his needs?  

It has taken 2months of playing around with probiotics but we seem to have finally hit on a good strain and dosage for him.  And although it is very delicate dosing, on the days when we get it right- he is such a different little boy.   I have found that he needs 2 capsules/day, of Kirkmans CD Biotic (broken open and dissolved in hemp milk).   He can not have 2 capsules all at once, it's too much.  He does ok when I break up his dosages morning and evening but he has a plateau effect from that.   After his stool study came back and showed that he has no lactobaccilli growth detected, it becomes clear why he plateau's so easily and I have the idea to try and mix it in his formula, so he is getting low-dose, all day long.   This works wonderfully but it has taken a few weeks to work through kinks (and I don't think they are all worked through yet!).    I discovered that I can't put it in too many bottles at once, it goes about 8-10hrs, and then it starts to ferment and he doesn't so much enjoy that fermented hemp milk taste.   Have you ever tasted/heard of Kefir?  It's kinda like that.   Now, that is a good sign- it means those probiotic bugs are active!  It also means there is adequate sugars/carbohydrates for them to survive off of, enough to grow.  Now, do they make it past his stomach acid?  I hope so.  Hemp has a decent amount of fiber; and fiber is what makes a good pre-biotic.    Either way, we're working with what we've got and it's working ok.   I long to get coconut in his diet- to make coconut milk and coconut yogurt and so many other things.   We're working on it, very slowly.  

Good appetite, weight gain, less adverse effects from reactions....all very good things but the best thing so far that we have noticed a change is following antibiotics.  Little man has dysbiosis- meaning his gut flora is off, there are more "bad" gut bugs than "good" and although I still learn more everyday to all the effects this has on health, immune system, the brain even; we see the effects it has had on Little man....with very little oral tolerance, with disturbed sleep and mood, with failing most foods we trial, and with pain.   Pain that I don't completely understand but know is there....a mother knows when their child is in pain.  Pain that has been absent from our everyday now since antibiotics, followed by increased probiotics.  Is this the switch he needed?  

I want so badly to test it out- to try a dozen new foods!  And yet, I also want to just stay here for awhile, not risk causing him that pain again.  And what if I introduce a food that flips that switch back into dysbiosis?  But what if not introducing a food causes him to slip back into dysbiosis again?  What if there is a "good" food to do, what if I pick the wrong food? 

We must go forward.  He needs a better menu, he needs B vitamins, and better Vit.C, and micro nutrients, and variety....and something.to.eat!!  Yesterday, the 4 boys and I drove 40miles one way to get 2# of ground buffalo, and a pound of buffalo liver.  The Buffalo gal even threw in some Elk from a farm down the road, in hopes that Elk may be even better for him than buffalo.   Buffalo aren't typically fed corn.  They graze as they did hundreds of years ago; but some farmers do "finish" their buffalo on corn.   "Finishing" happens with a lot of grass-fed animals, so if you're watching for soy or corn feed- always check to be sure they are not "finished" on corn/soy.   Adding the corn/soy feed in at the end likely gives them less "gamey/grassy" taste to the meat.   Little man's corn trigger is quite sensitive so we do not want to take the chance.  The buffalo gal was worried that her buffalo, being free range may come in contact with some corn-like grass over their lifetime; she felt compelled to inform me this.   I am taking the chance that it will not be an issue- it's all about the trials anyway?   But, she wanted us to try Elk first as they are not free-range and are sure their diet does not consist of any corn or corn-like products.   I also had her check with the butcher/processor, to be sure there is no spray or preservative during processing that would come from corn.  The things I never thought of before having a child with a corn allergy.....

We will give him another week or so, to be sure he is healed past the recent illness.   The IV sucrose was not in his gut- so we feel he shouldn't take as long to heal from that, despite how sick it made him that week.  We will wait for good weight gain to show itself, and to continue this baseline we see.   Then, Elk, Buffalo, continuing coconut, and some vegetables? 

Vicious Cycle

Why is it that nursery rhymes, quotes from Disney movies, and Dr.Suess come into my head when I am processing through my day?   "We can't go forward, No way to move back.....we are stuck here, stuck at that crack in the track" (Thomas the Tank Engine Dr.Suess style)   Or, from my 3yr.old...."just keep swimming, just keep swimming" (Finding Nemo).

As I look over my notes, the logs I keep for Little Man, it becomes more obvious of why his FPIES is so complex.    We are trapped in one vicious cycle after another.  The key to unlocking his aytpical FPIES will be in stopping his vicious cycle.    But how?  

His complexities lie in his Th17 responses.  A response that is not completely understood, and currently is not even studied in relation to FPIES (it is that "new" of a discovered mechanism).  It is exciting to see that there may be an explanation behind his atypical FPIES but without more knowledge- there is little to do with this information....except more research....by me.   Another critical component of his FPIES is ongoing anemia.   My instincts say there is a tie-in to his severe gut dysbiosis and his anemia.   Iron is absorbed primarily in the small intestine.  Frequently, those with inflammatory bowel disorders can have anemia as a co-existing condition.  Little man has had chronic inflammation many months of his life, and chronic gut dysbiosis probably all of his life.   We simply can not get ahead of his vicious cycle without knowing more of his mechanisms.  And yet, we need to make decisions about what to do next, what to trial next, what best way to treat his anemia, or his reaction symptoms.  

Following IM Rochephin antibiotic, little man had his all too familiar pain attacks.  A trip back to the pediatrician to check on his ears (the reason for the antibiotic) and they were healing well, no signs of infection.   This confirms that his familiar pains are that of his stomach aches.   I had the thought to add the probiotic to each bottle, after finding out on the stool studies that he has no growth of lactobaccilli detected in his stools.  That information, coupled with trialing the lactobaccilli probiotic, and seeing a plateau affect.   This seems to have really helped.  But then quickly discovered that after ~24hrs, the probiotic was fermenting in the formula (actually a good thing- creating Kefir without realizing it) and was not a taste Little Man was interested much in.   He does enjoy the taste of the probiotic, has since we started it- just not of it fermenting! I have worked through a few changes in my formula recipe and making and again improved on his formula- fitting his specific needs. 

We now notice significantly less crampy pain that has often become a chronic part of Little Man's cycle.   Is this the affect from the antibiotic or from the increase in the probiotic?  Or is it a combination of both?  Will he be able to tolerate more foods finally?   

We are hopeful, until....

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....

The Spiral...

We haven't been doing food trials.  We have known for many months that something is wrong with Little Man's digestion, even his "safe" foods, he can only handle in very small increments....they don't show any signs of FPIES trigger reactions but too much still will cause some gut discomfort and sleep disturbances. 

Dr.J advised that his gut is in severe dysbiosis and taking steps with food trials will only further this unless and until we correct it.    We need to push through with probiotics, we need to address treating the potential overgrowth of bad bacteria if the probiotics alone can not regulate the dysbiosis, and we may need to consider enzymes to help further his digestion with food trials, following probiotic treatment.  His gut has been in a state of dysbiosis for quite some time.  It is going to take time to heal that.  

Little Man has been on the CD-Biotic from Kirkman labs since returning from that visit to the PCRCD, with Dr.J's recommendation to start with a slow introduction of a single strain probiotic.   We had a rough start, some would refer to as "die off", Dr.J called upregulation of the immune system in response to the probiotic strains (I think they mean the same thing, one is a medical term, the other a everyday term).   Noting that with these symptoms, we were able to push through because nothing was significant or building or cascading, and it subsided completely by day 9.    We had good increase in appetite and mood and he gained weight.   Things were good, but we were noticing a "plateau effect", the probiotic wasn't lasting all day.   We broke up the doses, doing one morning dose and one evening dose.   This seemed to help some but we were still falling short.   So, either he needed a prebiotic or it was time for the addition of a bifida strain.   Dr.J left it up to us which to try first....knowing he could potentially react to either, or both.....
Here are my notes from those days:

3-12: 1st dose Bifida strains + CD Biotic. Woke up with fever from nap

3-13 Skip bifida, + CD Biotic. Ate poorly, fussy, pallor, chewing on wood, very crabby in evening.

3-14: Skip bifida +CD Biotic. Ate poorly, rough day, very fussy, very off, bad breath, shiny BM, crying in sleep

3-15: Bifida strains(2nd time)+ CD Biotic.  Very fussy all day.  Lab check today, CBC all within normal limits (may be the first time in his life!)

3-16: Bifida strains+ CD Biotic.  Seems to be doing better but ate chalk, then spit up 2hrs.later

3-17: Bifida strains+CD-Biotic.   Blood in stool, whiny a lot, gave Tylenol at night (so fussy/pain?) ?ing bifida strain, or from chalk?

3-18: CD-Biotic. Hold bifida strains. Tried banana. Better day- slept well last night, normal activity, but then up a lot through night after banana.

3-19: CD-Biotic. Nibbles banana. Slept better No bifida, ate well

3-20: CD-Biotic. Licked banana

3-21: CD-Biotic. Cough, runny nose, fever

3-22: CD-Biotic. Trouble going to sleep for nap

3-23: CD-Biotic. Try bites of banana again. Trouble sleeping, decreased appetite

3-24: CD-Biotic.  Decreased appetite

3-25: CD-Biotic. Decreased appetite, trouble sleeping (up every hour all night last night after 12:30!)

3-26: CD-Biotic. Plum organics peach in millet muffin tops (semi-retrial of plum organics brand)

3-27: CD-Biotic.Millet muffin tops

3-28: CD-Biotic. Ate ok all day but ~8pm, coughed and threw up

3-29: CD-Biotic. 

3-30: CD-Biotic. Restart bifida strain. Difficult with nap but ate ok and slept well overnight.

3-31: ProBio Gold. Napped easily, morning BM had blood

4-1: ProBioGold. Rough day, up through the night last night and coughed and threw up a little Fussy and clingy all day

4-2: No probiotic. Decreased appetite, awake a lot through night last night but didn’t want to eat, less wet diapers, fussy, tired, played very little today, pallor. Issues from ProBioGold?

4-3: No probiotic. Diarrhea/liquid BM, +Smell; otherwise doing better today Reacted to ProBioGold??

4-4: No probiotic. Bites of banana (asked for it). Green shiny BM.

4-5: No probiotic. Ate puree peaches. Lots of crying through the night last night, poor appetite all day. Recooping from ProBioGold or from Banana? Needs probiotic. No more banana

4-6: No probiotic. Difficult sleep for nap- pain, kicking legs, couldn’t stay asleep, Morning BM full of mucous (?banana)

4-7: Restart CD biotic. Appetite still poor, still some mucous in BM. Clearly seems to need probiotic.

4-8: CD biotic. RRD, Pallor (lips and eyes), fussy in afternoon. Appetite improving.

4-9: CDbiotic. Pale. Skipped morning probiotic

4-10: CD biotic. Cranky, lots of gas, struggled with nap. Readjusting to probiotic or still re-cooping from banana or ProBioGold?? +BM with mucous and blood.

4-11: No probiotic today, no BM today.

4-12: CD biotic. Up for 2hrs in the middle of the night last night! (?from missed probiotic?)

4-13: CD Biotic.  Nectarine (mistake- thought frozen nectarines were frozen peaches, until opened bag and ready to give it to him).  Crabby all day.  Blood & mucous in evening BM. 

4-14: CD Biotic.  Lab draw today, rough afternoon after.  Poor appetite all day.  Found out Anemic again, hemoglobin 8.8 (normal is above 10.5)!

4-15: CD Biotic. Working on decreasing arrowroot in formula, tolerating it well.  Playing well, happy boy. 

4-16: CD Biotic.  Doing well.  Playing well, happy most of the day, until....he got a hold of a juice box.  100% juice still has citric acid and ascorbic acid added....he reacted, within 2hrs. he was screaming, 4hrs he had a 'reaction' diaper, and 7hrs. later was the vomiting. 

When did we start to spiral?  Did you see it?  How do we stop?  His iron was falling, some time after 3-15, we had it checked that day and he was doing so well!  Maintaining a hemoglobin of 11 for a month.  He had some bloody stools this month, some minor reactions, a fever/virus, some gut flora disruption...but we've barely moved 1/2" forward, and now we're set back again.   He spirals so easily, one false move can set it off and it can be so difficult to regain ground with his "atypical" FPIES.   We still do not know why he is so sensitive.  The findings from Dr.J's research give us clues but no definitive answers as of yet.  It is all still about the trials-take a step, evaluate, take a step, evaluate again.   So, next steps?  IV iron, stool studies, pushing through to get a good probiotic established and tolerated (maybe trying a new one?).   All of this before we can even think of a food trial!

Oh boy, you're heavy!

But I'm not complaining, really!  Except when he gets clingy from reaction symptoms....
  
We haven't had a weight check in a few weeks, with the cold he developed and waiting out results from Dr.J's research, we haven't even been to a doctors office!  It may be a record for us!   I am curious as to his weight....because I am sure he has gained.   Last week, I even had to get out the 2T tote and put away the 18mo. clothes (finally since he is 21mo.old) and get out the 24mo/2T clothes!  He has a filled out belly and cheeks- I look forward to finding out how much he has gained since our last check!

I hope the last few days don't cause him to slide backwards too much, he seemed improved today but he appears to have reacted to the probiotic switch (from Kirkman's CD-Biotic to Kirkmans ProBioGold).  I am still unsure of what he reacted to in it- if it is a strain or a filler (I only assumed it was made the same as the CD Biotic which he was tolerating- bad mommy mistake!).  But, as with what defines FPIES- it is trial and error.   I was giving him smaller doses, being that there were new strains that he hasn't had before (different lactobacillus ones and a new one- streptoccus thermophilus.   A fellow FPIES mom warned me to be cautious with a probiotic that contains that strain, so we were being cautious...trial and error.   The first day, I noticed blood in his diaper- although he has a fissure so it isn't odd to see blood in his diaper.  I also notice his stool isn't as soft as it should be given that probiotics help regulate things.  That night, he woke up crying....I had heard him coughing, I go to him and he is trying to get his shirt off and hand me his blanket- he had thrown up on his pillow, blanket and shirt.  It wasn't a lot- more than spit up but less than FPIES trigger vomit. Was it from the cough or is this the beginning of a reaction?  He had had a few of these cough/throw up already earlier in the week.   We had been trying to see if he could tolerate the plum organic peaches again- in his merry muffins; but it has been 2 days since his last nibble of that...that otherwise appears to be going well, none of the symptoms that he had after his multivitamin fail when I was concerned his body couldn't tolerate even his safe foods (millet and peaches) - as I said at that time, maybe there is something to the fact that he needs only very low fiber foods as to not irritate the intestinal lining.   Regardless, all of his prior cold symptoms had resolved so I thought odd for him to have this cough but did just decide it must be from the cough.   Little man's daddy and I discuss how he has been calmer that day, noting maybe even lethargic.  I remained hopeful that it was just calmness.    We kept busy the next day (Friday) and he was great all morning- playing, smiling, a visit to some dear friends and they were impressed at how strong and healthy and happy he looks since they last saw him.   We had a great morning.  He came home and struggled to settle down for his nap....too much excitement? Finally got him to sleep and he slept well, even through a playdate for the other boys (6 boys in the house!)  Actually, we're very lucky to have such great friends as their boys are very well behaved and no one made any noise to wake up Little Man.  He woke from his nap a little clingy, but not surprising since we had company; he warmed up nicely and began to play a little.   That evening he remained tired, got very fussy and clingy.   I decided he was heading in the wrong direction with these probiotics and I was getting too nervous.  He hadn't eaten well that day either- why?   So, yesterday we took a day off from them but his body was still progressing....is it the probiotic or something else?   I suppose if it is the flora that he is reacting to, it might make sense that it is taking awhile to get out of his system.   I am really not sure but Saturday was a beautiful day and he enjoyed an hour or two of it but otherwise was clingy, whiny, fatigued, maybe even feverish, and in our arms.  He ate poorly and last night he didn't even wet through a normal diaper (where typically I have to change his nighttime diaper once during the night).   In the morning, he had a loose diaper.   Enough, I'm calling it a fail....but what is he failing?  It was progressive, I don't feel they were "die off" symptoms, but maybe.....but not worth risking either.   He gets so sick from fails, I can't push it when there are this many off symptoms.    Today, he returned to a baseline for the most part; he ate A LOT today- and then had a 30min. screaming session that ended in puking before finally relaxing into sleep.   What is going on?  Only time will tell.   He hasn't had probiotic in 2 days, and we will see how he does backing off of them for a bit.   I am sensing now is the right time to do the stool tests I spoke about previously.   We can't afford them any better than we could a month ago but Little Man can't afford to be sick from this trial and error either.    He also can't afford too much longer with no food trials.   He needs this tiny menu we keep striving for....

We will get a weight check tomorrow at the Immunology appointment, stay tuned!

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!

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.  

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?