Mothers Intuition

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

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

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

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

Saturday, December 31, 2011

"Mommy, I need you"

Little man started this about 1-2hrs. before the vomit the other night.  It is new.  Holding out his arms, he stood by me and said “mommy, need you”.   
From there, the symptoms continued to build, whiny and clingy and then throwing things and crying, and then the vomit.   Potato now goes on the shelf. 
As I try to decipher through his reactions and symptoms (symptoms we may have missed before getting to vomit).   My thoughts also go back to when Little man had the sepsis in his PICC line- how the symptoms came on suddenly, the chills/fever/rapid breathing; followed by vomiting….for little man, this happened twice, and then shocky symptoms appeared, after the third time came the full shock reaction.  The body could not expel the toxin because it was in his blood.   How similar is this to FPIES reactions?   The toxin is the food, that is in the GI tract (and “leaks” into the blood) and the body works to expel it (the vomit/diarrhea).   But what happens if the body doesn’t expel it?  Little man doesn’t get immediate to shock symptoms (acute FPIES) from foods; my theory is that they are septic in his body before/instead of that.  The reaction from the food-perceived-toxin is a sepsis like reaction; labs done during this time show that his body is struggling with what looks like an infection.  Continued ingestion of the trigger food “builds” this toxin in the body, thus further weakening the body under this sepsis.  The first time the body succeeds and expels the food, it is a sepsis response; continue this and the body becomes more efficient at expelling the toxin and the sepsis quickly becomes shocky symptoms.  Each food can be different set/order of symptoms to this reaction, as the body struggles to either accept it or reject it.   The mechanisms and reasons to why his body accepts some foods as safe and perceives others as toxins remains a complete mystery.

Fluids help the body cope with a sepsis reaction, they are part of the treatment for it- the hydration helps keep the body out of shock as the sepsis affects every organ. Little man is on IV fluids every night with his TPN, I really have seen how this has helped his body cope through these reactions the past few weeks. And I am grateful. 
And where does the pain come from?  What kind of pain is it?  Recently, I had a touch of the flu- my body was fighting a toxin and it ached all over.  I didn’t have a fever, I just ached everywhere.  I wonder if this is similar to what it feels like for him.   His body is attacking a perceived toxin, so is this how he feels every time?  When he was under a year, I used to give him some motrin to help with the pain- between the teething and the chronic FPIES symptoms, he lived in chronic pain, so when there was a spike in this pain- I would treat it with some motrin.  Unfortunately the motrin only helped some- he would get pain relief for ~2hrs., and then he would be in worse pain than before.  I thought that was odd since ibuprofen was supposed to last ~6hrs!  Once we got him compounded ibuprofen, it made a world of difference!  Pain relief that lasted 6hrs.+ and didn’t cause more pain!    I also remember thinking (and saying) that it seemed to me to be pretty significant pain, that if an adult was experiencing it- we would surely ask for a morphine drip! And yet, my son’s only comfort is occasional ibuprofen.  Well, ibuprofen and daddy or me; and so he says, "Mommy, need you".  

Wednesday, December 28, 2011

Pressing forward & Pineapple Pass!!

We’ve been pressing forward with offering Little man a variety of foods: 
1). Strawberry he ate one, next day had red-rashy cheeks all day.  Refused to eat anymore strawberrys.  Juiced some one day, coaxed him to take a sip- which he did and then looked at us like we had fed him poison, pushed it away and refused any more.  That afternoon he was a complete bear.   Enough, he doesn't want them, coaxing him to take some made him miserable.  Shelve it.
2). Pork- ate 2 bites, got them down but struggled with the texture, refuses to eat again. 
3). Potato- ate only a few nibbles and the following day had significant behavior changes- he has very little enzyme it requires to digest starches so unsure how far we can push this.   We're trying again  (now) with natural potato chips. 
4). Cauliflower- refuses completely
5). Beef- refuses completely (won't even allow the plate to be next to him)?!
6). Pineapple- juiced, 1-2tsp in 6oz. of water and he loves it.  No noticeable symptoms on first days! We have continued it and we do see some bloated belly, explosive stools; but feel this is related to his dissacharide deficiency.  For now, we will call it a pass! We will rotate it and limit his amounts but feel good that symptoms do not build upon reexposure.  
7). Eggs- was enthusatic about, but despite offering in a variety of ways, gets less and less excited about and has building symptoms from less and less nibbles (mostly behavior and sleep). We had been continuing egg all last week, he wasn’t interested in it as much as we had hoped he would be…in the past, for little man, that is a sign that he isn’t feeling well after eating it- symptoms that he can’t communicate to us but maybe include stomach cramps, achiness, mouth/throat itch; all confirmed after about the 8-10th exposure, he wakes up early one morning to fill my kitchen sink with vomit.  It wasn't till bile, but it was significant.    We don't call anything "FPIES fail" if it isn't to bile/diarrhea/dehydration....would it be so if we continued?   Maybe.   We're just not going to find out.  We'll give it at least a year before we try it again.   We're bummed about eggs, we had such high hopes for eggs- and it certainly increased the baking recipes! 
8).  Coconut - significant behavior symptoms from the flour, maybe it is just the fiber in the flour so I tried oil.   I snuck it into one bottle (about 1/4tsp) but the next time I tried to sneak it in he noticed and then refused his bottle.  I can't take that chance so tried it another way- coconut ice cream!  He doesn't like it!  We've tried coconut before- this spring, we got to day 4 with NO symptoms and then day 4 hit and he developed symptoms fast but since they were accompanied with a fever, I knew we had to try again since it could've been something else.
9). Quinoa- made him his "cookies" with quinoa flakes, he tried it one night but won't try it again.
9). What's next on the list?   Carrots, kale, try pork again, try beef again, try quinoa again, ???

We need to keep introducing foods, it is helping collecting data for his varied reactions so we can assess if he has something else on top of his FPIES.  The behavior symptoms are difficult as they can be from his dissacharide deficiency or his FPIES building.   What behavior symptoms do we see that are concerning for FPIES?   As the trials progress, he eats less and less but gets further and further away from baseline/ his “normal”- his tantrums increase (and get more irrational, any tiny thing will set him off), he has started hitting (hard!), he throws things (not good!), and he screams!  his sleep is disturbed as well, and so is his appetite.  He is just not our Little Man, he isn’t like this at baseline, he isn’t like this when we are not trialing foods, what is this beast inside of him? Why can’t food NOURISH him??! I can’t even begin to describe how this feels, to a mom….to not only not be able to nourish him from basic foods, but to have basic nourishing food turn him into this unrecognizable child. 

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? 

Love you through this

The first time I heard this song, I cried.  It (obviously) isn’t about FPIES, it’s actually about breast cancer but it made me think so much of what it takes to be an FPIES parent.  I am by no means comparing cancer to FPIES, but I find any illness can identify with the lyrics of a beautiful song.   Many times, there isn’t anything else but love to get us through.    Get us through the dark and lonely nights, holding your baby who is in pain that you can’t take away; get you through the multiple appointments trying to figure out the complexity of your little man’s FPIES, hospitalizations, procedures and tests, food trials and reactions, hunts for safe foods, pulling them through and out of failure to thrive…

I write this as I am sitting with Little man while he takes his bottle, which I do multiple times a day.  My day is planned around it actually.  Much like when nursing an infant, I would nurse and then know I had 1-2hrs. before I would need to be in a place where I could nurse them again- a private, quiet place- not shopping or out running errands, or driving; but able to meet their needs.   To this day, we still make plans knowing how far we can go between bottles. He will eat while out now, just less- so we don’t have all day or hours on hours to be away from home or he is set back.   He eats better if I am sitting with him.  Maybe it goes back to our nursing days bond, maybe it’s just simply that I’m mom.  Maybe he’s just very routine orientated.  But it is what it is, it is what he needs, it is love, and I will love you through this. 
Even with TPN supplying ~800calories in his overnight feeds, he still needs to eat every 1-2hrs. through the day.  Recently we have discovered some hypoglycemia (more about that in a future post, if I can ever get caught up here); so it makes even more sense that he thrives better on these small frequent meals. 
My 3rd little mudpie, who is 4yrs.old, eats non-stop throughout the day (ok, maybe not non-stop but it sure seems like it some days!).   I had a realization recently that this habit (that is currently an inconvenience because of there being constant exposures to food, reminders of food that little man can’t have, while he watches his big brother eat) will someday (hopefully soon) likely come as our blessing- that to get Little man to eat enough throughout the day (when he has more safe foods and post TPN),also to meet his hypoglycemia needs and his disaccharide deficiency, he will need small frequent meals throughout the day.  Likely, the bulk of these calories will still come from his formula and now the addition of his “juices”.   Currently he only nibbles even his safe foods- either he is just being cautious or he simply does not know that he is supposed to fill his belly; or he is self limiting so that he doesn’t go over what his body can break down in one setting (being that he lacks every digestive enzyme to break down sugars/starches).   But one day, nibbles will turn in to servings, and servings will turn into snacks and snacks will turn into meals.   One step at a time, one day at a time, I will love you through this.   

Saturday, December 24, 2011

Trying a new plan?

Zucchini was a frustrating trial and "fail"; fail in quotes because stopping it before full vomit was needed as it was making little man too sick.  It is disheartening to try a food and not add it to his diet, just as it is a BIG celebration when we can ADD food to his diet.   

For awhile now, I've had theory's as to what little man needs for HIS plan, An Individualized treatment plan.   Taking him down to elemental nutrition enabled us to see what he was still reacting to, corn fail and removing him from the corn syrup in the elemental formula helped to confirm that corn was a chronic FPIES trigger for our little man.   Removing that from his diet enabled us to add hemp, safflower, arrowroot and shortly after peaches and millet.    That is where we have been stuck.   Following his patterns, we learned that our little man has chronic FPIES- that his body doesn't react severely on the first exposure although it does act as a toxin in the body, removing the trigger food, removes the symptoms; but his body struggles to get back to a "baseline" (depending on how far we pushed what was toxin in his body).  Why would so many foods be toxic to his body?  Food that is meant to nourish not only doesn't nourish him but is toxic to him. 

Much of my research, and following little man's symptoms, reactions, baseline, his involvement in Dr.J's research, response to probiotics, anti-fungals, and antibiotics keeps steering me that his gut flora guides his reactions or tolerance.  Gut flora is involved in immune mechanisms in the body, I think this is where little man's FPIES is tied.  Influence and guide his gut flora, influence his tolerances?     When I was building his formula, I didn't trial each ingredient for days on end, we didn't have time to- I added them every few days.  He never had any issues with any of these ingredients.   Peaches were also an easy pass.   Millet puffs were easy, the millet flour was up and down and it did take awhile to settle that it was not going to FPIES but just finding a tolerance level for him.    Removing the millet and reintroducing it helped clear that.  

Little man is a "build reactor", but his safe foods have been safe from day one.  But we've also had foods that look like they could be safe and then they gradually get worse- each dose becomes less and each day symptoms build.   So, what if we shorten the the trial?  Moving forward before his body builds the reaction, before his gut flora changes enough to induce that response? 

The new plan includes just that, trial a new food for 3 days, but not pushing through any building symptoms.  If Little man begins to show his body is struggling, we will shelve the food and move ahead; if he is not showing any signs- we move forward introducing new foods.   What if he builds a reaction to a food?  Well, we don't know that yet.  It's been over a year since we have successfully introduced a new food so we need to try this individualized to Little Man plan.  

Wednesday, December 21, 2011

We need a new plan

Zucchini caused a lot of symptoms and we stopped before getting to full FPIES vomit-till-bile session with dehydration.    Little man suffers for weeks recovering from those reactions, we know from his past all too well. Slow food trials are intended to avoid that, to stop at first signs that the body is not tolerating a food….for whatever reason-.  If his body cannot tolerate a food, it shouldn’t be in his diet causing problems and preventing him from expanding his diet. Unfortunately, for our little man that has meant a very limited diet.   He isn’t the only FPIES kiddo with a very limited diet still at 2yrs.old. It may be because that he has other things going on alongside his FPIES (one being a disaccharide deficiency, others unknown), or it may just simply be his FPIES.
We didn’t get to full FPIES vomit till bile (although we did see vomit);and yet we still had weeks of recovery time- weird diapers with mucus and blood and undigested food, terrible irrational behavior, decreased appetite, not trusting his safe foods, is he reacting to his safe foods?, whining, tantrums….and we stopped before the FPIES vomit.     In the past, doctors not familiar with FPIES, or our little man, have previously advising us to push through until we get to the vomit (and not sure if we’d be advised to stop even then).   With Little man not on an elemental formula, and missing nutrients in his restricted-unable-to-expand-diet; some doctors are sure any symptoms and reactions we encounter surely do not outweigh his needs for the nutrients those foods would supply. I know, from the outside looking in, it seems quite bizarre. It IS bizarre, that his body would not just reject food, but attack it in the way that it does!! It’s very bizarre. But that doesn’t make it not real, a very scary, exhausting reality that his daddy and I live with day in and day out.    Unfortunately, we feel it is poor advice to tell us to push through symptoms that make our little man sick, especially without factoring in his illness complexity.  There isn’t many other ways to put it- it is poor advice to not consider his allergic mechanisms when advising us to treat other symptoms.  I have explained it this way to people- this is the logic we face….it is like telling someone with celiac disease that they need the vitamins in fortified bread so they must eat the bread, even though it contains the very gluten protein they are allergic to. The allergy isn’t anaphylaxis, so it will be fine. NO! It won’t be fine! A person with celiac ingesting gluten is doing chronic, and often silent, damage to their system. It is vitally important for a person with celiac disease to avoid gluten- in any form and in any contamination of. That is how our little man's body responds to corn, and many other of his triggers. His body suffers internal inflammation, oftentimes inflamed before he shows us overt outward signs (FPIES vomit till bile); so we watch his other signs- other signs that tell us that something is causing inflammation in his system. Will his body be able to cope? Will the inflammation subside? Or will his body try to cope, only to exhaust every internal anti-inflammatory mechanism until it is too tired to continue? And then everything starts to go “haywire”. That is what happened with zucchini, and countless other foods we have had to shelve….his little body just gets too tired to continue fighting- so instead of making it, watching as he gets weaker and more off character and unrecognizable, we stop giving that food.     

We are now a few weeks past zucchini, ready for the next trials.  But what we did learn was that an in hospital stay for a trial isn't going to work for our little man.   The symptoms we see and the symptoms doctors are measuring are too different.   We are responsible for keeping him safe, keeping him from being sick and increasing his nutrients.....and we remain his voice during these reactions- FPIES or not.   Where does that bring us?    We need a new plan.....

Wednesday, December 14, 2011

Am I doing enough?

I appreciate this blog.   I am a talker (in case you hadn't noticed).   My posts are often simply reflective of our reality, of what I have learned from it, and sometimes just putting out what we are going through in hopes I can learn from others who read and have experience, knowledge and insights to share.   I process through my thoughts by talking them out.   They aren't always positive thoughts.  We're all human, read what Little Henry's mom has to write about that.   As I read her words, this mom of 4 catching up on her blog as well, updating on how she and Henry have been doing; I marvel in how closely united we all really are. 

Our FPIES world has been difficult again lately as Little Man now turns 2 1/2 and we were supposed to be "growing out of it" by now....and in many ways I feel we are being pushed back to the beginning.   Little Man is thriving on TPN (IV nutrition), and I am so.very.grateful for that.   He has gained 6#- we are about to hit 30# now, as the geneticist that we saw last week pointed out, it is encouraging to see that his body knows what to do with calories, calories that his gut does not have to absorb (or malabsorb in his case).  It IS good, it is all very good.  But he is now becoming dependant on this TPN, he has less interest in even eating- how do we do trials when he only nibbles?   He is 2 1/2 and has no positive relationship with food except to give food to his brothers and watch them eat.  And I am struck with the "what if".  What if he isn't outgrowing this?   What if we don't find him safe foods?  What if we find him safe foods that he refuses to eat, or doesn't know how to?   What if his body begins to reject the TPN?   What if there is something more going on that we are missing?  What if there is some metabolic disorder that is compounding his FPIES that we haven't tested for yet?  What if this new normal is our normal now?  What if?  

I trust in God, it is the thread keeping my peace....I have inner peace knowing that His plan is being carried out.  My worry remains with what part I am playing in that plan.  What does He want me to be doing?   Am I doing enough? 

Sunday, December 11, 2011

FPIES Island

An FPIES diagnosis can be like being on an island. At first, it feels deserted with you standing alone, when you start to explore, you find out there are others on the island, they help find food, and nourish your survival knowledge and coping skills, and help to feel a little less alone in this new world. And you are assured by others that have been there that there are ways off the island; and you know you too will someday find your way off, and you feel less alone. Then you need something from off the island, and you find a bridge or two and you take them, only to be thrown back to that solitary place, on your island. Bridges to nowhere, bridges that don’t work, bridges to solitary islands themselves. So little is known about FPIES, and Doctors trying to help and yet unable to in this clinical diagnosis with misunderstood mechanisms and complexities, are also on an island- an island often with no bridge connecting to anyone else to help the FPIES patient/family.

Too many times on this journey, we have found ourselves alone on this island. In the beginning, we didn’t know anyone else lived on the island and we didn’t know to look for ways off or invite someone else on for help. Then it became clear that our little man needed more than what we could give him, his illness was becoming out of my scope as a mother. That instinct I had all along that something was wrong, was now a burning fire, and the need to find more bridges to connect our island became the mission. We quickly learned that a clinical diagnosis, was easier to file under “mom not coping” (ie mom is crazy) than to say medical science did not know, understand, much less be able to help. We tried so many times to connect bridges between different islands, but the complexity of little man’s FPIES needed a strong bridge to a specialist….which, after much searching and persistence, we finally located that bridge. We were happy to finally use it and didn’t know if we’d need any other bridges.

Unfortunately, it soon became clear that we were in need of other things for survival on our island so we went in search of other bridges - only to be quickly sent back to our island- our little man has an illness no one wants to touch…..even though he has needs for these bridges to work, they do not. A corn allergy with an allergic symptoms to even an elemental formula is too scary for most to deal with, so it becomes easier to simply send you back to your island, even though this little boy still needs help. It is left up to the parents to find that way, keep searching for another working bridge. Some really, really long bridges are found- but the cost is very high and the journey long to use those bridges; especially when the shorter, closer bridges should work. Last week we found a bridge that other FPIES families have been using, we hope to be able to as well….maybe we don’t have to travel on the long, long bridges; but maybe we still will……

I don't mind the island, I just want off this island long enough to get what is needed for survival….which bridge is that on?

Saturday, December 3, 2011

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….

Zucchini will not be added to Little Man's safe foods....

We started zucchini last week.....we're doing in hospital trials for the first 3 days (not challenge, trial) to see if we can begin to put together more pieces to Little man's puzzle of multiple intolerances and reaction symptoms- is it all purely FPIES or are there other intolerances that are compounding his FPIES, giving us further foods to not include in his safe foods?   He does have enzyme deficiency- he lacks the gut level enzymes to digest sugars/carbohydrates/starches; so that will continue to make it more muddy for him.  The other question is does he have a metabolic component- something we haven't yet tested for?  He recently had some incidental lab findings (when working up a low blood sugar) that may be clues to some metabolic issues compounding, we are getting a work up with a metabolic MD now so will update more on that later.  The other component we are looking for is an auto-immune.  Does his body attack itself because of the FPIES and then not be able to turn it off?   Does his body attack itself from not tolerating a food and then turn on his FPIES?   We simply don't know.  The goals of food trials right now is to collect more of this data so we can analyze better - if there is something else we can be doing to help him thrive through this diagnosis.  Are we missing anything?   There is a good chance that we are not.  There are a few handfuls of FPIES kids who do not have more than a dozen foods until they are 4-5, or older.  This could very well be simply what is happening to our Little Man as well.   The complicating factor is his severe and sensitive corn allergy, and that he cannot tolerate the elemental nutrition many other children survive and thrive on for these years while they wait for their body to heal.   

Is zucchini a full FPIES fail?  We didn't get to full FPIES-to-bile vomit so we won't ever know 100% sure but he did have vomit, he did have diarrhea, he did have dehydration.  Bottom line, he simply got to sick- from such little amounts of food, that he was increasingly refusing to eat....less and less ingestion causing more and more symptoms:  

The first day- he had about 1/2tsp, he had some off symptoms but nothing that i could definitively identify as a reaction symptoms build as they were muddled with him being 2, and in the hospital.

The next day, his body was having some low blood sugars (before we even did the zucchini); and then he went into acidosis (low bicarb and continued low blood sugars) after the zucchini; and had a full blown "episode"- full tantrum where he was irrational and inconsolable, and he was drooling (not ok, not normal); and choking. He took about 45min to calm down (this is a classic type tantrum when his body is struggling). The next morning, his neutrophils were declined and his hemoglobin fell an entire point. All of these labs were written off to be related to something else; so we were encouraged to push forward. Although Sam was not interested in eating any more zucchini. So, we switched to baked in form.

Day 3- he ate only nibbles but seemed to be ok; no repeat of symptoms from the day before and his labs were all re-cooped. It appeared, at this time, that his body was trying to tolerate the food- and winning. We were optimistic. We went home the following morning.

Day 4- he had some "cookies" (zucchini/millet/oil/peaches) at home, did fine but was having some "poop soup" diapers but not really any other symptoms- and was just happy to be home.

Day 5 - things start to get a little muddy, poop soup diaper again, starting to get whiny and cranky off and on.

Day 6- I give him a Tsp of boiled, purred zucchini again- thinking if he was building to a reaction, we would see it from this controlled amount (vs. baked in). He had no concerning or building symptoms that day, he slept well overnight- doing well overall.

Day 7- eating zucchini/millet flour/oil biscuits and loving them- doing well all day; gagged on a piece of zucchini (insisted on holding a piece of raw zucchini I was cutting up to prepare to freeze and bit a teeny-tiny piece off)...or at least I think it was from the zucchini. It was enough to cover his plate but he was fine after. Although he has choked before on foods (due to texture) and not thrown up like this, so….

Day 8- slept well overnight, poops are no longer loose but do have some mucus in them (but that isn't so out of the normal for him that it would alarm me)- was doing well in the morning but started to really get "off" today- lots of whiny/cranky, looks so tired, and pale.

Day 9- eating less and less - of these baked millet/zucchini biscuits, whiny and clingy, more mucus and smell in his poops, seems to be having low blood sugar episodes,....

Day 10- rough day, decreased appetite, decreased wet diapers, looks terrible (purple around eyes), disrupted sleep (crying in sleep a lot- for naps and night). Had some millet/peaches waffles (no zucchini- made biscuits but barely nibbled them)- loved the waffles!

Day 11- same as yesterday but worse. Each day he eats less of the zucchini but gets worse. He is declining. Sleep is disrupted. Mood is terrible, whiny and angry- hitting and sensitive...

Day 12- today is day 12 and he's a mess. There isn’t' anything significant happening in his diapers. He had this weird drooling this morning, put his hand in his mouth, gagged and threw up (caught me off guard as he doesn't do that when he's at a baseline) but don’t' know what to make of it. Feel he had low blood sugar episodes again today. He hasn't played AT ALL today- he's been in bed watching movies all day, or in my arms, or sleeping. He is taking his bottles better today (had been declining for a few days).

Day 13: He slept ok through the night, except when he woke up at 5am, crying, I notice that his diaper is dry- completly dry.   He has been hooked up to IV nutrition for ~8hrs, and he has not urinated.  I calm him down and we go back to sleep (he does not want to drink anything).  When we woke up at 7am, he had soaked through his diaper....something caught up and "clicked"...whew.    But that was weird, he is always wet through well before 5am- between drinking 30-40oz./day and getting IV nutrition through the night; he is an overly hydrated little man.  So, any signs of dehydration- even temporary, concerns me.  
This morning is his weekly lab draw.  This lab draw will help me decide if we will continue to challenge zucchini or if we need to move on.   If his internal body shows me the signs of struggling that we are seeing externally, we will need to stop.  If his body isn't showing any signs of struggling, we will challenge with a full dose today and measure labs 4-6hrs. later and the next morning so we can get a more clear answer. 
I keep him hooked up to his IV nutrition until the moment the home health nurse draws the blood.   The home health nurse takes a few notes and then takes his blood to the lab to be analyzed and we wait.  I am nervous about "challenging" him today with zucchini as he is just a mess.  He is whiny and clingy and clearly not feeling well.  A few hours later, we get the labs and they reveal a very low neutrophil count (white blood cells)- a pattern for Sam following a reaction that we have observed in the past is this neutropenic look to his white cells. His hemoglobin is also falling again.   And, most concerning- his blood sugar is quite low (45).  His body is struggling to maintain his blood sugars- and that is while he is getting nutrition infused into his blood stream!  His platelets are on the rise but not out of range of normal, although we have never seen them too high since starting TPN- but he gets heperin in his line to keep it from clotting over, so I would imagine we won't get true readings with that; so trends of increasing is what we're watching for.   Another lab that we would see if his body was struggling, another one that is in his pattern, is his bicarbonate levels- he becomes clinically dehydrated BEFORE the vomit/diarrhea.   I suspect it has something to do with the sepsis state his body is in while "fighting" this reaction.   His bicarb is not low....but I am susicipious this is being masked by the IV nutrition (thankfully!) -- remember the dry overnight diaper at 5am?   That tells me more accurately what the IV nutrition might be masking.  

It's enough for me, the outward appearance and suffering of our little man and now his pattern of labs indicating that his body is struggling.   There is no reason to include zucchini in his diet, we won't be able to move foward with other foods, he's not thriving he's 

How is Zucchini going?

We started with zuchinni because it is an easily digestible food, low sugars, with nutrients he needs, and can be baked into the one food he loves- his merry muffin/cookies made with his 5 safe ingredients.

So, the first day we gave him a tiny slice of steamed zucchini; he had some symptoms that afternoon that were notable but nothing to write home about, but note and move the next day I got him to take a tsp of boiled, pureed zucchini (that I pureed with some of the water I boiled it in- was that bad?) - he let me feed him a teaspoon and then would not take anymore. At the 4hr.mark, he had this terrible-terrible and classic-for-him irrational tantrum...the kind where you can't let them out of your sight because they may do something to hurt themselves because they are being so irrational (but he wouldn't let me hold him)- so he is having this tantrum in the bathroom (of the hospital) and he is drooling excessively (doesn't normally do that when he cries and he is 29mo.old so drooling isn't an everyday occurrence around here).....another FPIES mom helped clear this up in that it is uncontrolled reflux, which makes a lot of sense.  He isn't necessarily crying as much as he is screaming- no tears, just screaming...then he starts to choke (not on his saliva, almost as if he is throwing up in his mouth and swallowing it down- you know when you recognize that sound) goes on for at least 30min. The plan is to take labs if he is symptomatic- so I ask (ok beg for these labs) and they are taken and found to be "off". He finally calms down and then is ok for most of the day- until he has some cookies later and then about 5hrs. after that, he has another one of these "mini" tantrums- this time he has clear mottling and his feet are purple when being held (again, classic for him when he was an infant and symptomatic). But then, he recoups from that and is fine again, he sleeps ok that night. Then we did baked zucchini the next day-Friday (so boiled and pureed and then baked into his muffin/cookies) and he doesn’t' have any symptoms to write home about. We got him home yesterday and he had his cookies again at dinner, and 3hrs. later had a poop soup diaper; but no other symptoms- sleeping good, eating ok, has a red rashy spot on his right cheek, behavior is ok,.... The plan is to continue the food trial for a full week- now at home, getting labs as needed. Until poop soup diaper, I was feeling confident that we were going to be able to work with just baked zucchini into his diet....and not even 'test' the boiled zucchini again (why make him miserable?) but now I worry that all we're doing is drawing it out and going to end up making him sicker in the long run vs. just knowing.

He's been, the past 2 weeks (since probiotic/sorry board game ingestions/symptoms) a little on the slower side for dirty diapers, only going every other day, and it being more play-dough so now to have's confusing... The labs that were off were his blood sugar and bicarb- he fit the criteria for acidosis (which he has had before with reactions); and his neutrophils (white blood cells) took a huge dive (very classic for Sam following a reaction, and why he always gets a cold after- (he's susceptible because his WBC's are down), and his hemoglobin dropped a full point (and didn't recover)- again classic patterns we’ve (I’ve learned) for Sam. I'm nervous but we need to seems to me that his body is having these dips of problems so if we helped his body (by baking it)- he could tolerate it? But....this could be his body adjusting or it could be building to a reaction....I'm trapped because we are supposed to call it a pass or fail after 7days but if he doesn't get enough of a serving- it's going to be hard to call it, but if we do too much- and his body is just adjusting we risk pushing his limits versus teaching his body to tolerate the food (which obviously is the goal).
My theory is: what we are seeing now (and the labs that correspond with his symptoms), but then we see him re-coop. I am curious if this is his body training for oral tolerance or if it is his body teaching to react? So, do we push it so we know and not continue to make him more chronically ill; or do we take it slower so we continue to teach his body oral tolerance?

Wednesday, November 23, 2011

"What's That?"

At Little Man's 2yr.well child visit with the pediatrician, our biggest concern- outside of his FPIES (but that is managed by his GI)- was his speech.   He clearly had good processing but his speech was somewhat behind where his brothers were at that age, but still within the "window" of ok for his age.   Give it 4-6mo. is the recommendation of our pediatrician, we would wait and see.   Over the months he has, in little bits, added new words to his vocabulary.    Today, as we read an ABC book, he pointed to the pictures, "what's that?" he asks over and over;  and I would answer...a ball, a cup, a fork, a gorilla, a horse, ice, stars,....object by object, word by word, he repeated every one.  What's more, he went back through and 'read' the book himself- saying the words we had just read.   His vocabulary is finally really starting to take off in the way I expected it to and hoped it would months ago. 
Here he is reading his Micky Mouse "toodles" book, which he loves (we don't even have cable and he's rarely seen the show but enough to make an impact on him I guess!) He loves this seek-and-find book.   He's growing up so fast! 

FPIES is ugly, but we remain thankful.

FPIES is ugly...but there is so much to be thankful for!   FPIES has shown us how beautiful people are, how caring and empathetic, and helpful.  

Recently, we had a fundraiser to raise awareness, a month later and I am still overwhelmed at the response we received.   Money raised, in Little Man's name, for The FPIES Foundation, to help future families in more ways than one.    To enable The FPIES Foundation to provide assistance and programs, and educational materials (such as a flyer we distributed at a recent Food Allergy Fair, more on that later) to further raise awareness and support for FPIES families following in the same footsteps as we have on this journey.  A treasure beyond measure, the gift that will keep giving. 

Kindness, empathy, thoughts and prayers for strength and healing....all among the richest gifts we have received from family, friends, neighbors, acquaintances, even complete strangers.    God has mysterious ways of showing us how beautiful His world remains- because of the very people who have shared our journey, who have provided us with this support.

God never promised there wouldn't be trials and troubles in this world, He only promised he'd help us through it.   This diagnosis can be ugly, but God is giving us the graces to get through it- the strong instincts to know what to do next, the drive to do it, the graces to perservere through adversity, and the support from others.  Assurances we are on the path He intends for us and Faith that there is something at the end of this journey. 

Tuesday, November 22, 2011

FPIES Fundraiser at The Pizza Ranch!!

I am always looking for ways to increase awareness on FPIES.  Not that everyone all over needs to know all the nitty-gritty details and in and outs of the allergy, or should ever know the ins and outs and all around of it.   I don't ever expect others to cater to my son's allergy or change the world because of it; or give us any degree of sympathy (in fact I'd prefer if sympathy was left for other diagnosis).   What I do look for is raising awareness of the diagnosis itself, so that if someone were to hear of intolerance's of this nature in an infant, they would have a path to look down when ruling in or out a diagnosis for treatment plan.  I also look to raise awareness in the community we live in, not so people would cater or be sympathetic, but that people can have empathy to the needs of caring for a child with a chronic illness that involves food- many foods.

This past spring, my sister held a benefit for our little man.  It was extremely successful in that it raised a lot of awareness in our home town community, 3 local newspapers did articles, people wrote to us from reading those articles, and of course people attended the benefit to meet our little man and ask their questions and learn about what FPIES means to him, and our family.   At that same time, in the spirit of raising awareness, I also booked "Tip Night" at a local Pizza Ranch to raise awareness in the community we live in now.  Unfortunately, we had to reschedule that as Little Man's needs were too high at that time, so we postponed it for this fall.   It became scheduled for Oct.24th.   Of course little man's needs have not slowed down much, but I decided we needed to go ahead with it anyway.  We were blessed to have friends that were able to help- help advertise it and help work at it; because little man was actually in the hospital the week prior to the fundraiser!

The FPIES Foundation helped in making an announcement flyer for it, that a neighborly friend helped hang up around town.

It was a great event.  Pizza Ranch has a program built in for non-profit fundraiser events such as this.   It is called "Tip Night".  You bring the waiters, you earn the tips.  

I set up an informative table including a video tribute of Little Man's FPIES slideshow, some other informative FPIES print outs, and an outline description of FPIES I wrote. Of course, displayed was little man's safe foods.  I also decorated the tables with little FPIES tidbits.  It was a successful night!! 

Monday, November 21, 2011

Zucchini trial....clear as mud

Well, there is a reason why I named my blog this: Mudpies.  Well, a few reasons actually.  I'm surrounded by boys and now I'm surrounded by FPIES.    FPIES, FPIES, FPIES.   Everything seems to revolve around FPIES.  I wish it didn't but with Little Man's illness being so complex and chronic, it just is.    We are really hoping and quite literally praying we can figure out a tiny menu, with the help of our team here guiding us through his reactions and symptoms of intolerances.    

We've chosen to start that with zucchini.   Well, I've chosen.  I chose zucchini because we have never tried it before, he is not sensitized to it, and it's been over 18mo. since he's even had anything in the squash family.  It is a good source of Vit.C which he needs more of in his diet.  It is easy to digest and easy to bake in to foods (since his favorite food right now is his "cookie").   It is low in sugar and lower in fiber (skinned and seeded), it shouldn't cause any symptoms much less an FPIES reaction.   But if it should, it's only zucchini and not available all year (although I do have a freezer stash).   It WAS in season when we were going to orginally start these food trials so it was perfect (food trials were delayed a month due to a PICC line infection and treatment). 

So, here we are at zucchini.   Today is Day 6 and today went well; but we're holding our breath because we've been cycling through some concerning symptoms.  My hope and prayer right now is that these symptoms are merely his body demonstrating that it still struggles to find Oral Tolerance and to caution us to continue to be careful in the foods we chose next and how we prepare those foods, and how we help his body accept those foods. 

So, how has the trial been going?  What symptoms are concerning?

11-16 Zucchini Trial at 11:15am= 1 small slice and ½ a “muffin” with zucchini in it.  Fussy before nap, itchy ears, red cheeks, smelly gas, refusing bottle before nap. Woke up from nap pale but pinked up, and played well all afternoon/evening; very tired looking, drinking sips of his peach‘juice’. Slept ok through the night, some tossing and turning. BM diaper is "normal”- has been having them every other day, thicker.

11-17: Zucchini at 9:30am- boiled/purred- 1tsp. 12:30pm had bites of a cookie made with pureed zucchini. Got D10 for low blood sugar at 10:30am.  Refusing bottle a lot today, looks more pale this morning but happy throughout early morning, had some “blah” and fussy times. Found low blood sugar results from early AM lab draw,after getting unhooked from TPN; took 10:30, then had lab draw right after finished bottle. 1:30pm- irrational tantrum, drooling, choking, screaming (not crying-screaming),noted mottling (but was playing with cold water). Settled down and had a short nap, woke up crabby; better after bottle but still “blah”, evening tantrum noted to have mottling and feet turned purple when being held (cleared when put down), rash on right cheek, looks so tired, smelly gas. Decreased oral intakes, and decreased wet diapers (didn’t wet through the diaper last night as typically does). No BM diaper today.
Concerned that boiled zucchini caused the “episode” but could even have been from the D10 he got for low blood sugar. Slept well overnight.
11-18:  Zucchini at 5:30pm baked in cookies-ate 3, got approx. 1tsp zucchini.   Looks pale, purple around lips, lips look paler; but otherwise in good mood this morning. Started asking for his bottle again, and increasing intake mid-morning, took a good nap- woke up crabby but calmed down easily, played nicely all day. Willingly ate his “cookies” at 5:30pm- enjoyed them. 6:30pm noted rash on cheek flared up again, and smelly gas otherwise good mood. BM diaper had mucus surrounding thicker stool (playdough consistency).
Slept well overnight, but had to be near daddy. Woke up twice but didn’t eat.

11-19: Nibble of zucchini cookies at dinner 6pm. Fasting for AM labs to check blood sugar after TPN cycling, tantrums while waiting for 10am (fasting) lab draw! Ate well after that and played well- dismissed from hospital and happy to be home, ate “cookies” for dinner. Rash on cheek flared up after, otherwise no other symptoms- good mood and played well. BM at 9pm- “poop soup” (took pic)- watery/soaked in surrounded by thick pieces. Slept well through night. Eating better at home.

11-20: 9am bites of cookie with baked zucchini (same batch from last night). Asking for bottles, eating better today. Increasingly whiney all morning but playing. Rash on cheek flared again, itchy ears.

11-21:  9am BM diaper, blow out/liquid.   10:30am 1tsp of skinned/seeded/boiled/pureed zucchini- doesn't like it.   Fussy off and on today as yesterday, but slept well and increasingly better mood throughout the day, increased energy.   

I'm optimistic....


You know that feeling when things are happening faster than you can process? Or when everything around you is all about food (holidays, party’s,…) and your little one can have none? Or when your child’s intolerances continue to stump physicians and you simply just want to feed him and forget this world created by FPIES?

I’ve been in an FPIES funk the past few days. It isn’t the reason I’ve been unable to keep up with my blog, that started with just enjoying our baseline (shhh.don’t tell FPIES), which was kept busy with the work on The FPIES Foundation, but then led to anxiety about upcoming food trials and landed us square in getting an upper endoscopy last week and proceeding to the zucchini trial we are in now.

The upper endoscopy showed mild reddened area’s that are familiar to some past scopes. The plan was for a food trial to begin- zucchini; but the biopsy results back the day we started the food trial showed villi blunting, again. Do we proceed with the food trial? What is the villi blunting from? Is this his normal? Is it related to FPIES or something else? Could he have small bowel bacterial overgrowth, and is this why he did so well on the antibiotics when he had the line infection a few weeks ago? Is every reaction causing villi blunting? Was this from the probiotic? And why? Those ingredients were “safe” for so many months – why would it now cause this? Or was it from the Sorry board game ingestion? We certainly saw symptoms from that. Or, is it from something else in his diet? In his world? A cross contamination from the soap I use to wash his bottles? The exposed sheetrock downstairs (gypsum is made from corn)? The potential cross contamination in the Bob’s Red Mill products I use (they process corn meal on the same lines, anything is possible)? An intolerance to the arrowroot starch in his daily bottles, feeding his small bowel bacterial overgrowth? If this is happening this frequently- without glaring outward signs, then no wonder we’re struggling with passing a food, and no wonder he has persistent and severe anemia. If the reactions aren’t causing just inflammation but causing villi blunting- it would be more severe, and take longer to heal…..and no wonder we are always cycling. It certainly makes sense for why.

Still so much to process, still so much as we continue through a food trial- zucchini….

Saturday, November 12, 2011

Sorry (inedible objects become edible)

Ironic that he sucked on THAT board game. A dear friend said he should’ve chosen Candyland- might’ve tasted better. Sorry that he had to experience symptoms and it wasn’t even a food! Sorry was right, sorry that it caused days of symptoms- thankful though that there was no vomit. It could’ve been leftover symptoms from the probiotic reaction as well. Pale looking, tired looking, difficulty sleeping, pain in his sleep, decreased appetite, fussiness throughout the day, tantrums off and on, mucous-y diapers, definitely off from where we had been just a week before- before probiotics. Maybe it was the probiotics that was causing the weird PICA-like issues as well (that caused him to want to eat the board game) because an iron level check revealed his iron stores in an ok range for him.

I worried if these recent reactions were going to compromise the scope findings. The Sorry board game was Nov.5th, the scope was scheduled for the week of the 7th. We have already lost a month, from the line infection; and he isn’t going to be able to have the PICC line for forever so we need to keep moving forward. We need to utilize the line to draw labs and watch what is happening in his body as we try to get his body to accept a food. Is it something we can change? Is it something we can help his body with? Are the symptoms related to his FPIES or something else? So, we can’t delay any longer but he is still having some symptoms. Ironically, our GI couldn’t do the scope the week that we had planned and put it off a few days. We would do it on Monday the 14th instead; and then be admitted for the food trial on the 16th for 3days. We decided to go with this plan, as we have been waiting months to get to this point.

Sunday, November 6, 2011

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.

Thursday, November 3, 2011

Prayer Blanket

Recently, we received a package in the mail.  In the package, was a special gift from a hometown church parish: St.Joseph's Prayer Angels, a beautiful prayer blanket.   What an amazing gift, a reminder of how much Little Man is held up in prayer, a reminder of the strength that is given to us in grace's as we need them.  A prayer and support wrapped up in a prayer blanket hug. 

Prayer Blankets are sewn with love and prayers for those who receive the blanket. This prayer blanket is a symbol of our faith sharing community “covering with prayer the individual who receives it”.

The Prayer Angels of St.Joseph parishes, commit to prayer as they fulfill their part in construction of the blanket. The process involves shopping for material, washing, coordinating fabric, cutting, sewing, ironing and tagging. After the blankets are complete, they are placed on the altar at a Healing Mass and blessed by the priest. Those who are to receive the blanket are held in prayer. These beautiful acts truly transform the blanket into a “PRAYER BLANKET” whose very threads become interwoven with pleas for healing on behalf of the recipient.

Each blanket bears a tag that reads ‘You are covered in Prayer.” This blanket has been prayed over and blessed at St. Joseph Healing Mass. Be Not Afraid, for the Lord said, “I am with you always, until the end of age”. (Matthew 28:20).

This gift of prayer originated at the MD Anderson Hospital in Houston, TX where the chaplain who gave the blankets to the sick found that they so uplifted the patients that she began to deliver them on a regular basis. Blankets were given to hospital patients, the sick at home, the Veteran’s Hospital and cancer support groups. Missionaries presented them to the orphaned, very elderly, and those who were sick in Guatemala and Volograd Russia. The gift was received as another wonderful way that people are doing God’s work.

The Prayer Blanket brings comfort to the suffering and peace to the fearful. When one sees and touches these blankets, they know they are not alone – that they are covered in prayer and there are those who do care about them.

God has used this beautiful ministry not only to touch the lives of countless people who have received the Prayer Blankets while they are going through extremely difficult times in their lives, but the lives of those involved in the ministry as well. We are blessed to have so many people who give abundantly of their time, talents, and treasures, making Prayer Blankets possible.

Wednesday, November 2, 2011

Catch up growth!

It's been awhile since we've been to the pediatrician's office, 2 months actually.   Of course we've been to the hospital since then, and we have home health nurse visits 2x/week; but all the same- it's been kinda nice not having to go to the clinic for appointments.   So, why did I go this morning?    A weight check.  We get weights done at the hospital but they are too many variables for a weight for MY records....different scales, clothes on, clothes off, morning, afternoon, full of IV fluids.   Of course all of this is mere ounces difference but when you have dipped down to the <3% for weight, every ounce counts. 

September 1 Little Man was 11.1kg, which is 24#.   Today, 2 months later, with 8 weeks on TPN, he is 12.76kg, which is 28#!  He has gained 4# in 8 weeks! This weight will help us see how he is doing on food trials as well; although he will have the "back up" of TPN during the food trials to keep him from losing - we may still get indicators of his inflammation as calories are not readily absorbed from the gut, and his body needs extra calories if his villi (small intestine walls) get damaged.   His growth chart is full of these types of losses.  His growth curve is a picture of a bouncing ball.   He would gain, and then fail a food and either lose or not have any gains for weeks.   Just in September, when he was reacting to the Vit.C supplement; in a week and before we started TPN he lost 1/2kg which is a full pound in just one week! (so technically he has gained 5# in 8 weeks on TPN- having to regain a lost pound!).  

He needed this weight gain, for catch up growth.  He is now in the 35th% for his weight.   I didn't think to get a height check on him too, and should have because looking at his growth chart, I am reminded that his last height check put him in <3% on the chart.   He is much shorter than his brothers were at this age (judging by their growth charts on the wall), but he is proportionate for him.  He is finally out of 24mo. clothes, and even moving up a size in diapers.   From failure to thrive, grow and gain weight, to catch up growth.   My heart smiles. 

Tuesday, November 1, 2011

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

Sunday, October 23, 2011

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?

Saturday, October 15, 2011

PICC line bacteria identified.

Over the next days, Little Man is doing really well, especially considering how rough things got to land us in the PICU. Everyone is pleased with how well his body is coping, maybe that is the advantage of a chronic illness- his body has developed many coping mechanisms and he is the healthiest sick kid we know! We were dismissed from the PICU after 24hrs. of being stable.

They have identified the bacteria, normal gut bacteria: pantoea agglomerans (previously known generally as enterobacter). This is a gut flora bacteria, belongs in the gut- not in the blood stream. It has set up home in one of the lumen’s of his PICC line. The antibiotics have eradicated it from his system, but it remains a threat in the line. Only further time, waiting for culture tests, will tell if we will be able to save the line (although looks optimistic that we will). We do cultures every day and as soon as those cultures do not grow any bacteria, they will be able to send us home on IV antibiotics.

The other complication is that his hemoglobin is dropping again, now down to 7 (normal is 11, we have to consider transfusion at 7 and if he gets any lower- we will be facing a transfusion). They haven't given him any IV iron this week yet but honestly the last 3-4 IV irons have not done ANYTHING to raise his hemoglobin....this still remains a mystery to me and seems there surely must be something else going on with how his body produces hemoglobin and how the reactions affect that.

Another kink is that the next day, he threw up this morning. Daddy (who takes the overnight shift) said he had a great night- slept through the night, and when waking up - before he had anything to eat, he threw up. Could be the antibiotics messing with his gut flora causing it; could be that he painted the day before (a dot marker type painting) and he painted his hands and then later licked his hand.....12hrs.later he threw up- classic for him (and has happened before); we had to just wait and see.

He never did have any further throwing up or tummy pain; so we concluded it was the paint.  Bizarre but FPIES.  He continues to do well, and we are dismissed from the hospital to continue IV antibiotics at home; having identified the bug and the antibiotic to treat it.   We are happy to go home.

Wednesday, October 12, 2011

PICU admission

Severe FPIES reactions resulting in sepsis like shock is experienced by ~20% of kids with FPIES. Little man has, thankfully, not experienced full shock as many other kids I know have. His reactions are much more the sepsis, and his body comes out of it. That is what I watched during his episode the night before- one minute he was slipping into shock and the next his body was turning it around. Except this sepsis wasn’t due to an FPIES protein trigger…
He had stabilized after the episode I was there for, and they finished his vancomyocin antibiotic; we then did a quick site care/dressing change (due once a week) and then I headed home- trading shifts with his daddy. The vanco takes that finished up and they started the TPN. Within minutes monitors were going off, and he was decompensating quickly- this time worse than the previous one. I'm still fuzzy on the details (and maybe that is better) but they quickly transferred him to the ICU and got him stabilized. Little man’s daddy called me ~11:30pm to let me know he had been transferred and was now stable. They would be getting chest and abd.xray's to be sure nothing else isn't creeping in. He had a few more rough hours, he was stable from the shock episode but his monitors kept going off- he was in pain…from being full of stool! Gave us a little insight into how painful it is for him! They were able to give him a suppository that “took” within minutes and he was able to relax.

We stayed in the PICU for the rest of the day, with close monitoring- he continued to have blood pressure problems and a low grade fever throughout the day but by evening, he was dramatically improved.

Little Man has a double lumen PICC line- which means there are two lines that converge to the catheter that goes into his vein. One of the lines has always been "sticky", we suspect this line is where the infection set hold. Still unclear of how he got the infection but infections are the highest risk with PICC lines. We do feel we caught it early though; as early as we could have. The infectious disease doctors are optimistic that we will be able to preserve the line, that the organism that is infecting it is an easier to treat one and that the antibiotics we've been giving him are working.
Still not sure of the plan from here, but of course that remains on my mind- how long we'll have to wait for the food trials, how much the antibiotics are messing up his system, how long he will be on antibiotics, how long he will be in the hospital, if having an infection means we have to stay in the hospital or can we continue his TPN at home?

Monday, October 10, 2011

Fever out of no where?

I worked this weekend. I came home and made dinner. Nothing was out of the ordinary, Little man's daddy relayed that he had had a good day. After dinner, it was already late and we got the boys ready for bed; which includes hooking him up to his TPN. He was laying on the bed next to me, and I noticed some wheezing in his breathing. I thought maybe I was hearing things and decided to just listen quietly for more. His breathing remained a little erratic but he soon fell asleep. A few moments later, he was crying in his sleep and I reach over to him and can tell he is feverish. I call his daddy in to help me assess because something just isn't right. His daddy picks him up to comfort him more as he was waking up. They got into the kitchen and he started to vomit. First instinct was, what did he get today? But then went right back to the breathing and the fever and that although it was a lot of vomit- it was all his formula (fresh vs. the watery bile he would normally throw up with an FPIES reaction). We get him cleaned up and take his temperature, 101.7. I give him some of his compounded tylenol and we take him to watch a movie to settle him down. He goes right back to sleep and I call the home health nurse....still not sure what is really going on.

Little Man is rarely ever sick, besides his FPIES, but could this be a viral illness? Should we be calling his doctors? Taking him to th ER? The home health nurse confirms that the degree of his fever is concerning and that he is still shivering/shaking and burning up- she said to give him a few more minutes and check his fever again, if it was still elevated- to take him in to the ER. I checked and it was 103.7. I don't know what is going on, but I do know sepsis is a number one concern with a PICC line and I have no desire to wait around to see if he is going to get better or worse at home....I head to the ER.

Once at the ER, we are taken back immediately and the assessments begin immediately. His temp is down to 99, we assume the tylenol has kicked in and remain concerned over his symptoms due to his PICC line so blood tests are ordered and an IV is started right away as well as IV antibiotics (thankfully via his PICC). The risk of sepsis is high and there is no time to waste. The blood will need to be cultured to see if it grows any bacteria, but in the meantime, he will be treated for sepsis.

We are admitted for further observation while we wait for more tests. Little did we realize we are also admitted for further tests. We were up most of the night- getting blood draws (had to have one not from his line), they also got a urine sample (NOT fun!) to check for UTI as well. We finally got to sleep around 4am; and were up by 6:30am. In there he was also started on another antibiotic- they were doing two kinds to cover as many "bugs" as potentially could be an infection in his line. Unfortunately (of course), little man is one of a rare few that reacts to Vanco with something called "red man's syndrome". I swear he looked like an umpa loompa! He was getting so red and SO itchy. The RN promptly stopped the infusion of Vancomyocin and the redness quickly disappeared. We waited for IV benedryl to continue giving this antibiotic. He tolerated it better after that but still had some redness and itching.

The next morning, he was doing well and even though we didn't have answers yet, we were optimistic maybe we were "just" dealing with the GI bug. That afternoon he was getting some IV antibiotics so we watched a movie while he stayed hooked up (the IV vancomyocin was infusing for an hour every 6hrs.). Once that was done, we unhooked and went to play- he was running and playing for a little over an hour. Then he was ready to sit down and relax with a bottle.  I was finishing my dinner and I noticed he was started to look really tired, and sunken eyes. He leaned over and started moaning- as if he was achy. He then started shaking, the chills consuming his body. I called for the nurse so I could get her to take his temp before I gave him some ibuprofen- he was clearly uncomfortable.

Before the nurse could come in, the Resident was coming to tell me that the scope we had previously scheduled, had been postponed.  She quickly noticed his poor tone; falling asleep in my lap....she tried to get him to open his eyes and he couldn't even do that. We took a quick temp - he was clammy, his temp matched as low. Other nurses were coming in to help and getting blood pressures and oxygen saturation's, as well as heart rate and respiratory rates. He was all over the board. He is now having full body bright purple mottling, and his hands and feet are BLUE. His O2 was 84! The next temperature reading was 39degrees C, now he's burning up- from cold and clammy to burning up in 5minutes! I held him close and comforted him....I just wasn't sure how bad this was going to get. But that was it, his body started to relax a bit more, his breathing evened out better and his blood pressure stabilized. We were able to give him some ibuprofen and hook him back up to his IV fluids as well as antibiotics. The senior resident came in to confirm with this reaction and the cultures that were growing; we're dealing with sepsis.

Is this as bad as it will get? Will he have more of these episodes? He is fighting his way through this....