Birthday Boy!!

Last weekend we celebrated Little man's 2nd birthday.  It was a Curious George inspired day!  All fun, some curiosity and lots of George!  Around here, that curious little monkey is a favorite!  

It was a small, family only birthday.  A quiet day where Little Man was the center of attention- with nothing to do with FPIES!  Unless you count his half food/half non-food birthday cake.   The "base" is a box (with a present in it) wrapped in colorful tissue paper.  The big cupcake with the 2 candle is a styrofoam cupcake I used on his cake last year.   The mini "cupcakes" are food!  His "safe" Merry Millet Muffins, with a new addition of frosting- make from coconut palm sugar and palm shortening.   We have not full trialed palm yet but he has palm oil in his toothpaste and probiotic and we've been working with small amounts of coconut.   We are not sure his body is ready for large quantities yet and we're continuing to take it slowly but it is ok enough for the cupcakes.  I suspected he wouldn't dig into them anyway- just a safe resting place for the candle that he enjoyed "licking" tastes of!   He LOVES blowing out candles and the "Happy Birthday" song!   In fact, he added "birthday" to his list of words that morning.   As I was downloading the picture this morning, he looked at it and said "birthday!"...he remembers his fun day!

"I am SO Two!"

Reads his t-shirt, handed down from his oldest brother, worn by each with such true meaning.  There is something about being two!

Little man had his 2nd birthday recently, but that is not what this post is about- that will come soon though (as I'm still working on organizing/downloading the pictures...hey, we've been a bit busy!). 

Just a week after his birthday, and we are finding ourselves sinking into anemia traps again.  His hemoglobin seems to have spiraled down quickly.  The lab draw reveals a Hemoglobin of 6.1 and Ferritin stores are quite low again as well.  There isn't enough iron being absorbed to make iron rich hemoglobin with.  All that we know right now is that it is a combination effect of:
1). colitis flares with food trials as evidenced by blood in diapers for 1-2days following small ingestion's of foods, or triggers (sucrose in IV iron 6 weeks ago) and unknown days of microscopic blood not visible. 
2).  Not enough Vit.C to absorb the plant based source of iron (despite his hemp supplying almost 3x what his body needs)
3).  Missing micronutrients (B vitamins) to synthesize iron.
4). Acute inflammation following reactions
4). Gut flora involvement??

Peaches supply Vit.C but he doesn't eat them consistently enough to get enough of it from them.   We just started B vitamins and it looks as if he is tolerating them well (we are 1 week in!); so once we restore his iron levels - will the B vitamin supplementation to his vegetarian diet be enough?   We can only hope. 

But right now, the question remained if he needed a blood transfusion or could proceed to straight IV iron infusion.  And for that, he needs to be evaluated.   We say good-bye to Daddy....which he is not happy about and head to the Pediatric Infusion Therapy Center and await the Physician's Assistant to come and evaluate.  If his heart rate is too slow, or too rapid- they will need to do a blood transfusion before they do iron infusion.  

It takes 10-15minutes to get from our house to the hospital parking....he's been screaming the whole way- more like yelling.  As if he is saying "I know this drill and I do NOT like it....you don't take me with when daddy is home unless it's to the doctor, take me back home, take me back to my daddy".   He kept trying to wipe his tears, they were just an annoyance getting in the way and he was trying to tell me something.    There was a point, as we pulled into the parking garage that I just wanted to turn around and go home.  What would be the point in his if he is going to be screaming like this?  But, no- he needs this, he needs to be evaluated and he needs treatment.   Wasn't he just so tired a few hours ago that I was carrying him around the house?  Where is the energy to have this tantrum coming from? 

He continues to carry on, stopping for a split second to pout his lip as we enter the parking garage.  I breath a sigh of relief- maybe he's resigned and we can walk into the hospital without them thinking I am hurting my child!?   Nope, he takes a breath and begins again.   We go up to the infusion center with little breaks from the objections.    The nurse tries to take vitals, which only makes him more upset and clearly accurate assessment of his vitals is not going to be possible in this state.   The physician assistant comes in to exam him and the tantrum escalates....does he even remember what his tantrum is about?  No, but he knows exactly where we are at.  

I have witnessed tantrums to this caliber before but not from him.   He is adamant that no one is coming near him, and he barely will let me hang on to him- he is not happy with me either.   I called his daddy and said "you've got to come, he won't calm down, he needs you".   I knew he would be happy enough to see his daddy that he would at least calm down and catch a breath so we could better assess things.   In the meantime, the PA and I discuss his symptoms and observe the energy it is taking for him to have this tantrum.  It is decided that we can hold off on a blood transfusion and proceed with the IV iron.   But it is already 3pm in the afternoon, the IV dextran takes 6hrs. to infuse and the Infusion Center closes at 4pm. 

They ordered IV Iron Sucrose.   The one he got SO-SO sick off of, the one no one understands why he reacts to....a corn sugar injected into his veins where T cells have to encounter it at some point?  I don't know why it is hard to understand but I do know what we see happen to our little man.   I wait until his daddy arrives a few minutes later and ask if he would want Little Man to receive the IV iron sucrose.   I barely finished my sentence, and he says "NO!....absolutely no way is he getting IV iron sucrose, we will not put him through that again- he was so sick".     The decision is noted and understood, we will return in the morning for the 6hr. IV iron dextran infusion.  

We all go home exhausted.

Tired of Anemia

....tired FROM anemia.   I thought it was the heat., then maybe it was daddy's extra shifts at work that was making him cranky.   But then his sleep started to get more disturbed, and his appetite was declining for everything but wood.   And then he didn't have the energy to walk up the stairs, or play outside with his brothers, and his lips were the color of his pale cheeks, it seemed to spiral quickly...or the days smashed into another, or I didn't monitor my journal close enough to see the building symptoms that were becoming more clear familiarity of anemia.

We had discussed a lab check with the pediatrician at our 2yr.well child just a few weeks ago; but we decided to hold off- unless/until we saw symptoms.  Well, with all of these symptoms, it would have to be done sooner than our planned 6week follow up.   A lab draw right away on Friday morning revealed a Hemoglobin of 6.1 (when normal is 11-14 for this age).   Sigh, tears, sigh....phone calls and messages to his doctors (our clinic has an online patient portal for checking labs and sending messages, it works well for the needs of chronic illness) and it is decided he needs to be evaluated right away, to check in at the Pediatric infusion center where he will receive appropriate treatment.   A blood transfusion may be necessary if he has a too low, or too high heart rate. 

Little man has already had a long morning, an IV stick for a lab draw....correction, 2 IV sticks for a lab draw- he has tricky veins.   We've learned enough about his veins and draws that if they stick him and can't get blood immediately, to just pull out and try another site.   Some lab techs do not appreciate being told how to do their job, because that is what they are doing- their job.   But it is my job to remind them that this is a little boy, and he also happens to be a little boy who has to endure many IV sticks - we do not need to make them more traumatizing then it needs to be.   We have stood by and watched them dig and poke and prod around under his skin looking for that vein that "was just right there" enough to know that once it jumps- there is no finding it.  Get out, find a different vein.   So, we switch arms, and positions and this vein comes right away.  They get the blood they need while Little Man screams in objection.  He doesn't like to be distracted, he doesn't like to be told "it's ok"- he just wants it done and he does not take his eyes off the needle until it is done.     They bandage him up and he sits up.  Tears done.  He is such a trooper.  He looks over my shoulder at the tackle box that carries the prizes, "quack, quack?" he questions, he knows he is due for another rubber duckie.  He picks out what must be his 30th duckie by now, and we head out.  He stops me half way out the door because we passed by the stickers.   I try to tell him he already got a duckie, he doesn't need a sticker.   He quickly informs me that he does need a sticker, he picks out a puppy one and has to have it stuck on his shirt right away  - it is his badge of courage, and he wears it proud.   "Bye?" he says now.  And we go home to wait for the test results and decisions on treatment....

My Journals...

In the beginning, I started keeping a journal of foods eaten (including mine when I was nursing) and symptoms noticed, I even had a "pain scale" on some of my first journals as we were often trying to convince doctors that yes, our little man was in a great deal of pain and that no, it wasn't "normal", or part of his temperment....also because he seemed to have a level of low pain 24/7, it helped to see what times of day/hours from ingestion of something that that escalated.  

Journals have been incredibly helpful.   I started in March of 2010 and continue every single day since- even when he was in the hospital.   It becomes tedious work because I was transferring sloppy, crazy, quickly written information to legible printed information in a table format in a word program.   The work is tedious but it also very reflective- which is incredibly helpful for seeing larger patterns to things, allowing me to note something one day without worrying about it until the picture is filled in- because of his many delayed reactions. 

Now,  my journals consist of 2 parts.  One template that I print blank, hand write in and file after I summerize the information by the day.  It is the daily summerization that I still put into a table in a word document, and the reflection is still helping. 

For a few examples of my jouranls, take a peek in my File Cabinet.

Today, I logged a few days worth (almost 2 weeks!)- I don't usually get so behind but with the start of summer and a new schedule in our household...well, you know the drill. Anyway....I realize I wrote down on the 2nd day of Elk that he had a bloody diaper with streaks of mucus. I noted it, I may have thought it was left over from blueberries, I may have been waiting to see if it would happen again (as I noted the next day that the diaper was free of visible blood or mucus).   I've been trying to analyze the symptoms following Elk to decide if it is something we should keep trying to find ways to feed to him. With these logs, and the reflection I am given on those days and since then, I realize he is just not ready....banana= blood in diaper, blueberry = blood in diaper, Elk  = blood in diaper.  I feel his body is just not quite ready for this diet yet....that he still has stages of healing that do not include this kind of trial right now.  So what now? 

Now, we turn back to his "safe" diet- his formula.  I am continuing to work through the recipe in that- tiny, tiny changes- increasing the protein powder, increasing the fat, changing the arrowroot starch amounts, getting the most of the probiotic I put in it (and get cultured formula!).  And, look once again, into how to fill in his nutrients without foods.   A B Vitamin Complex I had purchased a few weeks back is standing out in the cupboard.  I had put it aside to do the Elk trial instead.   The last vitamin trial we did did not go very well, so we have been leary of doing vitamins when we would rather do food.   But if food is too difficult on his system still, if his gut isn't ready, if we need to keep working through probiotics having their effects on his gut, we need to keep exploring how to fill in these essential nutrients.

With the addition of B vitamins, his formula will be much closer to complete.   We still need some micronutrients like copper and magnense.   We are working on finding non corn fed chickens for EGGS that would fill in those final micronutrients.   With these nutrients being provided, the gut flora will not have to synthesize so much of them...and maybe that is our piece to the next step- to re-assign the gut flora to it's job of keeping the gut healthy and keeping the "bad" gut bugs at bay, instead of working overtime in so many area's to keep his other systems growing and thriving.   We have already witnessed many positive changes from the addition of probiotics to assisting the gut flora in his health.  

We will continue B Vitamin trial, which is looking well 3 days in, and then we will continue strengthening his probiotic dosage and building his gut flora, restoring his "leaky" gut.   And then we will look to introduce foods that will support all of this building and growth.    Oh, and in between there- we will enjoy our Little Man, and enjoy summer with our boys!

Gratitude.....

You find out who your friends are....

The support started early, the irony of a social networking sight...yes, I'm talking Facebook. 

Who would have thought Facebook would be such a support arm for me for such an isolating diagnosis?   Not me.   2am darkness, isolation, can anybody hear my cries for my baby?  The doctors were not hearing.   Friends and family were.  The support from the beginning has been the humbling experience of a lifetime for me, I can't imagine forgetting what it felt like to know everyone who knew me, who heard my words, trusted them and trusted me....that if I was crying out for help- I meant it, I needed it.   Heard in my "voice", my plea for strength, and wisdom, and prayers...all of which I received- family and friends not all living near but always close.   A gift of community, a gift of family, a gift of friendship.  A darkness given light.   I wish I had adequate words to describe how much this has meant to me. 

Recently, my sister gave our Little Man a Benefit (where do I even begin to show gratitude to my sisters for helping me in the trenches....for helping our family dig out of the trenches -- or at least get good breaks from them!).   The financial trench is a deep and wide one, and although we don't like to think about the money when it comes to health....our little boy's health is priceless.   Finding the right doctor, the right foods, being in the hospital, paying for his formula, making our own formula with special ordered ingredients, many months of caring for a constantly crying baby - while trying to meet the needs of 3 growing boys....all take their toll on digging that trench further and wider.  Again, a cry out- this time given in support and financial assistance as well as fund raising for awareness and answers for this little known, yet so severe, allergy.  Where do you find words to give thanks?  I pray all that have helped us, helped us dig out of yet another trench this diagnosis has put us in, not just knows but feels our gratitude.  

No one has ever disappointed us, in fact many have surprised us....praying just when we need the strength and graces from Above, offering a hand when we need it most, providing a shoulder when the load was so heavy....there has always been someone there.  God has watched out for our family, given us the graces to get through each day- the good and the long.  

We are so blessed....

Blessings

There aren't many words that need to accompany these lyrics....it's as if they were written for me, maybe they were.  God gives us gifts and graces every moment of everyday to get through our hard times.   The graces are there, all we have to do is ask.   But I believe they were written for many, and wanted to pass them along, as they were passed along to me (twice now!).  It is very fitting of our journey, and how my Faith sustains me through it....You can hear this beautiful song by clicking here:  Blessing by Laura Story.

Blessing by Laura Story

We pray for blessings

We pray for peace

Comfort for family, protection while we sleep

We pray for healing, for prosperity

We pray for Your mighty hand to ease our suffering

All the while, You hear each spoken need

Yet love us way too much to give us lesser things

Cause what if Your blessings come through raindrops

What if Your healing comes through tears

What if a thousand sleepless nights

Are what it takes to know You’re near

What if trials of this life are Your mercies in disguise

We pray for wisdom

Your voice to hear

And we cry in anger when we cannot feel You near

We doubt Your goodness, we doubt Your love

As if every promise from Your Word is not enough

All the while, You hear each desperate plea

And long that we'd have faith to believe

Cause what if Your blessings come through raindrops

What if Your healing comes through tears

What if a thousand sleepless nights

Are what it takes to know You’re near

And what if trials of this life are Your mercies in disguise

When friends betray us

When darkness seems to win

We know the pain reminds this heart

That this is not, this is not our home

Cause what if Your blessings come through raindrops

What if Your healing comes through tears

And what if a thousand sleepless nights

Are what it takes to know You’re near

What if my greatest disappointments

Or the aching of this life

Is the revealing of a greater thirst this world can’t satisfy

And what if trials of this life

The rain, the storms, the hardest nights

Are Your mercies in disguise



A picture is worth a thousand words!

Which is a good thing because I made his tribute video with just 29 pictures to tell 2 years of FPIES....

I love photo's, I am a "scrapper" at heart (but oh, so way-y-y behind on my scrapbooks!).  I love to capture and record moments in pictures.  Taking a piece of that time to carry forward with us...never forgetting.   

So, why would I take pictures of my little man screaming and crying?  Because, despite me saying it was "bad"- it was hard to picture just how bad.   I was logging everything he ate, how he slept, what his diapers were like; and back in the beginning months of this- I even had a "pain scale" on these daily logs I kept for him.   Because he was in pain everyday, the only thing that changed was the degree of that pain.   I needed to add another dimension to these journals, I needed to try and do something to help someone, anyone else understand just how rough it was for him, for us.   

And so began my FPIES photo file.  Capturing pictures of eczema, of crying, of "spots" on his face, of diapers (eeks- I know but you can see microscopic blood zoomed in on the picture that you can not otherwise see when inspecting a diaper!).  I have it all in a file.    A picture tells a thousand words. 

And there are thousands of words behind this video: FPIES: Our Little Man's Journey.  29 pictures....

Picture #1: A new baby boy...our precious 4th little man, just days old. 

Picture #2: Something is not right - our eldest, not quite 9yrs.old and wanting to help so badly- picks up his crying little brother while I prepare dinner.  The picture wasn't of him being in pain, it was of his big brother helping out...and how proud I was of him for trying.  Although, that frown became a signature, he would be sitting there happily cooing and then this frown would come over his face...it was the saddest little frown.   It was my eldest who said to me around 5mo...."what happened to him mommy" that helped me to see this was not just "normal" baby crying. 

Picture #3: Trying new foods causes me pain- this picture was actually after he was off all foods- but I wasn't taking pictures as much then...but this is what he looked like more and more over the months while we tried to figure out what was going on.   This is 3 weeks into no foods, off breastmilk  and on Elecare....and the crying was escalating....

Picture #4: Eczema and rashes- in April, he had been off food for weeks, on Elecare and then switched to Neocate.  Neocate gave us a little less crying during the day, at first but still much disturbed sleep and a "colicky" baby at night, still very spitty, and this eczema popped out within hours of giving him some dye-free motrin.

Picture #5: Vomitng and agitation -this was in the evening, on nothing but Neocate....by May this crying was a growing and he had been on elemental formula for 3mo....we were growing weary of what to do to help him.  That helpless feeling...

Picture #6: Food is meant to nourish me, what could be causing this?  What would you do?? A typical day with our little man looked like this, from my perspective....every time I had to put him down to make his brothers breakfast, clean up breakfast, make lunches for school, do laundry, make lunch, do a task for his 2yr.old brother, do the dishes, clean up, make dinner, dinner dishes, bath his brothers....this is what we got....crying, screaming, hold-me-now, clinching to odd inanimate objects (here it was the kitchen towel).   We need help, this can't be healthy....

Picture #7: ...At CHOP- the nurse administering the skin prick testing to rule out IgE involvement of allergies, to help with the FPIES diagnosis and more importantly- the plan for care...including the introduction of foods safe at home with strict guidelines for symptom monitoring vs. in-hospital because of risk of anapyhlaxis. 

Picture #8: ...Diagnosed with FPIES - this is actually a few months after we came home, and switched his formula- he is becoming such a character, really starting to shine and ham!  He is wearing his token CHOP t-shirt we got while there! So cute in green!

Picture #8: Every food must be trialed, it is the only way to know if it will be safe for me - home from CHOP, we feel our first trial needs to be corn.  He is not getting any better on the elemental formula and we suspect this is why. This is a picture of him eating grits...and you can see his face/eyes are swollen looking (other foods have had this effect as well)- it is actually our 2nd day trialing.  Our first day was a 1/2tsp of whole, pureed corn.  We had full symptoms that we would recognize now as a fail but we were so new and he was still so sick daily- it was hard to see what was reaction or what was his "normal".  We called CHOP for advisement, we were advised to stop- that it was a clear fail but he had spit up twice but not violent vomiting...isn't FPIES violent vomiting- what if it was something else?   The allergist felt it was from the corn allergy but agreed if we wanted to know for 100% sure, because this would mean he would need to come off the elemental formula, we could proceed with 1/2 that dose, and change it to grits instead.   (that picture really is a thousand words!)

Picture #9:  We trial corn....and "fail"...a mere few hours later, from the last picture- he is in extreme pain.....it would be a few more hours until he violently vomited the contents of his stomach, and then some, all over our floor...and then the diarrhea started, and thick strains of mucus and then blood.....(I have those pictures too but will spare them from you unless you are his GI doctor- whom I have shared them with!)

Picture #10: Why does it hurt so much mommy? We continue to give him Neocate- only now it is hurting him every second of the day.  He begins to limit his own intakes of it- surviving on a mere half of his daily needs...We must do something different, but what....

Picture #11: Hemp milk becomes a main part of my new diet....I even posted about it here: Hemp milk arrives, this picture is a few months later when I have "perfected" his homemade formula, building it in in kitchen with 3 ingredients of his 5 safe foods: hemp, safflower oil and arrowroot starch.  This corner of my kitchen is where I spend a few hours every other day, making his formula.  

Picture #12:  And ice is a treat when it is all you can eat.....unfortunately, my building the formula did not go without it's "fails".   I initially started with tapioca starch, this resulted in metabolic acidosis and a hospital admission where doctors did not recognize, or understand the mechanisms or effects of his allergy.  He enjoys ice as we are forced to put him back on Neocate in his hemp milk, and he begins to exhibit his signs of intolerance- one being an itchy mouth. 

Picture #13: I want to sit and eat at the table, just like you...we begin to give him hemp seed cereal- just so he has a "snack" to practice eating, and join us at the table. 

Picture #14: My parents explore new foods to find me a safe diet...millet puffs!  So exciting!  A safe food we found!  He loves them!  They are tiny and a mess but worth it!

Picture #15: I am happy when we find food that does not hurt my tummy! Peaches!  Our 2nd safe food! That fall was a happier time for our family as his menu gave him a few snacks and the hemp milk healed his inflammation and is not triggering his allergy. 

Picture#16: trying new ingredients in a recipe with my safe foods....Cookies!  His first cookie- made with arrowroot and millet.  Unfortunately I mistakenly used baking powder instead of soda in one of the recipes and he had a few nibbles before I realized it.  Cream of tarter was also in this recipe and I am still unsure of it's safety.    He did enjoy eating it! Crumb by crumb...

Picture #17: ...resulted in a reaction we weren't expecting...(pallor is one of my first stages of reaction)...he was quite fussy and clingy when he got up from his nap that day; so we went outside to play- hoping it was just a "typical" behavior of a 1yr.old...he didn't play, he just sat in my arms.  We just tried to make the best of it enjoying a warm fall day with the other boys, not yet knowing how bad it would spiral things...

Picture#18: ...in and out of the hospital.....reactions, severe anemia....he continued to get ill, and his hemoglobin was falling, he was no longer responding to the iron supplements (or they were making things worse?).  His hemoglobin fell to a scary low of 5, this picture is of the blood transfusion he had to have to correct his anemia.  It was scary but he tolerated it and re cooped his hemoglobin sufficiently (back up to 10).

Picture #19: endoscopy & colonscopy procedures....this, his 3rd endoscopy....following soy reaction, found villous atrophy.  We still are not sure if the soy (stopped on day 4) caused the villous atrophy or if he was already reacting to something (his iron supplement?) and soy simply pushed him over....he was a sick little boy. 

Picture #20: IV iron, and IV Nutrition...hospital admission for TPN.  He is quite swollen by this many days into it (2weeks).  He gained a lot of weight but as noticed here- it was a lot of fluid weight.  Gut rest healed his inflammation, TPN restored his small intestine villi (where nutrients are absorbed).

Picture #21: I’m so cute on the outside no one can tell how sick I am on the inside...in the fall, before his severe anemia, before his soy challenge, before we started spiraling...on peaches, millet, and homemade hemp milk formula...a happy boy.

Picture #22:  Birthday cakes don't have to be made out of food!  A picture of us making the most of his birthday- not only were we on the road (coming back from CHOP) but he had no safe foods.  His cake was food-free!  He loved it!

Picture #23: I am happy when food isn't hurting me...A few days before our hospital admission for TPN.  He has villous atrophy, but it did not affect him like his FPIES reactions did.  Villous atrophy can be silent, and scary....We were trying to avoid the PICC line and TPN but after 2 weeks of no weight gain (and weight loss) with worsening labs, we knew we could not avoid it.  He needed the nutrition. We would be in the hospital from Dec.7-Dec.31.

Picture #24: ...a family who stands by me...Our boys.  Our precious little family....

Picture #25: I am quiet and calm....rewind to first days on Hemp milk...a beautiful, happy, calm, sweet little boy- we knew you were in there little man...

Picture #26: I am sweet and strong...a recent photo of our strong little man.  We are back to the days in the fall, after we healed him from corn fail and worked through nutrition on his hemp milk formula and passed peaches and millet, before we spiraled....

Picture #27: I have FPIES, a severe food allergy of the gut....a proud little boy with his Allergy awareness/medic alert bracelet.  We raise awareness to keep him safe, and to help other families...

Picture #28: His 1yr.photo, shortly before I started my blog....to help others follow our story.  

Picture #29: Ok, not a picture, just a slide.  I just want to share our story, our experiences, if even just one piece of information can save another family from the pain of an FPIES reaction, or chronic FPIES inflammation....

And here we are, one year later.  We have come so far from our first post.

Reflections on a year....

On a year since our trip to CHOP, since receiving FPIES diagnosis, confirmation of what we suspected, since his 1st birthday.....

I recently found a post I did on babycenter for this very trip, taken a year ago....I titled it "Anxious for our consult at CHOP", and wrote....Ok, talk about flooding the message boards but when alot of new things start surfacing or tying into my son's issues, I get a little hungry (no pun intended) for knowledge! Learning from all if you is helping SO much, thank you for listening to me! ;)
We have our appt in a week, we will travel from MN to PA for this 2nd opinion, and as my son only continues to get sicker- I am anxious to go and see what their evaluation will bring.
I know so many of you are in the same boat, and it is good to see all the support...thank you for letting me learn from you all! No doubt I'll have a few more things to add in the next week as my mind remains ON this upcoming evaluation!
If anyone has any suggestions for what to ask or say while we are there, I'd appreciate it. I got us an appointment with a Dietitian that day as well, we gave a great Dietitian here but wanted to get insights from them to bring back here too. We are just so excited at the possibility of getting some answers and recognition for what our son goes through on a daily basis.

Wow?!  We have come SO far in one year!!  One year to diagnosis, another year to healing.     We went to CHOP for the diagnosis and with the consult of Dr.Pawlowski we were able to get a handle, and control of his allergy triggers....but not after the damage to his intestines had already been done.   Which brought us to our next doctor, a GI doctor who helped heal his inflammation (and confirm his soy intolerance)!  Our next stop was the PCRCD for a consult with Dr.Jyonouchi and her expertize on protein intolerances and the "root" of his allergy and beginning stages of healing his leaky gut.  We have learned, done, and accomplished a lot in a year.  

Recently, we had a benefit for our Little Man, to raise awareness and funds for research as well as funds for his medical and specialized food expenses.   His godmother, my sweet sister-in-law, made a slideshow to share his story.   I have turned that slideshow into a video to share here: FPIES: Our Little Man's journey.

FPIES Friends!

I "met" this FPIES family online last year, when she joined the FPIES babycenter group I was already a member in.  She titled her post something like "MN families".  I remember that post as if it was yesterday and it was almost a year ago!  How exciting!  Another family close by!  Well, as long as you consider 5+hrs.close by!    We have connected on many levels and conversations online, through FPIES support groups, facebook conversations, blogs, and phone calls but we had yet to meet in person.   

Our Little Man's benefit was planned for our hometown, which was further north than they live! But we wouldn't be passing by their house on the way; but they did it one better!   They came to our benefit!  A 3hr.drive!!  They even brought Kara to meet Sam!  Kara and Sam are just a month apart, and received their diagnosis around the same time.   They both have FPIES and intolerance's to milk and soy and have limited diets.   They connected right away, as if they had known each other all along....much like we did! 

I have been so grateful for the friendship we share, the common ground shared in the crazy world of FPIES.  Friends that become like family....

Hope

Hope can come in many forms.  My hope stems from my Faith, the fingerprints of God can be visualized throughout our days.   We have been given the gift of sight, to see this in every corner of our lives, throughout the past 2yrs.  The gift given through the child of a chronic illness.   I am very well aware that it could be worse, things could be more complex, our Little Man could be more sick, have a diagnosis more devastating.  Please know, I never intend to imply that his diagnosis is the worst thing that could happen.  Although it is very difficult right now, we always have hope.   Hope for things to improve.  For his diet to advance, for him to have more pain free days than days and nights filled with pain, hope that he will continue to develop on track, that he will continue to gain weight and grow appropriately.  Hope that the means will be made available as the need arises.  Hope in the Faith that we are doing everything within His plan to help our little man heal and thrive through this illness.  Hope that even if he does not outgrow his allergies, or that if they develop into more illness, or auto-immune disorders, that God will provide. 

We have spent so many countless hours researching into his allergy, researching into helpful doctors, doctor appointment after doctor appointment.  Some helpful, some not so much but always worth that risk that it could be someone that may be able to help.   Along with that comes costs that are priceless but not countless.  

When our little man is screaming day and night, pain is with him all hours of the day, we are told an expensive prescription-only formula will help him.  It's costs are high but we do not hesitate, if this is what he needs- we will do it.   After a few months of emptying out our savings account, our insurance appeal is accepted and the formula is paid for.   God provides, we have hope.

We then have a little man who is throwing up every few days and we hear of a hospital (CHOP) that has physicians familiar in diagnosing this rare allergy....what would you do?   We got the first appointments available, and make a trip half way across the country.  We were blessed to find an allergist that not only knew immediately that Little man has FPIES but also that his worsening of symptoms and inability to heal is due to a corn allergy.   God provides, we have hope. 

We find out the prescription based formula that so many kids are able to thrive on,  is what is causing his pain and throwing up and inflammation to progress, now we must move him to a homemade formula with specialized ingredients available only through special order or natural food stores.   We can't not buy it, and there are no sales on these items, no coupons to clip.   His new formula will not have insurance reimbursement.   Just when we feel there is no way we will stay afloat for another 2 weeks, something comes up that helps us through.  God provides, we have hope. 

Little man continues to be ill and requires a month long hospital stay, providing for a family through a hospital stay stretches past our already overstretched budget.   We continue to have Faith.   God provides, we have hope. 

A specialist in Non-IgE Food allergy is found to be accepting patients through her research study.   It is half way across the country again, and we feel her consult will be a big piece to our puzzle.   The research I have spent countless hours doing shows me that it will be a worthwhile consult.   We have achieved a better baseline with him than we could do on our own, with her help we are closer to healing him.  God provides, we have hope. 

A benefit is planned in our little man's honor.  A benefit to raise awareness and funds for research but also to raise funds for his medical expenses and formula.  God provides and once again, we have hope.  

Our boys....

Afterall, the title of the blog is FPIES and Mudpies (aka, our boys and the muddy picture FPIES creates in our world).  Our boys, our 3 other boys that I don't often speak as much about because it is our Little Man with FPIES, for whom this blog is primarily about.  

But our three other boys are a big part of this picture.  It makes things more complicated and more rewarding all at the same time.   We dismissed early symptoms of little man because of what we went through with them in earlier years; but then once we realized his symptoms were progressing- it was easier to connect them to his protein intolerance's because of what we went through with them earlier in the years.  Little man has had many days of feeling ill and reactions which makes it difficult to have 3 other boys to take care; but we also have 3 helpers and little man has 3 siblings to learn from everyday.   Having a "large" family doesn't take away as much as it adds.  

Recently, we had our benefit for little man.  Our oldest W. wanted to contribute, he came up with the idea to do a lemonade stand, offering cookies, coffee, and donuts as well.   So, then our second, J. wanted an idea of his own.   We came up with a kiddie game stand- to help the kids have fun and be included.  Giving them jobs to do during the benefit helped keep them busy and out of trouble, those were my goals.   But they surpassed all goals.  People coming to the benefit were far more than generous with the 25cent charge for the lemonade stand, W. soon found himself trying to make change for a $20 while the purchaser walked away.  W. also enlisted our third son, T. to help with the lemonade stand.  W. is good about helping his little brothers, teaching them and including them.  He gave him the job of handing everyone their purchases.  It was the perfect job for him and he took it seriously and did it with pride.   J. ran his games while giving out prizes and was proud of himself for being the dispenser of fun!

We thank all who helped our boys feel included in a special and important day for their little brother.  We are proud of them and how well they behaved and managed their roles.   We are blessed parents.  We have rewarding jobs.   Who wouldn't want to get paid in giggles, smiles and adventures?



Is it all about the gut flora?

There are several articles on gut flora and gut-brain connection but I still can't quite seem to connect precisely what is happening in medical terminology.  But I can't help but take note of what I see happening before my eyes day after day as we push through probiotics and look at food trials for Little Man. 

Is it really all about the gut flora?  Is that really at the root of all this?  Isn't it amazing that "bugs" in our gut can control and influence so much of our body's functions?

As I've mentioned, we have seen some positive changes in many area's with consistent probiotics for Little Man.  What I have also noticed is that missing a dose of probiotic, or going too long between bottles (and his dose), he starts to slide backwards again and what we see are symptoms we would be watchful for in a build to reaction.   This leads me to conclude that reactions in atypical FPIES really are about the gut flora environment....is it the leaky gut, what about 'die off'?  Either or both. 

In short, leaky gut comes from having dysbiosis, having too many "bad" gut microbes and too much yeast/fungals that take up more space and push through the intestinal wall- making spaces between the tight junctions.   These "holes" is then where whole proteins pass through and thus become allergenic as the body perceives them as toxin (being they are not fully broken down); but this would also be where toxins pass through- toxins from the release of bad gut bacteria "dying off".   This release of toxins into the bloodstream has a whole range of adverse effects on you.   It is thought to be at the root of many gut-brain disorders as well as auto-immune disorders of inflammation.  It sure makes a lot more sense as I see it play out, piece by piece, with Little man!

We had a beautiful "baseline"- with his hemp milk formula, occasional millet and peaches, combined with consistent probiotics.   Little man is missing nutrients in his formula- mainly Vit.C and B vitamins- these missing nutrients will be critical to moving to the next steps....but can we move forward without them?   We wanted to try, to help him with his anemia.   Trying Elk does not bring on any FPIES looking symptoms and he enjoys eating it for 3 days.  By the 4th day, he is becoming a Dr.Jekyll/Mr.Hyde kind of boy and he of course refuses the Elk meat.  He also eats much less of his formula. What is this about?

Is the addition of elk changing his gut flora just enough?  Probably?  His body needs to process through the changes stemming from his gut flora.   And now we question how to push through- with a off and on cranky little boy who doesn't want to continue eating the food we are trialing; or his formula! 

Coconut is supposed to be an natural anti-fungal.  If these symptoms are from the fungals taking the opportunity to feed off this new food by products and multiply to unhealthy levels again, we need to control that.   We have been working through small amounts of coconut for the past month or so.  I make some 'crumbles' with coconut manna- and they are yummy.  He loves them.  Then I try to put some coconut oil (manna) in his formula- to begin to replace the not-so-healthy safflower oil.  He refuses to drink it and then we play bottle battle for half the day.   Finally he starts drinking his formula (without coconut) again and begins to feel better and we see less of Dr.Jekyll/Mr.Hyde and more of the calm little man we know is under all these symptoms.  

This is where my thoughts were months ago, that once we began food trials strong again, that it would need to be carefully chosen foods, and likely rotated through- so no symptoms get overwhelming (for him or us), so his body has the time in between to re coop and win these battles.   It will be a long process, but I know it will be worth it to get him a better menu. 

Two Year Well Child

Little Man's birthday is next week, so we got an appointment scheduled and completed yesterday.   First on the agenda: weight check.  Little man is now 24#8oz. and 34" tall.   He is in the 19th%tile for height and 12th%tile for weight.   Holding his own curve, although it looks like a bouncing ball all around the 10th%tile line- he does stay around 10th%tile.   One the growth chart, it is more about the curve than about the number.   A pound or two at this age is all that separates from one end of the curve to another.   At his highest (at 8# at birth, he was 57th%tile, he hovered in the 40th%tiles for those first 6mo, and then took a plunge from Nov.2009 to January 2009, this is after we tried soy for the first time and when began to multiply quickly, except his weight.   He maintained his own curve again until after corn fail when he hit a 5%tile low, not dipping that low again until after soy challenge fall of last year.   The patterns present themselves when you look at it all laid out on the growth chart graph.  I follow his weights not because I want to obsess over every ounce but because the patterns of intakes and outputs can tell us a lot about what is going on in his gut- healing or inflammation? Absorbing nutrients or malabsorbing them?  

Height taken, it is off somewhere because his height curve is a bouncing ball too....that doesn't make sense.  People don't shrink like that.  But there are a few weights like that too- done in off-pediatrics floor appointments, where I want to just say "don't record that, you didn't do it right anyway and his growth chart is enough of a mountain range".   He is much shorter than his brothers at this age, after all their daddy is 6'3".  But maybe he simply will take after his French ancestors (my dad), so then he's right on track.  

The nurse enters his height and weight in the computer, and prints me the growth chart. She hands the paper to me and Little Man grabs for it, takes it and "reads" it- as if he is studying it.  This gives the nurse a good chuckle.   He does this a lot with books at home as well, full intent into the book- as if he is reading it.   I admit, it is super cute.   The nurse is surprised that he does that a lot.  I comment he does it with writing too- uses a pen/pencil with paper and will look and draw as if with much intent.   She asks to see him do it, so I hand him a pen and he promptly takes it and starts to "draw"- complete with tongue sticking out!  It was priceless and made her day.   "See you later" he says to the nurse, her part is done and in comes the pediatrician.

Quick discussions about his weight gain, and current measurements.  He is growing proportionately, and appropriately at this time, and that is encouraging.  Next is his development.  I check off on a "scoring" sheet for things he should be doing at this age.   He "scores" at 2yrs.3-6mo. on everything which is good that he's meeting base milestones but I already knew that.  It continues to amaze me that he isn't further behind, with everything he goes through.   That said, I don't agree that he is in the 2yrs.3-6mo. milestones category, not if the category's were written with his brothers milestones in mind.   But I do feel the things he may be a few steps behind on, he will catch up.  Here again, he's following his own curve and developing appropriately.  We discuss his speech specifically, I am a little concerned, or more like watchful, that his speech has "exploded".  There is a point with toddlers where they go from a few dozen words to so many you can't count.   Little man has his few dozen words, uses them well, learns a new one every day or every few days (depending on how he's feeling) but he hasn't exploded his language yet.  I'm not overly concerned, just watchful.  The pediatrician feels the same- not over concerned but agrees to be watchful, if we haven't noticed his "explosion" of language within the next 4-6mo., we can move for further evaluations.   I agree, this is a good plan.   The pediatrician adds that he feels little man is just a calm natured little boy, and will talk when he has something good to say.   He is probably right. And he is right that little man is calm natured, we've been getting a lot of comments on that lately and his daddy and I can't help but to think of the first year of his life when we were told it was his "temperament" that made him so fussy and non-sleeping, and crying all the time.   I know, in my heart and soul that Little man was a calm spirited boy- hiding underneath all that pain.  

We wrap it up with discussions of his current diet, current goals for expanding his diet, a peek at his eczema that popped back up after sucrose reaction and hasn't completely quieted down yet.  A complete exam, for which little man is so cooperative for- he has this doctor visit thing down!

And then an anemia discussion.  Last check was one month ago, do we feel he needs to be checked today?  No.....although he had a strong bloody diaper after blueberry (I will spare you the picture I took!), and has started some wood chewing again and has been more pasty looking some days, we had 3 days of Elk going strong, maybe we can replenish his stores with real food and avoid the offset he gets from IV Iron infusions?   The Pediatrician agrees we can do a wait and see, being that his physical exam looks good except his pale skin and somewhat pale in his lower eye lid.   We plan a weight and lab draw for ~6weeks from now, unless something else comes up in between.  Having a plan is good. 

Now, on to planning that birthday party!!

FPIES United Family Fund.....OOF-Da!!

OOF-Da Taco's that is!  HUGE thanks to OOF-Da Taco's for their generous donation of the proceeds from sales of OOF-Da Taco's at our Benefit/Fundraiser.    We were able to donate a sizeable amount to FPIES research, and suprassed our goal!!   Little Man's CHOP Fundraising page has just been updated to reflect that, check it out here: CHOP.  

The money is a great thing, don't get me wrong- we appreciate it to no end.   But what I am more grateful for was the manner in which it was given.  So generously, no conditions, all heart.   Parenteau's OOF-Da Taco's is close to my heart, always will be.  It was my first official job as a summer-working teenager.  I worked there for 4+summers.  It was a great first job, where hard work resulted in good pay.  Where you were appreciated for the hard work and responsibility you displayed.   My sisters followed suit and also worked for OOF-Da taco's, and my youngest sister still does.  She is a Manager and she not only planned our Little Man's Benefit/Fundraiser, she donated her time worked so that more of the profits could be donated to FPIES research.   The owner also donated his time (as if his profits wasn't enough!), and helped my sister selling taco's for FPIES research!!   OOF-Da Taco's is such a great company to work for, others donated their time to help out as well.   A-Mazing!  Simply amazing and blessed. 

I am so proud to Thank OOF-Da Taco's for their contribution and know that their generous donations, and those of others, will be instrumental in the research funds.