Sharing our story....

It was a decision to make our lives visible, our FPIES experiences known.  It was my first observation in this FPIES community, that there were more blogs and support groups than there was medical pages.  Sure, there were those handful of FPIES papers- mainly from Mt.Sinai where much of the FPIES research has come from over the years since Dr.Powell first coined this syndrome that had been noted by other doctors as a severe inflammation of the entire intestinal tract, causing vomiting, diarrhea, dehydration, often lethargy and sometimes bloody stools and shock symptoms.  There were a few moms, many of them also active in the support group on babycenter, that had started blogs - to share these everyday experiences, how they learned and their tools for thriving through this rare allergy.  In June, shortly after our formal diagnosis, I began this blog outlining our journey.  The good, the bad, the ugly. I quickly learned that as I was learning, this blog was becoming more about what I was learning- my inner working thoughts of how I was tying what I was reading in journal articles to my own son.   So, I started a 2nd blog- My FPIES File Cabinet, a resource page of sorts.  A place to keep those "research" posts filed, while continuing to chronicle the experiences we were having with our little man and his FPIES.  Since then, I have also joined with other moms and founded The FPIES Foundation.   I am passionate about sharing our story, sharing my personal insights seen through my clinical nutrition goggles; but also about sharing resources, tools, experiences, and insights - not only from experienced parents but experienced medical professionals.

From June of 2010 to today, August 29, 2012; I have logged 385 posts (and yet I'm still months behind) and have had over 35,000 page views (wish I would've figured out how to put that little page ticker on my footer at the beginning); it's been humbling to see how many have followed and shared in our story.  Sharing our story has become an important part of this ride, as others have done before and beside me- it helps.

"When you stand and share your story in an empowering way, your story will heal you and your story will heal somebody else"  Iyanla Vanzant.

With the busy-ness of 4 boys and summer, the complexities of FPIES, and my work with The FPIES Foundation, I have been a little more absent from updates, but do promise they are coming.  I've been keeping a journal as we go through this muddy mess we've been in with little man's FPIES as he approaches and passes 3yrs.old and still stuck, still adding new triggers and not outgrowing old ones...the updates are coming!   Overall, he is doing well, growing and gaining weight and meeting developmental milestones, and continuing to teach us about patience and appreciation for God's simple gifts in life.

In the meantime, I would be honored if you would check out the new website for The FPIES Foundation.   It is a 'labor of love', a resource packed with tools for new families and struggling families, a place to share stories and find support - a network of caring.  A place to come home.   We are not alone.

Lazy Days of Summer

Summer has kept us busy, just having all 4 boys at home is busy enough!  We are well into the lazy days of summer and enjoying just spending time at home. 

First day of school is Sept.4th, our Kindergartner has Meet The Teacher and then starts on Sept.6th- Kindergarten this year for him!  BIG step! He's excited, we're excited, he needs this in his routine, he needs the challenges and the routine base.  My mommy guilt cries for how his childhood has been molded by his brothers chronic health needs.  I know it has benefited him as well- he is empathetic and independent (sometimes TOO independent!) in ways his brothers weren't at this age but the 1:1 time I got with the two older boys just hasn't been there for him.   This is where I need to remember that everything that has been given to us, including Sam's challenging days, are God's Will and repeat to myself..."Thy will be done" many times a day; because I do simply trust in that -- even if my human nature takes over and my guilt or impatience creep in, trying to understand what role I need to take....which parts does He want me to do? Which parts do I leave to Him?  Which parts do I ask for help with?  These are my daily struggles....where my Faith meets my human nature.  

One morning last week, I woke up (as usual) to the sound of Little Man crying "Mommy, I need you"- he doesn't transition well and waking up from a nap or night is one of those times when he needs help with the transitioning; so if I don't wake before him- I am woken to crying out for me.  This one particular morning, I woke up still half in a dream...tried to pull myself out but it was "sticking" hard....I had been dreaming about Our Lady of Perpetual Help and I couldn't "shake" it...it just kept repeating in my head.  If you are familiar with the image of Our Lady of Perpetual Help (or look it up), you will see that it is the image of Our Lady holding the baby Jesus.  I have the image, in a frame....it was my Grandmothers.  

The prayer is about needing help and remembering to ask Our Lady, the mother of Jesus, for this help- as she will advocate to Jesus for us.  So, of course we continue to pray to Jesus for assistance but we also ask his Mother to take our cares and needs to Jesus for us by praying to Mary.   We honor Jesus in this way, respecting his Mother.  The prayer and image are here: http://www.ourcatholicprayers.com/novena-to-our-lady-of-perpetual-help.html

It is again a reminder for me to ask for help, even if I don't know what I'm asking for (that is my downfall, I have a hard time asking for help and even harder time if I don't know exactly what I need).   

Maybe that is why I haven't been able to write an update....I have a hard time discussing (especially with those unfamiliar with the day in and day out of this invisible illness) because there are so many 'hidden' challenges- things that we as a family or Sam goes through that isn't "normal" but isn't something anyone can help with either.  His body wont' accept food as nourishment and yet he needs nourishment to live and thrive...that's the bottom line of this viscous roller coaster ride we are on.  And making the right choices for that balance is my constant, constant thoughts.  Food that makes him sick vs. avoiding foods with nutrients his body needs. Teeter-totter, tilt-o-whirl, roller coaster ride. 

Gone Camping!

Summer has been busy, even though we aren't doing too much away from home- or not as much as I would like (or typically do) for the boys.   But, in reality, it is a blessing in disguise...the boys get to just "be", we got some quality time with them while little man wasn't so needy and just in general spending time as a family, finding ways to maximize the summer hours while still meeting little one's needs (of eating every 2hrs, not getting over heated,etc).  

We have continued to push the ProViMin and the recipe with the double hemp milk has helped his energy level considerably.  And lately, he is really sprouting in developments of language and other skills (writing, drawing,etc) and it's been fun to watch him learn more everyday. He's not been overtly behind on his development, the skills are there- just not enough chances to practice them between being sick so getting to see him just sit and draw, create pictures, learn new words and concepts...it is fun and rewarding...and not lost on us. 

When I updated last, we were on our way camping.   We left on Friday after a lab draw.....hubby had went ahead of me with the 3 other boys to be there for the week, in a borrowed RV- from a close family friend (another firefighter family).  Without the RV, we couldn't consider taking little man- for 1). it was a week, a long time to be camping with a child with special dietary needs and 2). hubby would have taken the van (and a tent), so we wouldn't be able to join him for just the weekend, which is what we were doing now.   I drove up with little man, who slept much of the way (thankfully) on Friday.  

He was SO excited to see daddy and his brothers, and Papa and Gma and to BE CAMPING!!  This little boy LOVES the outdoors.   Thankfully, Saturday was "only" in the 80's or so and he was able to be outside most of the day, we took him into the (air conditioned camper) after lunch to get him cooled down and hopefully get a nap out of him but no going, once he had a bottle and was cooled down- he wanted to be back outside, and soaking up all he could.   Hubby ended up taking him for a drive in the van down the road later that afternoon because he was so tired and overheated and needed some downtime.   Sunday came and we weren't sure if we were going to go home Sunday or Monday morning but with the forecast for the 90's and he was already showing signs of overdoing it on Saturday, I didn't want to push our luck so we drove back on Sunday afternoon (a 5-6hr.drive that took us more like 8hrs coming and going)- he again slept alot of the drive.   He was glad to be home and even more excited when daddy and the boys got home on Monday night.  

Bottle please, mommy

He ASKED for a bottle! Actually 3 times yesterday!  What music to my ears!  He asked for a bottle! (this is normal for him except in the last few weeks).   So, maybe we are turning a corner and he is healing or whatever it was that was the catalyst for this recent spiral is moving out of the picture?...

The other thing I changed was that I increased the hemp in his formula "recipe"- taking the recipe from the 18cal/oz to 21cal/oz (at least) - and he is feeling SO much better!  I did have to change the amount of ProViMin that goes in to the recipe (and haven't calculated out that yet), but this seems to be the break he needed in this spiral....he needs the calories more than the nutrients (so his body tells us) - and I had it the other way around.   The 'recipe" is too thick with either too much hemp or too much ProViMin (powder).   I will have to do some calculations over the next few days to see where he is now at with nutrients but I am just so relieved he is coming out of this "funk".   He has a few spots in the day where he is edgy but nothing compared to how he has been over the past 2-3 weeks.  Another situation where you kid yourself on how bad it is, just finding ways to get through it, until you're over the hump and looking back realize how hard it was - which means how "off" he was.   

I still am unsure what the catalyst was- whether it was the heat and then not getting enough to eat or if it was the work in the basement (mud and taping,etc) and the subsequent corn exposure it gave him.   His allergy is a gut allergy and we avoid corn ingestion like the plague.  In fact, he hasn't had a corn ingestion reaction (full vomit) since a multivitamin in Jan. 2011.  However, he's had corn contamination symptoms, and he's had an inhaled corn reaction (vomit).  This concerns me that his corn allergy is worsening, or that he has more than FPIES going on (which we have suspected all along anyway) - not that other kids don't experience inhalant FPIES symptoms as well but it is more commonly heard of with EGID (eosinophlic gastrointestinal disorders) - which are very close in nature to FPIES.  In fact, I've often wondered if he doesn't have some form of an EGID that has gone undetected because of how difficult/specific it can be to diagnosis - especially when we keep his diet so tightly controlled.  I don't know but inhalant allergy symptoms sure do bring things to another level.  And I've been noticing a pattern of this in the past - days when hubby mows the lawn and little man wants to ride on the tractor- he inhales all those fumes (yep, ethanol = corn), times when I've used a different laundry detergent and it has a perfume smell, he gets very pale/sheet white on these days...the smell alone - with all the corn, is making him sick.   

I asked this on one of the corn free forum's I follow and was actually a little surprised by the answer- how many people had actual experiences with house remodeling....and ER visits because of how severe it set off their corn allergy (people on these forums have varied degrees and forms of corn allergy from your typical allergy of hives/wheezing/etc to GI distress to neurological, emotional/mental effects,etc).  I follow these groups because it is at least a starting point to helping me learn and keeping our son safer.  And I am so very grateful for them. 

The dietitian let me know today that she was low on her numbers for his calories/ounce in his formula recipe- wow, that is a relief!!  Although it is still only 20cal/oz, it is better than the 18 she had mistakenly calculated it at.  She thought something must have been off so she went back and recalculated it.   She has a program for calculating it but the Hemp seeds aren't in that program- so she has to add those in by hand - and she was doing a full analysis of EVERY.SINGLE.NUTRIENT.   I'm glad she double checked, it makes me feel a little less sad about how low he went for those days - either because of the heat or because he was feeling poorly from the potential corn-y exposures....or (and likely) a combination of both.   

Whatever it was, we seem to be over the hump - and I know the prayers that went up were pivotal with this.  God has been trying to teach me this....that the answers to my prayers don't always come from my whisper to His ear but instead from my whisper to the hands (and knees) of family and friends....showing us that we are never alone....no matter how isolated we feel when no one knows how to help when he is sick.  

We are blessed. 

That Mommy Instinct once again...

Before little man started going downhill again, my mind was going towards next steps.  I still wasn't feeling quite like ProViMin was a sure bet just yet- until we saw some follow up labs and weight checks,etc. but did want to start preparing for some food trials- to build his diet, using the tube if possible -- for the trials and to get re-acclimated to the tube to utilize it to get his caloric needs in without obsessing about every ounce of formula and having to choose eating over daily activities.  

We couldn't stay with our heads in the sand for forever, it was time to move forward.   So, I had made phone calls to get a follow up with the dietitian, and a follow up with the GI.  I also called home health to get them on the radar that we would want some assistance with getting Sam used to his tube again.  A week went by and no one called us back (no one from the GI office).  Hubby made the follow up phone call- to see if we could get some attention.  By now, things were starting to fall and the trials were getting further from my mind....

We finally got the follow up appointments scheduled.  But now, we have new things to discuss with everyone because I'm noticing he is not picking up on his eating- even though the heat has broke.  I did a 3day "snapshot" check of how many ounces he was taking and it was around 28-32....I wasn't positive how many calories/oz his formula was (with ProViMin mixed into hemp milk) and was thinking it was around 20cal/oz....this is not enough calories.   Maybe this is why he is so tired?  But then, why doesn't he eat (drink) more?  I am offering a bottle every time I turn around it seems- and realistically, it's every 1.5-2hrs, and he accepting them every 2-3hrs. Something just is not right.   It appears (from his symptoms) that his anemia is coming back (low appetite, low energy, and disturbed sleep), but why? 

We went to the Dietitian appointment this week, and learned his formula is more like 18cal/oz.  I almost cried.  He is hungry, starving himself...but why?  Why is he starving himself?? The other time he self limited was when the food hurt him.  More specifically, the formula.  He did it with Elecare- starved himself into a hospital admission when he was 7mo.old; he did it with Neocate before we switched to Hemp milk, he was doing it with Alimentum and now again....is it the ProViMin or?? Either his appetite is really off because something is "disconnected" (his anemia or his carnitine or maybe even his thyroid?) or he is reacting to the ProViMin so he is self limiting- taking only when he is so hungry he can't not take it.   When you need ~1500 calories/day and instead you barely eat half that- what would cause that???  

He has a lab re-check in a week and a half but we decide we need to request to move it up, he is symptomatic and another week and a half he may need to be admitted to the hospital if we don't figure out how to help him.  

The lab draw was yesterday.....and it is concerning.   His anemia is back (why??), his protein stores are low (why??) and his Vit.D levels are low.  Well, an easy answer would be that he isn't getting enough but with the ProViMin being a powder - even though he's only taking in 30oz/day- he still gets the better portion of his nutrients from the ProViMin....certainly enough not to cause this.  Our Dietitian recommended we check a few other nutritional labs as well and they are within normal ranges so why would some be low and some be fine if he wasn't getting enough nutrition?  The answer seems to be that he isn't absorbing the nutrients, the iron is the same nutrient he malabsorbs when he has inflammation;  that the inflammation is in that place in his small intestine. And with protein stores being low, despite getting adequate protein intakes....he is malabosorbing.  But, why?  What is causing it?  Is it the accidental corn exposures?  Is it the inflammation from Alimentum not healing?  Is it from the ProViMin?  We don't know....we are hoping the GI will have some idea's but worried she may not.  

The pediatrician's recommendation is that he is clearly not getting enough nutrition on his current plan, and that he needs to be back on the Alimentum since that provided the nutrition he needs.   Quite frankly, this was poor advice.  For one, the ProViMin does meet all his needs.   The Dietitian has charted this, that he needs about a cup of ProViMin/day to meet 100% of every nutrient.   He is only getting 1/2cup right now (at best) but still getting a good amount of most of his nutrients.  The numbers don't add up....he should read the Dietitian's note so that he can give informed recommendations, to help us make informed and the best-interest-for-our son decisions.  The Alimentum took over 50oz/day to meet his nutrient requirements-- and he wasn't drinking that much...and yet he was malabsorbing even more.  He was not tolerating the Alimentum, and his body was rejecting it as quickly as it was taking it in....causing more damage to his stores than if he wasn't taking it at all!   How do we know this?  His behavior, his mood, his appetite, his sleep, his crying, his pale skin, his blue around his lips, his labs, his dramatic decline in iron stores and hemoglobin, his terrible-terrible looking and painful, leaking tube, his no weight gain, his volume-ness stools, and the last telling sign was the analysis of those stools, which revealed a high alpha1 antitripsin level and a high calprotection - indicating malabsorption of proteins and significant inflammation and enteropathy.   

His color improved on the ProViMin, his mood, his behavior.  His diapers have not.  My suspicion is that the Alimentum caused significant villi damage and that the ProViMin was working- when I was able to get enough in him, but with the heat and his decline in intakes, he started falling behind....and now we're seeing the (quick) effects of that.  

Either that, or he's reacting to the ProViMin- something subtle...  

So, the plan?  We need to push the ProViMin and see if things get worse or better.   He won't drink more so we will need to use the tube- it's make it or break it time with this tube.  We had our home health nurse come by on Thursday to see if he would allow her to check on his tube and even use it - and he did!!  It took a bit of coaxing but it ultimately went smoother than any of us anticipated!  We are encouraged that since he now doesn't have constant pain with it, that he can start using it again.   We will plan to give him whatever feeds he needs above his formula intakes, we hope to be able to do this at home but worry that the GI will want him admitted.   When he first came home from the hospital after having his Gtube surgery, he had the extension hooked up 24/7- there is a "button" in his stomach wall, that gets opened and an extension- the tube- hooked up to it for 'feeds'.   We took that extension off because it was pulling (and possibly preventing healing) and the tape was causing a reaction to his skin (painful).  Getting him hooked up for feeds since has been a challenge.  So, we may try this method again for a few days/week to see if we can get him back on track....or it will make it clear that ProViMin is a problem. 

Is it just the heat?

Little Man had been doing well, then the last week of June brought really, really hot days....and we tried to stay cool; but it wasn't enough.  His appetite tanked, and it became my full time job (not that it isn't already) to push more and more with the bottles.  I was worried that he wasn't even taking enough to stay hydrated, much less for his nutritional needs.   And I prayed for a break in the heat and we kept the air on and kept him inside and tried to keep our activities low key.   And I wondered why he was responding so negatively to the heat? He would sweat within 2 minutes of being outside, and 15minutes would have him drenched in sweat!?! 

We enjoyed his brothers 5th birthday party- a backyard BBQ- and he was doing primarily well that day....it was the days that followed that he started to decline.    Was it the heat?  Was it being too busy all week preparing for the party and having church school and going, going?  Or, did he get a corn exposure?   

Something isn't right because he clearly started going downhill that week....maybe he didn't recover from the IV iron (the dextran that is corn), maybe his body isn't recovering from the Alimentum inflammation?, maybe it's something else in his diet, maybe it is the ProViMin,...

I'm getting worried....one of the last times we spoke to our GI she relayed that she was "getting frustrated" that we don't understand why his gut doesn't function properly; and that she wanted to have him admitted (somewhere, not necessarily here) that scares me.   It scares me to have him admitted here because they always set him back, it seems no one even tries to understand his FPIES and the mechanisms that happen in his body. And getting admitted someplace else?   Where?  Where could we travel, be away from the boys, spend time away from my family, and work, and put him through more and more tests and get actual real help and answers?   Where??  Where would we go that we don't get the overwhelmed door shut in our face, travel how far to say there is nothing else to do, nothing else to help him....

So, with all of this weighing heavily on my mind, and little man clearly not getting better- even with the break in the heat, his appetite was not picking back up and his energy was really low.  His sleep was getting more out of whack- not waking in his sleep in pain, but unable to fall asleep or sleep very long. Something is off, what is it?   

Seemingly Overnight....

Our Little man went from infant/toddler to preschooler.   When did this transition occur?  Was it his 3rd birthday this month?  No, it was a little before that, but not much.  Seemingly overnight.


Three years is when studies show many FPIES kids begin outgrowing their triggers (allergies) if not before.  We are not there yet as Little man is still reacting to new foods, he is still trying new foods.  However, we do see the sunrise through the long tunnel - it's there.....the length of the tunnel we still don't know.

We pray this is how his FPIES will come to and end as well, seemingly overnight.  We have no indications of when that transition may occur either.   We rest in our faith, and when that rest is weary- we pray for strengthened faith.  A faith to not know the answers, or need them but simply to trust.   A Faith to trust in the will of God.

Complete Trust in God.

From CatholiCity 

Saint Francis de Sales (1567-1622)

Do not look forward to the changes and chances of this life with fear. 

Rather, look to them with full confidence that, as they arise, God to whom you belong will in his love enable you to profit by them. 

He has guided 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 takes care of you today will take care of you tomorrow, and every day of your life. 

Either He will shield you from suffering or He will give you unfailing strength to bear it. 

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