Little Man's "Faces of FPIES Spotlight" visit with Hope for Wyatt

When I first started blogging, among the reasons to do so was to share Little Man's story with others - to keep friends and family updated but also to help other families know some of the experiences we have had.  This blog, although I have written nearly 400 posts in 3.5years, is a mere fraction of what Little Man's FPIES is and looks like from day to day; and that is only a mere fraction of who HE is.  FPIES is a diagnosis, not a definition.

I wish I could share more, I wish I had more time to share more because I have always taken my time with my posts -- being very careful about what I put "out there".   There is so much to Little Man's story that would be scary to read if you didn't know his whole story, so my blogging has lagged behind.   Some would say (have said) that my posts here, sharing Little Man's experiences, are 'scary' in and of themselves, just for being what they are.   I wonder if those people think of what they are saying?   That a little boys life is scary? A sweet little boy only wanting what any other 2, 3, 4 year old boy would want from life -- to be happy, safe and loved.  I never intended telling his story would be 'scary' because his life isn't scary.   FPIES itself can be scary, not knowing how to help your child through the pain, symptoms and vomiting of the FPIES being "triggered", not knowing how to properly read a food label, or how to completely exposures of the 'trigger' food, not having adequate medical help when your child is sick,....these can be what is scary about FPIES.  But, they don't have to be.   One can learn how to read a food label, how to avoid a food trigger, how to avoid cross contamination triggered symptoms and reactions, how to advocate for your child with their medical team -- your partners in the care of your child.   Our son's experiences and life are not scary, FPIES can be scary but it doesn't need to be.   Empower yourself, help empower others, share what you learn, advocate -- help your family, friends and doctors learn about what FPIES looks like in your child and how to help keep them healthy and thriving in their individual environment.  Get help and support and know you are not alone.

I am not alone in our blogging, there are now several dozen blogs dedicated to FPIES from other families on this journey, sharing what they are learning, what FPIES looks like in their child, how it affects them and their family.  A friend I have 'met' on this journey, who recently started to journal her families journey with Food Protein-Induced Enterocolitis Syndrome on a blog, "Hope for Wyatt", asked me if I could share Little Man's story for a "Faces of FPIES Spotlight" she is doing on her blog.  Hop on over and read what we shared on "Meet Samuel", and "meet" Wyatt and his family while you're there.

FPIES Registry!!

The FPIES Foundation announces the first of it's kind FPIES Patient Registry!  This is an exciting step for the families of children living with (and outgrown of) Food Protein Induced Enterocolitis Syndrome!!  A patient registry that provides a voice to patients in a rare diagnosis is so important, a diagnosis that still has research windows open with treatment and management protocols still being developed.  The exact mechanisms of FPIES is yet to be fully understood....and in the meantime, the number of those diagnosed is multiplying rapidly.   This is a critical time for the voice of the patients to be connected -- for doctors providing care today, for studies of FPIES, for additional, new and varied research for tomorrow, for families to be connected, for FPIES to be 'on the map' in this new way.

Please add your voice, your child's voice to this registry.  

Advocacy

“I always thought someone should do something about that, then I realized I was someone.” ~ Lily Tomlin

FPIES and Advocacy are words that seem to go hand in hand.  Many times, for me, the word "over-advocate" has come to mind; but that is another story for another day.   Today, the story is on Advocacy in complex diagnosis.   Complex Child E-Magazine put a call out for parents who have advocacy stories to share them for their September edition, highlighting Advocacy.  As I mentioned above- I have a few on how I've had to advocate, and too many times, over-advocate for Little Man's needs (medical, physical, psychological, etc). All of these the inspiration to the one that I felt compelled to tell...the story of the beginning of The FPIES Foundation.  I wanted to help others feel empowered with the education and support they needed and to advocate where needed- for their children, for the diagnosis, for children that may follow in the spectrum of this diagnosis. No one should travel this journey alone.  A Foundation was needed, a Foundation I, along with 8 other moms and a community of families, created.  We created it to help families advocate for their little ones and their families within the challenging situations that a rare and little understood diagnosis of FPIES was, and remains yet.  A Foundation whose mission is woven into every ounce of our work, dedicated to offering tools for education, support and advocacy to empower families and the medical community.

You are invited to read more about the beginning of The Foundation for FPIES in the September edition of Complex Child: FPIES, The Formation of a Foundation.

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. 

Murphy's Law

It seems like whenever I saw something, it happens.  I was dragging my feet (or burying my head in the sand) to make phone calls to the care team.  Any mom of a chronically ill child will relate that it is a lot of work to coordinate everything, and sometimes you just wish someone could help with that.   In the past, I've had a misconstrued idea of what that entailed for a chronic illness....my perception was that preventive care was the goal.  That, with known chronic issues surrounding a health illness, it would be beneficial to stay on top of problems that repeatedly come up, to steer care in the direction of health.   I'm serious, even if that sounds like a sarcastic tone (those reading this that know better)- I honestly had an expectation far from the one we experience with little man's chronic health needs.

So, our complex care nurse called yesterday morning to let me know that our pediatrician looked at little mans labs and was very pleased with how they looked that indicated he responded well to the IV iron.  She then relayed that "he would like to see him back on the Alimentum as it seemed to provide the necessary nutrition while working on additional foods by mouth".  I literally chuckled outloud...I had to catch myself and back up because I didn't mean to sound disrespectful and had to remind myself that the Pediatrician had told us he would be on on vacation this week- he is checking these labs from home out of his concern for our little man and follow up....and he must've just forgotten that we are not on the Alimentum, that that was causing enteropathy and caused this dramatic decrease in iron and hemoglobin.   So, I told her that yes- we would continue the ProViMin but he would not be getting the Alimentum.   I go on to tell her my thoughts on where he is at right now and where our plans are for him in upcoming weeks, who I need to call or coordinate discussions with....saying, I am also very pleased that his labs look so good- that his body responded so well to the IV iron and that he must be tolerating the ProViMin well too because he has never responded this well to the IV iron before (ProViMin helping him stay ahead of the line).  I am very encouraged by that.  This is also because we have been pushing the bottles- so that he gets as much of the ProViMin that he can during the day, which means less eating, even of his safe foods- because he isn't as hungry because I've just had him take a bottle (every 1.5-2hrs pretty much around the clock).  The ProViMin is a powder and it is mixed with his hemp milk and a few weeks ago, I asked the dietitian what the iron content in it was -- he gets over 2-4x the iron his body needs (if he didn't have decreased stores, she wasn't positive what his needs would be to replenish stores and deferred that discussion to our GI), but also that it provides well over the protein that he needs in a day as well...so we are hitting those numbers well (which is good because of the enteropathy, he was dumping proteins in his stool and his stores were low).   So, we've been pushing the ProViMin to get these (iron and protein) levels restored, as long as he tolerates it; and to allow his gut the chance to heal from the Alimentum so we can do food trials again soon.   We need a follow up with the dietitian to find out where he is at now that I have the recipe of the ProViMin and hemp milk and how much he takes in a day all worked out and to help decide a list of foods for the upcoming trails. 

I also discussed how he hasn't been sleeping well at night and having some moodiness during the day that we aren't sure what it is from but doesn't seem to be from foods that we can corelate so I was curious if the genticist thought if it was from his low carnitine levels again.  Carnintine is an amino acid found in meats and dairy - which he does not get; it is supplied in formula's but there is none in hemp milk....also none in TPN (which is when we first discovered he was carnintine deficient).  Carnitine helps keep blood sugars stable and so with a low carnitine- maybe his body isn't regulating his blood sugars as well.  The role of carnitine and the effects of the deficiency is much more complex than that but that is what we saw most from Sam being affected by being deficient.   

We also need a follow up with the GI doctor- to discuss further this enteropathy and how he is doing now, and to get a letter of medical necessity for the ProViMin so we can see if Insurance will help cover the costs; and discuss next steps regarding foods trials and the tube.  

I also need to call the home health agency we work with and find out if they can come out for some regular visits to see if we can get Sam acclimated to his tube again - utilizing nursing support initially and then adjusting to us using it and him being comfortable with that.  Even if we just do 1-2feeds/day and we do that to give him the missing calories or nutrients in his day - so we can have less focus on a bottle every 2hrs, and more focus on allowing him to EAT (safe foods and trying new things).   And to do this- we would use his tube to give him a "feed" with the nurse but to also trial some foods- to expand his choices on his menu (and then later work on getting him to eat these foods that we determine as safe).  

He also needs a weight check and his 3yr.well child visit.  

I relay all of this to our complex care nurse.   She says, ok and goodbye.   

One message, one internal note cc:d to all his providers for her to send to almost all of his care team would save me multiple phone calls and get everyone on the same page at the same time, coordinate everyone's insights and recommendations and would be the ideal thing for him in this patient-centered care environment we are supposed to be belong too.  But, no- she's only there to pass along the message from the Pediatrician.  I know it's all my job, he's my son- I just can't help but wish we had more help from time to time; so I could be more mom and less nurse. 

Well, at least I ran through my own mental list now...so I can get started some phone calls.....head out of sand- here we go....

FPIES Experts

I've had this post sitting in "edit" since Dec.22.   I sat in the hospital room with our Little Man, recording his daily activities (intakes, outputs, symptoms, etc) in my logs as I always do, watching over the plan laid out by doctors, checking on ingredients of things to be put in his body or on his body.  I wanted to trust doctors, doctors who I know have my Little Man's best interest in mind but also doctors who have no experience or prior knowledge with FPIES- or really anything like it.  Instead, I have had to become knowledgable in FPIES.

I've been finishing this post in my head with how I want to desribe what an FPIES expert is.   Lets start with the definition of Expert from: merriam-webster.com: "having, involving, or displaying special skill or knowledge derived from training or experience".   Well, my training is in nutrition and my experience is a 4th time mom with first-hand, deep-in-the-trenches FPIES experience.

Parents are experts in their own children, they know their moods, their cries, their personalities, their likes and their dislikes.  To add to that, the parents of FPIES children quickly become experts in FPIES.  We have to, there is so little known.    Yes, there are studies, such as FPIES caused by Solid Food Proteins and FPIES: Case study presentations and management lessons but there is only so much everyday information that one can gather from these studies.   At this time, the most I have learned is from other moms, found in online communities for support.   We would all like to see that changed, so future children do not have to suffer as ours have - searching for a diagnosis, a direction, a baseline.

A few days ago, I did a post on what FPIES has taught me.   Of course, having a son with a chronic illness has taught me a lot about patience, advocacy, perseverance, strength, love, and all that life has to offer.   But I am talking about what FPIES, first hand, has taught me about Non-IgE food allergies, delayed-gut, food allergies.   About digestion and GI health.   About food, and how it is made,processed and produced in this country.   All these things, I have been taught/trained in- I have a degree in Nutrition....but none of these things I understood the way I understand them now, having learned things from experience.   What I haven't learned first-hand, I have learned from other moms- with first hand experiences.  Connecting all this together for real FPIES information, real help.  

This brings me to my daily question: if I'm an "FPIES expert"- then why is my son struggling so much to find a diet?  To tolerate foods?  God is giving me a very important, and strong life lesson.  He sent Little Man because He knew he was strong enough to endure this- to teach me, to teach his daddy, to teach his doctors, all to help other children.   He knew that with my background, and my nature to want to help others- He could use me as an instrument. 

If Little Man hadn't been as sick as he was, in pain daily we would not have made the trip half way across the country to take him to an expert Allergist,  if he had tolerated the Elemental formula, if we didn't have to fight with him to eat just half of his needed calories from that formula, to remain on it exclusively- keeping food from him for 5mo. with only worsening symptoms (and inflammation) - I would not have had the drive to make my own formula for him.  If Little Man didn't have continued intolerance's, making his illness complex - I wouldn't have pushed for 2nd opinions and a change in doctors on his Medical Team for his care.  If we hadn't done a soy trial- would we have known about the villous atrophy component of his FPIES?   God is putting all this in our path, all the atypical FPIES experiences in one Little boy so that his doctors will learn and help other children; and so we will learn and pass along what we have learned in hopes of helping other children/families. 

We, the moms, are FPIES experts, and the learning continues daily....

Mother's are meant to nurture, and fathers to protect....

"Mother's are meant to nurture, and fathers to protect.  It is so obvious how this [FPIES] would wreak havoc on those roles.  Dads have their own mind trip of not being able to protect and fix this.  And we hurt so terribly for our babies..." (thanks Nichole!)

More words from other FPIES moms.  We all echo the same thing in one form or another...the moms going through the same mind games of not being able to play our role. 

We, moms want to nurture - we need to nuture, our babies.  Our babies wouldn't be here if we didn't have this drive.   The drive to stay up all night with a crying baby, to find them nourishment for their body- whether that be a formula that can tolerate, or an elimination diet to nurse them, to push through when we're told we're over-reacting or crazy, or seeking attention, or first-time moms, or not coping 4th time moms.  To push through all of this, to push our own pride to the side and continue on for our children. Or, to leave all of that behind and go it alone....neither the easy choice.  Tough decisions to make for the health of our children.  

Dad's constant mind games because they only want to protect, protect from this being real, from facing the reality of a chronic illness and what that does to a family structure, to protect both mother and child from unlistening specialists who tell you that you are malnourishing your child, when all you've done is protect them, sacrifice so much for them, and fight for their health and well being.

The reality is dad's can't fix this and mom's can't love it out.   FPIES robs the natural order of things.   But, to accept that this is where God wants us, that is peace.  Our Little man is our gift...well, he's our gift #4, from God.  Each of our gifts have continued to give us treasures beyond measure.   Right now, we're in a gold mine of treasures with little man....if only we can continue to hold on to our Faith and trust that He knows our inner strength, that He only gives us what we can handle, and that He has his plans for us. 

Plans to make me stronger when this was so very hard for so many months to listen to my baby in pain, day and night -- with little to do for him.  So that when I was handed something to do-  I now can't do enough.  I want other moms to know they are not alone, I want to help, I want to provide hope to other families, mostly I want to empower other mom's the way I was empowered when I found FPIES and it FIT what my little man was going through.   Empowered when I watched the YouTube video of Jack that could've been a video in my house of Little man, to show me that I was not alone.   Empower me when I found a speciality children's hospital to take Little man to get his diagnosis so we could develop an action plan for treatment on this long and windy journey....

Plans to teach me what it really means to advocate for someone, someone who can not speak for themselves.  To live outside of your comfort zone, to only think about your baby and nothing else and how to get his voice heard....

Our nuturing isn't being robbed from us, but the rules of the game have changed.  Our instincts, our research into our children's illness, our advocacy for best care, our involvement in their every aspect of care.  Our monitoring of diapers, and foods, and reactions, and caloric intakes IS nuturing an FPIES child.

Dad's protection hasn't been stolen, but the rules changed on what he is protecting from.  Protection from crumbs, from trigger ingestions, from unlistening specialists, protecting the nuturing effects of the mother is probably the best gift he can give his child. 

Many days, Little man takes much coaxing to eat. Today was one of those days. A lot of holding, and offering the bottle- hoping this time he will take it, and take a good amount. A lot of time from my day just to make sure I'm taking the time to assure he has taken the caloric intakes he needs to. He doesn't "ask" for his bottle -- I don't think he ever has. But, he has always taken a bottle best from me, he trusts me that way....maybe because he knows I will persist until he takes some, maybe he just enjoys the cuddle time. Today it took a lot of persistance....and nuturing. 

Just a mom wanting to be heard....

Just a Mom wanting to be heard 

Sharing this website again.   A good resource for Rare Disease support.   Just a mom wanting to be heard, that has been me for months.  To see there are so many other mom's experiencing similar things (with other illnesses) is disheartening and encouraging at the same time.  Encouraging that I am not alone, but disheartening that others' are not finding the right avenues to navigate with doctors to hear the cries of a mom for her child. 

I do tire of the "fight"....I wish it didn't have to be such a fight to just have help for a child with an illness- even if rare and little understood.  I struggle with the "why does it have to be this way"?  I just don't understand why someone can't hear me, what I am not saying- what am I portraying wrong?   Is my patience being perceived as my son being healthy and not really needing the care?  I know it is a rare illness and a clinical diagnosis and I have tried to be patient.  But the fact that little man's illness becomes more complex is driving me to 'push' more - not only for him but for his brothers....who all deserve some normalcy in their lives.  

Normalcy that can come, despite having to cope with a chronic illness.  Normalcy I can provide, coping I am doing....but everything I could do better and with a less heavy heart if there was more support regarding his unique illness and needs surrounding the complexity of it.  But my mind does not turn off....always planning next steps, always worried about next steps, always wondering if he will get more and more sick if we don't continue to find out the right things to do to help him.  Always researching of what those right things might be.  Research more and more about allergies, about digestion, about nutrition, about food families and carbohydrate intolerance's, and now also about how to get a toddler to put food in his mouth when he has not had food for 8mo. and textures and tastes are becoming foreign.  And then when he does put it in his mouth, his stomach cramps he associates the eating with pain....and maybe he trusts me a little less. 

Tomorrow, we have hope.   We see a new GI doctor that has managed a few FPIES cases over the past few years.....although likely none as complex as little man since he works in conjunction with Allergist #3 and that was his comment when reviewing little man's history.  We will hold on to to hope that he can provide us with some support for continued management of this illness.  The missing pieces in the management of this illness involves just a mom wanting to be heard....

Proactive in care....

Walgreens came through!! It took them 2days but they finished his medicine last night. They worked really closely with us and were able to get it down to 2ingredients: ibuprofen and calcium carbonate. I can not even describe my relief!! We will look at getting other medications down the road too but for now, we're SO glad to have this one!!!!

Our son is our responsibility. It isn't the rest of the worlds responsibility to know what is best for our child. It is ours. If someone is unfamiliar with his needs, our job is to teach them. We often find people just want to help, and if they know how to help, they will.

I went in to Walgreens to discuss personally with the Pharmacist. I brought along a printed article (the one I reference on my first post here) on FPIES and explained our son's situation and how vitally important the medication be suited to fit his needs. They have been so helpful with us through this -- back before we got the insurance coverage for the formula he is on, we were buying it there- they always made sure to have plenty in stock for us to pick up whenever and always made a point to ask how he was doing. They were glad to now hear we have a diagnosis and plan for treatment to work with and were more than happy to assist us with this medication request. Yes, it is their "job" but working on it for 2days, researching FPIES and his needs specifically, and calling us to double check on ingredients and additives goes above and beyond the "job" duties. We always appreciate the people who do that for our little man.

Little man had his first dose of this medication last night and he slept WELL, and is a happy little guy this morning -- he's even teething his 1yr.molars and yet no frown to be found. Playing, exploring, giggling, happy little man.