Stuck Like Glue

Sugarland's "Stuck Like Glue" is a fun song, always brings on the dancing, smiles and giggles.  

In this world, of a chronic illness like FPIES, the journey has taught me more about taking the moments and stealing what you can from them.   Little Man loves music, as most toddlers do.   Music can turn a mood around, turn a day around.   Music can inspire and draw up meanings, remind us of times gone by, and put words to moments in life.   There are a few songs that will likely always remind of 2010 and the ups and downs of our FPIES journey.    This one "Stuck Like Glue" by Sugarland is one of those songs.   So, click on the link and dance with us....

....because no one knows (Little Man) better, no one can make (him) feel so good, no one thought we could....and just when I think I've had enough.....you give me that look, baby....there you go making me feel like a kid....Whutooo whutooo, Stuck like glue. You and me baby we're stuck like glue. Whutooo whutooo....Some days you know I wanna just give up. When it doesn't matter who's right, thought about it all night had enough, You give me that look...You do that thing that makes me laugh....just like that....there you making me feel like a kid....Melodies that get stuck, Up in your head whutooo whutooo.  Up in your head, whutooo whutooo...... Stuck like glue, you and me together, it's all I wanna do.....

I hope you enjoy it as much as Little Man, his brothers and I do.   

Happy New Year!

Biopsy Results!

This week we found out the biopsy results, and confirmation of true gut healing for Little Man!!  We are so excited at this prospect of a "reset" button on the last many months of trying to play catch up since corn fail (and before).

Inflammation healed, villous atrophy gone.  Christmas wish (and many months of prayers), answered.

We now have a head start, a real chance at passing foods, at expanding his tiny menu -- or just staying still with the formula that has sustained him since stopping the Neocate.   The only catch is, he needs some vitamins to fill in what his hemp milk formula is missing.   He needs a multivitamin/mineral supplement.  Having this will complete his daily needs -- to assure us his nutrition during breaks, during trials, during reactions, for proper growth and development.    Taking away the Neocate and starting him on hemp milk formula stopped the daily assault on his gut, and his daily pain and random vomiting but the damage of corn had been done, other food trials did and left their "damage" and then there is the villous atrophy (from soy?, we still are not sure).   But, taking away the Neocate also took away our complete vitamins/minerals.   This was supposed to be filled in my a tiny menu- but we couldn't get to a tiny menu.    So, next steps....to trial a vitamin.   My searching has continued and thanks to some great dietitians- we have found one that is the "lesser of all evils"...apparently a 100% corn and corn derivative free vitamin does not exist.   We found one that is worth trialing....to give him that complete component he needs in his diet.  

But, trialing a vitamin with corn derivatives does not come without it's concerns.  We are reminded of how quickly, and how severely he reacted to a Vit.C derived from tapioca (a previous fail from bloody dumping diarrhea resulting in acidosis), such a minute amount hit his system so hard and we landed in the hospital being evaluated for a blood transfusion.   Not a lesson easily forgotten.....

But he needs the vitamin....

Our GI has assured us that we will do a 2 week trial of the vitamin (as we know trace amounts will potentially bring on a myriad of symptoms and not a full "reaction" of violent vomiting and diarrhea, lethargy.  The plan is to push through the symptoms, noting them as we go and if they do not subside, build or continue to be worrisome- she will re scope him to be sure we haven't lost his baseline of NO inflammation and NO villous atrophy before we continue on the vitamin or onto food trials.    The vitamin was ordered yesterday, will arrive at the end of the week, we will start it Monday. 

But in the meantime.....we are weaning off TPN and we plan to go home from the hospital (after 25days) tomorrow!!  We are SO ready to have him home again, to enjoy his baseline, to re-establish a "home" routine.  

Little Man has been weaning off his TPN while reintroducing his hemp milk formula - which he has been taking really well.  In fact, he has started to ask for his "bat-ba", he also asks for his "night" (translation blanket) when he wants his bottle, or a nap.   He has learned other words such as chair, door, car, bye, thank you.  He has added knowing where his eyes, ears, mouth, tougne, nose, feet, and belly are.   He adapted to hospital life and we made the best of it, taking any moments as teaching moments and play time.  His brothers visited when possible.  We will all be very glad to have him home....we were able to take him home for 4hrs on Christmas Eve and on Saturday and Sunday evening as well - he LOVED every second of it! 

We are ready to close the door on 2010, and greet 2011 with optimism and health.    May the New Year bring us (all FPIES families) a renewed FPIES path!

Santa Claus comes tonight....

Little Man had his follow up upper endoscopy today.   Two weeks on TPN and gut rest and the GI doctor saw good, great signs of gut healing!   The inflammation he has had (off and on or continuous) for 8+mo. is now GONE (visually) and the villous atrophy has repaired itself greatly (visually).   This was to the naked, trained eye of the GI doctor; the biopsy's she took will tell the rest of the story....but those will not be back until Monday due to the holiday weekend.  

We got the news that Little Man will need to stay in the hospital over the weekend, and through next week, to continue the TPN full strength for a few more days (until biospy results are posted), and then wean back onto his hemp formula.  The change will be the addition of the multivitamin (intended for TPN solutions) added in to his daily regimen.  His hemp milk formula has many vitamins and minerals but is missing some, and since we have not (and do not know when) been able to increase his diet to provide for those vitamins and minerals; it is essential that we find a multivitamin that he can tolerate.  I have searched every vitamin supplier I can find and can not find one that fits his needs and avoids his allergens.    This one is the closest, and since designed for TPN (dissolvable) solutions, there is hope it can be something his body will not sensitize to.  As with everything else, only time with tell- it will be a trial.  We discussed that it would be a 2week trial, we would push through minor symptoms and if there is questionable symptoms at the end of the 2weeks, he would be re-scoped to be sure we haven't lost his baseline before proceeding.  

The villous atrophy is what scares me with proceeding...the silent damage that was being done- and we don't know what from.   Was it soy?  Was it from corn and his inflammation never healed?  Was it millet?  Is millet too closely related to wheat?   Is it a small bowel bacterial overgrowth? (aspirates were taken for that).    Without knowing for sure, can we really just push through small symptoms?  Are we risking villous atrophy again?   All questions only time will tell....and Faith.   Faith that I will continue to be led in the right directions with my instincts, instincts that connect me to my little man like nothing I've ever experienced.  I have no doubt where this Gift comes from. 

Tonight, we would celebrate this great news of healing-- but we are a little busy preparing for another celebration.   We will celebrate our Christmas early, tomorrow.  Both Little Man's daddy and I work on Christmas Day....we both have been on FMLA so much over the past year (most recently the past 7weeks) and Little man is stable, with my sisters here to help with him and his brothers, so we can honor our commitments to our jobs.   To the fellow co-workers who have given so much of their own time to make up for our many absences.

So, Santa Claus comes tonight....he has already visited, his elves work fast when little boys slip into slumber.   The best Christmas present will not be under the tree....we arranged for Little man to have a pass for 4hrs tomorrow morning so our family can have our Chirstmas celebration, together....even if just for a few hours.   It will all be part of the surprise for his brothers tomorrow morning.   They will wake up to presents under the tree and this letter, from Santa:

Dear Meyer Boys,
Desperate times call for desperate measures. Not many kids understand that I start delivering presents
the morning of Christmas Eve. Where it is Christmas Eve for you it is Christmas Day to others. I know both your mom and dad will be working Christmas day, so I made a little detour to your house. I want you to know that I have kept up on how little Sam is doing. Although little boys can always be better, the Meyer boys are some of the best behaved boys I know. Your strength, courage, and loyalty to your little brother shows the depth of love you have for him. It is not easy to have brothers sometimes, but it would be a very lonely place without them. So I have made your Christmas Eve into Christmas Day. Have a very Merry Christmas and a Happy New Year.
Love,
St. Nicholas (aka Santa Claus)

Merry Christmas Everyone!

My Christmas wish....

We have been in the hospital 2 full weeks now; we will be here for 1 more week (3 weeks total) before we discuss discharge plans and next steps.   Yes, that means we will be here over Christmas.   It doesn't surprise me.  We were on the road, traveling back from PA- having just received his FPIES diagnosis at CHOP on his 1yr. birthday.   We celebrated our 13yr anniversary in the hospital with Little Man after a tapioca reaction, we celebrated my birthday and Halloween with another hospital admission for a blood transfusion.  We avoided a hospital stay for Thanksgiving- in fact, we had a wonderfully quiet and family centered Thanksgiving.   But now, here we are again- facing down another holiday to be celebrated in the hospital.   

We spent the first week adding components to his TPN: dextrose, amino acids, Iron Infusion, then fats and finally vitamins/minerals.   His body showed us weird "off baseline" symptoms at every addition- nothing serious enough for "red flags" so, of course we pressed on....he needs this gut rest with concentrated nutrition.   It is our ultimate hope, pray, wish that this is what he will need to "reset" some of the wrong steps we have taken on this journey....a fresh start for better management of this allergy. 

The second week we spent working him up to 100% of his needs from the TPN.  He has still been able to drink his plain, unflavored, original Hemp milk - as "icing on the cake" and takes in 200-400calories a day, as his "icing".   We have seen good weight gains, but at this point still too early to calculate how much of that is "true" weight gain, or "dry" weight as he is very well hydrated from the TPN solution.   I have good hopes though that some is true weight gain, and that it not only means he is doing some catch up time (from concentrated nutrition bypassing his inflamed gut) but also that his villi have repaired/rebuilt themselves enough that they aren't stealing all the nutrients. 

Little man has received 5 IV Iron infusions, initially his body responded really well to it by bringing up his hemoglobin a whole point (from 6 to 7 now).   His body does seem to over-react to the infusion though, he becomes hyper (crazy hyper) for the infusion day and following day; then he gets a "strung out" look, pallor look to him the day before he is due for the next infusion.   I have yet to figure out if it means anything, or if it is "just" a side effect.   He has 5 treatments to go, so hopefully it isn't something that continues to build.  

His scope is on Thursday and everyone is anxious for that.  Biopsy results won't be analyzed/read until Monday due to the holiday weekend; so we will wait patiently (some more) and begin cycling his TPN so he can be weaned off (and hopefully be home by this time next week!)

My Christmas wish?   Gut healing, no inflammation visual or on biopsy; repaired and restored intestinal villi and true weight gain.  Oh, and a healthier 2011! 

New Guidelines for Diagnosis and Management of Food Allergy in the United States

There has been a release from the National Institute of Allergy and Infectious Disease, a component of the National Institute of Health.  The guidelines were developed over a 2yr.period with combined efforts from an Expert Panel from 34 professional organizations, federal agencies,and patient advocacy groups.  The full report can be viewed here: The Journal of Allergy and Clinical Immunology 

The full report is 84 pages long.   The first glance I took of it, of course I skipped through to where it mentions FPIES.  Yes, that is right- it gives an entire section for FPIES.   It is a very real diagnosis and having it mentioned here in the new guidelines for food allergies is a big step for the future of these children affected by it.   But the report is, of course, not limited to FPIES.   I have begun to read through it and am impressed with the information it provides, updated information that is needed as this country's food allergies are on the rise daily.   In fact, that is one of the reasons they developed the new guidelines. 

The first thing I notice is in Section 2 (pg7): Definitions   "A food allergy is defined as an adverse health effect arising from a specific immune response that occurs reproducibly on exposure to a given food."  This is updated terminology to address both IgE and Non-IgE food allergies.  Typical immediate onset allergies are IgE, that is IgE-mediated mechanisms are involved.  Non-IgE are delayed and thought to typically involve cellular mechanisms.  "The terms Allergy and Allergic Disease are broadly encompassing and include clinical conditions associated with altered immunologic reactivity that may be either IgE mediated or non-IgE mediated".

It goes on to describe terms such as Food Allergen, this addresses foods or specific ingredients and components in a food (typically proteins).  It also addresses cross-reactivity definition and significance in food allergy.  Food oils are considered low allergenicity if virtually all food proteins have been removed in processing (note low, not non-allergenicity). 

I am pleased to see that there is a lot of language in this report to describe diagnosing food allergy- not limited to serum levels of IgE, but in response to tried-and-true elimination and challenge of the foods.  Things to be considered is the level of reaction, the quality of life - the balance of benefit and harm..."identification and avoidance of foods responsible for food-induced allergic reactions improve quality of life and potentially prevent life-threatening reactions and disorders.  With the appropriate evaluation, there is a low risk of erroneously diagnosing someone as food allergic and adversely affecting his or her nutritional well-being and social interactions".  

This is an important moving forward (and over due) step in the world of Food Allergy.  And as not only a mom of an FPIES child, but a Dietetic professional as well, this is of critical importance -- to properly recognize, diagnosis and treat food allergy's not only so that diets are not over restrictive but also, on the other end of the spectrum,  so that proper identification to symptoms can be made, and treated with removal of the offending food(s).   This is important because as of now, allergy's are only considered "true" if they produce an IgE and immediate immunological response.   These guidelines are helping to redefine, and hopefully reshape how adverse reactions to foods are viewed, and thus diagnosed and treated.  It is very important to be able to treat so many growing number of protein intolerant infants and toddlers, to have recognition that not all food allergies are IgE response, that Non-IgE food allergy's exist, are prevalent and a significant adverse health effect on children suffering from them.

Food Protein Induced Enterocolitis (FPIES) and Food Protein induced allergic proctocolitis (AP) are initially described on the bottom of page 8. 

A table (in section 4, pg 20) for "Diagnosis of food allergy: when should a food allergy be suspected?" and includes delayed GI reactions as well as other cutaneous, ocular, and respiratory delayed symptoms (as part of the cascade of symptoms)- it should be noted that the expert panel notes that food allergy rarely causes isolated respiratory symptoms such as asthma and allergic rhinitis.  

Included in section 4 (page 22) is an outline for Differential for Diagnosis of Food Allergy, which include addressing adverse reactions to foods that are not allergenic in origin. 

A few pages later (page 27) is the discussion on Diagnosis of non-IgE-mediated immunologic adverse reactions to food.  This is where FPIES and AP are described as Guideline for diagnosis, rationale and the balance of benefit and harms. It is a good synopsis of the research on FPIES thus far.   I am happy to see it has it's place here and described so well for the clinicians.  There are additional research articles on FPIES, and additional research is being done to further understand this diagnosis, and ultimately (hopefully) find better treatment options to provide to the families struggling with a severe protein intolerant child. 

I am still reading through the rest of the report, it covers a lot of new language, encompasses newer research, clarifies IgE reactions.   In general, it is well written report and hopeful that with FPIES and AP being included; it will begin to be in the differential diagnosis for more kids presenting to the doctors offices with feeding intolerance's. 

Not just an intolerance....

When I first began to learn about FPIES, there is a lot of language about it being an intolerance....a protein intolerancece.   Yes, it fits in protein intolerance category.   But even protein intolerance is not "just" an intolerance.  

An intolerance (such as lactose or fructose intolerance) is a lack of tolerance, the body lacks sufficient enzymes or digesting particles to sufficiently breakdown components of the foods for proper digestion.   This causes pain, cramping, diarrhea, constipation, and general dysbiosis and possibly some malabsorption as the foods pass too quickly and improperly digested through the GI tract.  It is a limited response, and it does not cause a systemic allergic reaction in the body. 

FPIES is not just an intolerance.   It is an allergy, not an antibody producing allergy but it is a full system response -- ask any FPIES mom....it is not restricted to "just" the gut.   It is an allergy of the gut but it is not limited to the gut.   The allergic response is a gut response but the allergy is system wide.   There is a brain-gut connection, recent years research has come a long way to show more and more connections to the brain-gut connection for such things as Autism, Crohns, Fibromyalgia, and....allergies.   Maybe that is the only connection....but why, in a reaction (before or after or during) does my little man experience eczema, asthma, disturbed sleep, hyperactivity, mottling of the skin, edema/puffiness, etc??   This is not just an intolerance.

Celiac disease is an allergy to gluten.   FPIES is an allergy to proteins- any proteins can fall in this category.   Gluten proteins in Celiac disease cause villi damage in the small intestine, resulting in atrophy of the villi and malabsorption of the nutrients.   Mild villious atrophy, inflammation, gastritis, colitis are all seen in FPIES- it is why it is so named Enterocolitis (entire intestines are affected).

A good article was shared today from http://www.celiac.com/: Unglued:The Sticky Truth About Wheat Dairy Corn and Soy and also discusses the malabsorption of nutrients in response to allergy from proteins.  

Little Man is receiving nutrition via IV- his calories, protein, fats, and carbohydrate plus vitamins and minerals are going into his body directly into his bloodstream.  He has villous atrophy and has been unable to absorb his nutrients sufficiently.  He also has inflammation, furthering his malabsorption of nutrients.  We anticipate this to heal his intestines so he can once again have the chance to absorb nutrients properly, and hopefully begin to pass more foods to include in his tiny menu.   His IV nutrition has corn derivatives in it.  He is allergic to corn, has confirmed FPIES trigger response to corn.    Dextrose is derived from corn.   Mannitol in his multivitamin is corn derived.  These are broken down, hydrolyzed.   These are not going in the gut, but through the vein.   FPIES is thought to be a T cell response.   T cells are the gate keepers....are we sneaking by the gate keepers by not going through the gut?  I want to believe we can....but something tells me we are not completely.   My main hope right now is that we are sneaking by enough and that his body doesn't continue to build this response we have been seeing, that it can "tolerate" it long enough to continue to provide him the other nutrients he needs - giving his gut the rest it needs. 

Dextrose and Mannitol are hydrolyzed to be broken down to be very low protein....FPIES triggers recognize trace proteins, cross contamination of proteins.   This is understood in Celiac disease in the medical community (although still new, it is recognized and understood- why not FPIES?).  

Nutramagin is a formula that has hydrolyzed whey proteins (dairy), less allergenic dairy proteins.  Little man could not tolerate (and had full blown vomiting reactions from this formula, on two separate trials) hydrolyzed dairy proteins.   We know his dairy trigger is sensitive (his vomit covered my kitchen floor from sucking on a McD's fry that has dairy in it's seasoning).   We know he can not tolerate even trace amounts of dairy protein, and we don't even try to give him something that has a chance of trace or cross contamination of dairy protein in it.    Dairy intolerance, dairy allergy is better understood than a corn allergy. 

Corn syrup solids are broken down to not contain corn proteins, but trace proteins can remain.  Corn syrup solids were still causing random vomiting and ongoing gut inflammation for my little man.  Citric acid induces violent vomiting.   Gypsum board (sheetrock made from corn derivatives) caused a full blown vomiting reaction.  Same for cardboard, and paper.  His corn allergy is as sensitive as a celiac's allergy to gluten.  Would a Celiac be able to tolerate wheat proteins (even broken down or hydrolyzed) in their IV? 

Little man is primarily doing well, he is getting nutrition he needs, he is getting the only treatment plan that is an option left for him at this point in the road.  The side affects this may cause (even re sensitizing his body to corn) may have to be par for the coarse, the risks outweigh the benefits.....if it is healing his gut.  I can't help but worry....what else is going on in his body in the meantime?

Ignorance is bliss....

I will admit.  I too would rather live in Pollyannaville....I prefer it.  I prefer my world to be happy and glass-half-full kind.  I do try to look at everyone perspectives and, although it is easier to live in Pollyannaville with ignorance -- with FPIES, it is not bliss and it is not better.  

It was brought to my attention yesterday that someone thought that an Allergen-friendly recipe for a cookie was comical.  It is a recipe for: Inoffensive Cookies: Recipe for Gluten Free, Dairy Free, Egg Free, Soy Free, Nut Free, Fructose Free Cookies.   This author provided her commentary for the well-thought out recipe someone provided.   To her, it was comical that someone would need to follow such restrictions.  Even going as far as to say that if they had to follow these restrictions, that she felt sorry for those people but her comments were anything but sympathetic.   They are condescending and even ignorant.  Her opinion doesn't offend me in the least, it is her opinion.  She is entitled to it and I always welcome people to voice their opinion...how else can we learn?  How else can we see just how much we need to teach others. 

Her opinions do not offend me.  Her inaccuracies do.  Such as:  "if someone can't have gluten, dairy, eggs, soy, nuts or fructose, then they probably have more to worry about than baking cookies".  Well, you're right about that, but does that mean they don't deserve a cookie too? She goes on to give the recipe (thanks for sharing because I think I could use this in a modified way for my son soon), stating "The comments in the parentheses are mine. If you are offended by my comments, then you need to get a sense of humor. Or you desperately need some Inoffensive Cookies."

Inoffensive Cookie Recipe (for people who can't eat squat)


1/4 cup plus 1 tablespoon golden flaxseed meal (we're off to a good start)


1/2 cup dairy-free, soy-free vegetable shortening (I can probably find that)  This would be her first ignorant comment....dairy and soy free vegetable shortening is not easy to find....where do you think the vegetable comes from?  


1 cup xylitol birch sugar (okie dokie) Really, because you have to special order this.  I know, I've checked in hopes that it is something my son could eventually tolerate since he can not have anything from corn or tapioca.


1 teaspoon pure vanilla extract (ahhh... something I have!) No, you probably don't....ignorance again- pure, meaning free from soy, dairy,corn...not just one that says "pure" on the package.


1/2 cup plus 1 tablespoon Authentic Foods GF Classical Blend flour (I'll put it on my list)


1/4 teaspoon xanthan gum or guar gum (I don't think they mean chewing gum).  She's right- they don't.  And you'll have to be careful because xanthum gum can be from either corn or soy.


1/2 teaspoon baking soda (I know what this is)


1/2 teaspoon double-acting baking powder (I know what this is too). Yes, but again- you would never guess that there are additives such as corn in baking powder.  


1/4 teaspoon cinnamon (this is getting better by the minute)


1/4 teaspoon fine sea salt or table salt (I better stick to table salt) If you did, you'd be adding corn to your recipe (not that this recipe claims to be corn free)- but just to point out it's not as simple as it may look, or as she appears to think.  It's not as simple to make fun of, because it is simply not funny.


1 1/2 cups gluten-free old-fashioned oats (they are starting to confuse me again) Well, let me educate you then.  Oats are contaminated with gluten in this country...it comes from the growing stages as well as the production of it.   A gluten intolerant person will react to gluten in the size of a crumb.  This reaction will begin to attack the small intestine villi, which will in turn result in malabsorption of nutrients, which in turn will result in more villi being flattened from poor nutrient absorption....all from minute amounts.  So, assuring it is gluten free (usually from another country- such as Irish Oats) is essential for the health of a gluten intolerant individual. 


1 and 1/4 cup dairy-free, soy-free, gluten-free chocolate chips (they make that?) Yes, they do. Enjoy Life is one of such brands. 
Preheat oven to 350 degrees.

Line two baking sheets with parchment paper.
Combine 1 tablespoon of flaxseed meal with 3 tablespoons of warm water, mixing well. Set aside. This is your "flax egg" (I'm so glad to know that).

In the bowl of a stand mixer fitted with a paddle attachment (I'm confused enough as it is), cream the shortening, and the birch sugar, mixing on medium speed for about 3 minutes.

Add the vanilla extract and the flax egg (that's the stuff you made in the first step, I guess). Mix about 30 seconds on low speed until combined.


In a separate bowl, whisk together flour, the remaining 1/4 cup flaxseed meal, gum (remember, this isn't the gum you have in your mouth), baking soda, baking powder, cinnamon, and salt (I'm beat!).


Add oats and mix. Add dry mixture to stand mixer bowl, and mix on low speed until combined.

Add the chocolate chips (hopefully you didn't eat them all while mixing the rest of the stuff), mixing on lowest
possible speed until just combined.

Using a 2 tablespoon scoop (can't I just estimate?), place dough balls on a baking sheet and flatten them slightly (I will flatten them, I promise).

Bake in the center of the oven 13 minutes, until lightly golden. Let cookies cool for about 5 minutes before transferring to a cooling rack (then transfer to your mouth).

Source for the ridiculous cookie recipe: http://www.wholeliving.com/

This is the end of her article.  She was leaving an area open for comments but has shut it down, after a few fellow FPIES mom's attempted to leave her some feedback to her article.  These comments were not negative, just informative and raising awareness to the people (in our case CHILDREN, who by the way go through enough in their lives, no one deserves a cookie more) who may come across this article.   I have included one comment from Mama of B (that so far has escaped her from deleting).
Mama to the B 12/13/2010


It is sad that you have to delete comments because they refute what you are saying. Our comments were very polite and in a very rude situation. I suggest that you think about the people who will come across your article in a search-- people with severe food allergies or parents of children with severe food allergies. The title alone would cause it to come up in such a search. As a writer, I am shocked that you did not consider your audience. I really hope it was not your intent for people who are actually searching for such recipes to come across this article. That would be pretty mean and I would hate to think that anyone would be that harsh. There is no humor that is worth that meanness. If you would like more information about FPIES and other severe allergic conditions, since you do not seem to understand them, I hope that you will do a little bit more research before judging this community. www.kidswithfoodallergies.com is an excellent place to start.

I'm not sure why this informative language would need to be deleted from her post. I believe in the good in people, so lets just assume she wasn't meaning to offend by her jest....then why not leave the comments given on her post to raise awareness? I will let the reader decide. I simply wanted to share that ignorance is bliss...and I don't blame her for being ignorant about food allergy's....many who do not need to include such restrictive dietary habits in their everyday just for the health and well being of themselves or their loved ones simply do not think that food could also be poison. My thinking has been forever changed by this diagnosis and I do not have the luxury of thinking something like this article/commentary is comical.

Failure to Thrive...

We've had failure to grow and gain weight but we had avoided the "big" FTT....these words were uttered yesterday by the Pediatric consultant.   Another mom's words echo through me when I hear FTT: "failure to thrive may as well being saying failure to be a mom".   I don't know if it is because I am in dietetics field or if all mom's feel this hit as hard but words like "malnourishment, undernourished, failure to thrive", etc mean more than just diagnosis language to me.   To me, they make me feel like I am being blamed for his nutrition...when in all actuality- I think he's done well for everything he has gone through.   His iron is low, his weights are low but steady.  All his other labs are doing good, he isn't as "sick" as one would think reading his chart.  That isn't to say that he won't be if his current issues aren't treated.  Villous atrophy and gut inflammation will lead to malabsorption of nutrients - there malabsorption is a better term....at least it says it for what it is...his illness is doing this to his body- we are not.   We are in fact, doing the opposite- going to great lengths to keep him from becoming more ill, suffering more ill effects from his allergy. 

His formula kept him in daily pain and disturbances to his system and random vomiting every few days.  I made him a formula that took this daily pain (that had been going on for most of his life) away, but with that I also took away assurances of some micro nutrients.  The formula is adequate in calories, protein, fats and carbohydrates as well as many other nutrients; but it lacks about a dozen or so of the many micro nutrients we need in a complete diet (although I challenge you to find a typical 18mo.old who meets all these micro nutrients needs daily, but I digress- Little Man isn't typical).  Adding fruits and veggies, a meat and a grain- building a tiny menu, would get him these missing micro nutrients....but he has not tolerated food introductions.  Giving him a vitamin may fill in these gaps, but he can not tolerate the additives in most (all?) vitamins- giving him foods and vitamins that his body rejects puts the very real possibility of making him more sick; and thus less able to absorb nutrients from even the formula he gets daily.  The formula that is adequate in calories, and yet he doesn't gain great strides of weight (gut inflammation prevents this).  The formula that is adequate in iron and yet his iron has only continued to fall (villous atrophy contributed to this- recently and likely a year ago as well, initially causing the low iron that set him behind from the beginning stages).  

Today, little man received another dose of IV iron infusion.  This will continue 2x/week for the next few weeks.  He continues on his plain hemp milk, and his TPN is built up with all ingredients to nourish his body and repair his small intestinal villi; so we will continue with this recipe for the next 2weeks and then the plans are to do another endoscopy to check on his villi; and proceed from there depending on the findings.  The hope is that the inflammation will be healed and the villi will be rebuilt so that he can go back to his Hemp milk formula, peaches and millet and re-begin food trials to finding that tiny menu.   

Little man is thriving: he plays wildly (a PICC line doesn't slow him down- it only speeds up his parents following behind him tirelessly so his lines don't get tangled, caught or pulled).   He builds blocks, puts together puzzles, processes language and follows directions, makes friends, gives "high-5's" and kisses, and learns more words everyday.  This week he has added "ice", "car", "love you", "this" to his vocabulary.   For 18mo., I still wonder if he isn't a little behind for language- but he doesn't get as much oral motor development so, again- all things considered- he is doing really well for what he has had to overcome.

PICC and TPN

The PICC line placement went well on Monday morning.  He tolerated the procedure well and has been allowed to have his plain Hemp milk instead of being strictly NPO, so that helped with the hunger pains he was feeling when he woke up.   He isn't drinking a lot of his hemp milk because his IV line gives him enough fluids for him to not be as thirsty.   But at least he gets to still have his bottle for comfort and oral motor skills.

The plan is to build up his TPN (total parental nutrition) each day adding a new ingredient component...thanks to the help of our great Dietitians that helped everyone to see this was a necessary -- although slow -- process to go through for him. It is exactly what I knew he needed, and although it will be slow, I feel it is essential for him.   One ingredient at a time for 24hrs at a time, monitor how his body handles it and assess symptoms as we proceed, and move to next steps the next 24hrs. 

Monday was Dextrose, so carbohydrate source.   I am not sure how his body is truly tolerating the dextrose but it is essential so the symptoms may have to be a "risk vs. benefit" scenario.  If we are once again, sensitizing his body to corn derivatives (which I suspect  we are)- we will just have to consider 18mo. our last corn ingestion's and remember this date as we look at when we will challenge corn....which at this point, I have no interest in doing it before he is 3 anyway.  Once we adapt to a diet of safe foods for him- I have little interest in challenging that for the minimum of 18mo. window that is felt to be the Tcell "memory", or life.  This allergy does not build up antibodies as in a typical allergy.   The mechanism is thought to be T cell.   Tcells "shed" their memory every 12-18mo.(from what I understand); so this along with gut maturity is thought to be the criteria for time period of avoidance for known triggers.   Symptoms that I am worried about?  Hyperactivity, flushing, mottling, disturbed sleep, decreased appetite, and yesterday- vomiting and loose stools (more on that later).  

Monday also brought the news that his hemoglobin is back down to 6 again (blood transfusion had brought it up to 10 from 5 just a little over one month ago).   Getting him nutrition, repairing his gut villi, and re-establishing a good supply of iron in his little body are the main goals in his health right now; and this just bumped everything up a notch on the urgency scale.   We are right where we need to be....in the hospital, getting IV nutrition, getting monitored for signs and symptoms along the way.  He will also have a 4th scope at some point to assess how this is helping, and hopefully get a better grasp on how he is doing and where we are going after so long being "on the edge". 

Tuesday was the start of Amino acids (protein) and with the news of his hemoglobin decline; iron was infused in at the same time as well.   He will received IV iron infusion two times a week now for the next few weeks; this will help rebuild his own stores, that have been so low for so long...finally.   The IV iron has a risk of anaphalxis, so he was monitored closely for the first 20min but presented no anaphalyxis reactions.   Although, an hour went by and he began to display some concerning symptoms (face flushing, red eyes, and hyperactivity).  This all subsided within an hour though and he went to sleep well.  Unfortunately that sleep did not last, a few hours later he was awake and as I was preparing his bottle - he coughed and then came the vomit.   It was not just spit up, it was not projectile, it was forceful but not violent and not "garden hose" amounts.  However, there was flecks of brown tinged blood in it.   This was concerning.  It did not continue and he finally ate some hemp milk and calmed down but did not go back to sleep for another 4hrs.  It was a long night.  He was uncomfortable, tylenol did seem to help some with that.   He finally slept a bit from 5-7am and woke up happy and rested-appearing.  He actively played all morning and took a nice long morning nap and even squeezed in a late afternoon slumber.  He is catching up on sleep and looking better. 

Wednesday (today) brings the addition of Lipids (fat).  So, now his TPN has: Dextrose, Amino Acids, and Lipids, plus an acid reducer (because of eating less).   Tomorrow will be a multivitamin.  A multivitamin is an important step but it also does not come without it's own risks as it has ingredients that he would possibly react to orally.  But, this is through the IV....

This mechanism I still do not fully understand, the T cell response and the degree of the allergy.   It is a gut allergy but T cells are all over the body.  Do the Tcells of the gut only recognize the allergenic food?  Then explain atopy patch testing....where a food substance is placed on the back under a metal disk where it sits for 48-72hrs to see if the skin responds (being a delayed hypersensitivity reaction).  It is not 100% accurate testing but it gives a guide.  We have not yet done ATP, and not sure if we will since the places we have been do not offer it.  So, the question remains....will his body respond to his known triggers in the IV?  The dextrose is from corn, but it is hydrolyzed down....and yet corn allergic patients have had reactions through IV's before, and yet some do not....it is like everything else -- the only way to know is to know.  It's all about the trials....

Overwhelmed but....

Overwhelmed and scared, nervous, anxious and yet calm about Little Man's upcoming procedure tomorrow.  He will have a PICC line placed for TPN (total parental nutrition) to bypass his gut, for gut rest and restore his villous atrophy and heal the inflammation.  We are hopeful this could be our Christmas gift this year....it is after all our only wish, the whole year.   We know it will not erase his FPIES, we are coping with his FPIES.   But what we would like to see is a better course of healing and action for next steps....we can't seem to get to those next steps because of the vicious cycles we keep getting trapped in.  So, gut rest may get us past these cycles and onto next steps....and/or it will offer additional clues as to why we have kept getting stuck.  

I was feeling overwhelmed this morning, as I think about the day tomorrow...and the weeks to follow.   And yet, a calm and peace came over me...a little bit later I read a poem that puts in words how that peace washes over me, and what helps me to go on...it goes deeper than my own strength, that I know. 

He Keeps Me Going

by Betty Purser Patten

It's God that keeps me going

When my world just falls apart;

It's He who lifts my spirit

When I grow faint in my heart.

His love always sustains me

In my trials and distress;

I don't think I could make it

Without God, I must confess.

It is not my cup He fills up-

It's the bucket that I bring.

It's not the song He gives me -
It's the symphony to sing.

It's no the lamp He offers -

It's a floodlight as I walk.

It is not a voice that whispers -

But a heart-to-heart heard talk.

It's not just showers of blessings

Teeming riches does He give;

It's God that keeps me going

Every moment that I live.

Without God, I would not have the strength to endure such a difficult thing for a mother -- the need to nourish and feed their child.  Without God, I wouldn't have the instincts that connect me to Little Man that go deeper than anything I've ever encountered; a burning instinct that burned in the pit of my soul more than anything I've ever experienced....without my instincts, I would get overwhelmed and not be able to escape.   Once I started believing and trusting in my instincts, I was no longer so overwhelmed.  

God doesn't fill my cup, he fills my bucket.  He fills it with the beauty of a family that is sticking together, all for Little Man- that is not giving up when it gets tough, we just get tougher.  Two parents that are bonded together in unity of fighting against FPIES, fighting for best treatments and options, and quality of life in the face of a chronic illness.  3 little boys that always think of Little Man's needs, and want to help in any way they can.  A "band of brothers" they are, the bonds they are creating while enduring this journey will bring them closer on a deeper level than anything we could have taught them.  The meaning of love and sacrifice, perseverance and instincts.  The meaning of unconditional love.  My bucket is full.  

It is not a song to sing but a symphony of Awareness.  Of using my voice (He didn't give me this "big" mouth for nothing) and passing along the information learned, of raising awareness for future children with this illness, of raising awareness for the need for support for the family's behind the children with FPIES.  Of being a part of something outside of our own personal FPIES story, to further help other protein intolerant children. 

It's not a lamp He offers but a floodlight....a floodlight in a maze...a floodlight of friends, new friends created in a FPIES support groups, old friends offering words of inspiration and comfort- stepping out of their lives from miles away to reach into ours for a moment to offer us that little glimpse of hope and strength.  A floodlight of family, sisters who give up their lives to move into yours, who are always there when needed.  Family who gives conversations of comfort, and encouragement.  Family who visits and gives the gift of love in their presence, passing their strength in a simple hug.

It is not the voice that whispers, but a heart-to-heart heard talk.  How I can go to sleep with worry on my mind and wake up with conviction of thoughts, and a rested soul.   How, a very real heart-to-heart with close friends can be the words of God spoken to me. 

It's not just showers of blessings- we have received so many blessings.   Is FPIES a blessing in disguise?  Everything is a blessing in life when we know that God is with us and that everything is happening for a reason.   

So, I am overwhelmed that my little man is having a procedure tomorrow morning....I am his mommy and that is my job- to worry about him.  But I have Faith that the roads we have traveled and the one we are on right now, is in His hands.    He keeps me going....

Reset button?

We all, in FPIES world, wish for the reset button.  A "fail" is introduced, sickness prevails, weight loss, oral aversions, reflux pains, eczema flares, etc.   We have been in a vicious cycle with Little Man for many months now.  We find enough pieces to hold up a few sides but then it makes another side fall down.   We found FPIES, we learned how severe and sensitive triggers are, we removed all forms of all of his known triggers and we got him out of daily pain and random vomiting.   Removing daily pain was a BIG step for us, but that meant losing the reliability of an elemental formula, and safe vitamins.  We built him a formula that he could tolerate and gain weight on but he continued to struggle with blood losses and poor absorption of iron on a plant based formula diet, with no Vitamin C. 

Pain and vomiting controlled.  Check.   Adequate calories for growth.  Check.  Introductions (slowly) of a few foods (millet and peaches).  Check.   Blood transfusion to rebuild stores.  Check.   Iron supplement daily. Check.    Soy challenge to begin to add more varied protein sources to his diet for iron.  Check. 

Spiraling begins: Bottom falling out on 4th day of Soy challenge.....villous atrophy and inflammation on scope but happy boy once soy is removed.   Omeprezole is started to help heal inflammation, and help with his empty stomach pain.  Omeprezole brings on it's own set of side effects.  Hemoglobin begins falling again.   We were moving right along....we've hit a vicious cycle that we can't seem to break. 

Hematologist consult yesterday morning.  Long discussions about his need for iron (yes, I know he needs it and we are giving him all the doses his body can tolerate and he doesn't spit out).  He is gaining weight, primarily doing well but his iron is falling again.   It is discussed that this is the villous atrophy and that it is evident it is not healing as fast as we would like it to- to restore the villi to be able to absorb the iron we give him, and supplement him with.   IV iron transfusion therapy is discussed.  He will need 10treatments, 2x/week; starting as soon as possible.  We decide we will start tomorrow.   We are worried about his reaction to it, but it is pointed out..."we have no choices".   Agreed, we are already at the point of TPN discussions; so we are at the "end of the line" for choices/options to get him back on track.   Appointment is set up for IV Iron transfusion therapy for Saturday morning.   We then proceed to the GI doctor's office for a weight check and further discussions on next steps....

IV iron transfusions 2x/week means he will have IV inserted 2x/week for the next month and a half.  GI doctor prefers to have a PICC line placed....if we are going to place a PICC line, then we should also do TPN with that PICC line and see if gut rest with alternative nutrition can get him the "Reset" he needs to get more control of this diagnosis.   Admission for Monday morning is planned for PICC placement and begin TPN.  He will continue to get his IV iron transfusions during this.  We don't know yet how all this will go, or all the details surrounding it.  Honestly, we are still processing it all.   We know he could benefit from the gut rest, and the nutrition.....

One step forward, 3 steps back...

I no sooner finished my post last night and I heard Little Man screaming.   He does often wake around 11pm-12am-ish, but this was earlier and he was not happy.  Most of the time that awakening is due to hunger and he eats and goes back to sleep.   Lately, he's been waking up at around 2am and staying awake for at least an hour and a half before he can settle back into a sleep.  He eats a lot during that time, so hunger again is assumed; or stomach pains (gut inflammation) and he needs to eat to have liquids wash over it before it will "settle" enough for him to go back to a slumber.  

This gut pain also has been happening after nap time.   It's been increasingly occurring over the past 2mo. or so, we think maybe it is from his iron medicine causing an increase in acid and this acid is washing over his inflammation, preventing it from completely healing after reactions.  The GI doctor recommended a trial of omeprezole to help with this - a proton pump inhibitor to take away his stomach acid to avoid having it irritate his intestinal lining. 

Despite having this off and on pains, he has maintained a pretty good baseline for the past month.  But now, we seem to be losing it.  One day will be great, but the next will be bottoming out, followed by a rebounding, and then again a gutter day.   The omeprezole was started last Friday, he had a bottom out day on Saturday but he also drank bathwater on Friday night, so maybe he reacted to that (citric acid in soap = corn), because by Sunday he was great again.   Sunday night, 2nd dose of omeprezole and Monday was an excellent day; so we were hopeful that Saturday's gutter day was indeed from bath soap ingestion.  Then brings on Tuesday and we are in the gutter again.   Lab draw on Tuesday morning doesn't help- this always drains him.  

Lab draw was for a CBC check, how is his hemoglobin/hematocrit holding after the transfusion a month ago?   We did not expect the results we got.   Little man has been doing so well, primarily good moods, even a weight gain and we get the news that his hemoglobin is falling again, down to 8 (normal 10.5-13.5g/dl for his age).  He is on a twice daily dose of iron.  He doesn't seem to be tolerating a second dose if given in the afternoon, so we have to try and get 2 doses in before his naptime.   Unfortunately, we haven't been successful in that daily....and to add to that, he hates it so much- he spits it out if I don't get it back far enough in his throat where he has no choice but to swallow at least part of it.   It's becoming a struggle, and a syringe aversion!  But we know it is essential so we press on.   Missing one dose would have this negative of an effect, than we may need a new plan.  His iron stores have just been too low for too long and his body is not keeping up.  Or he is continuing to malabsorb it since his duodenum is where iron is absorbed and that is where not only his inflammation are but his villous atrophy as well.  I am still trying to process how/why this is happening- how we can't seem to get things on a good track for him.  

Then, last night was day 4 of omeprezole and he was experiencing insomnia....awake, unable to sleep (and WIDE awake for most of the time) from 10:15pm-3:30am!  Thank goodness I wasn't alone, I stayed up with him until 11:30, then woke up little man's daddy....I was so tired and he was no where near going back to sleep!  We went back and forth but Little Man's daddy took the brunt of those shifts as I could hardly even stay awake and Little Man wanted his daddy's cuddles. 

Symptoms of intolerance to this medication are building, and so is my worry about causing him more harm than good.   He needs the help for inflammation healing, the last thing I want is for him to be in unnecessary pain.  But, his labs also revealed neutropenia/leukopenia and tonight he has developed a cough (this happened after the 3rd dose of Prilosec 9mo. ago as well).  He had the insomnia last night, and he has been hyperactive during the day (primarily happy but a tad hyper -esp for him!); his appetite is dropping and he has more constipated stooling.   So far, this symptoms/side effects do not outweigh the potential benefit of intestinal healing.   The most concerning though is that his hemoglobin is dropping.   How do we give him iron supplement with a proton pump inhibitor?  His iron is being absorbed because of the acid his stomach is making to absorb it....until now.   We are once again, trapped in a viscous cycle....

We have a hematology consult tomorrow morning to discuss IV iron therapy; and a weigh-in and check in with the GI doctor.  So, we hope to have some better plans to continue moving forward and break this cycle.  

We gave him half the dose of the omeprezole tonight and I'd better get to bed if tonight will be anything like last night....

FPIES makes simple things complicated...

I imagine this is how it is with any chronic illness but that doesn't make it any easier to cope with sometimes.  He has a chronic illness, an illness that has become complex- why would I expect things to be easy?  Or quick? Or simple? Or uncomplicated?  Maybe it is because when you're having good days, you get a false sense of security.   You celebrate those moments and you live in them for a bit- not even thinking about all the days of hardship behind you or the ones that lay ahead.   But that is a double edged sword too.  Living in the moment, enjoying it for what it is helps cope and appreciate the small things....as long as things continue to go well.   But when things start to compound, or spiral....having been given "normal" or hope, only to have it taken away just seems like a cruel thing.   You have to learn, and accept that nothing is simple in FPIES.

Today, I had a list of things to accomplish...or- try to accomplish.  I had high hopes to actually get a few things done, and even an order to get them done in.  But between the weather and Little Man, there were other plans in store for the day and now I feel myself wondering what did I accomplish today?   I made formula, but only one batch because even though little man's daddy was supposed to be home- he had to go run an errand, which would've been fine if Little Man was anywhere near in a good mood...but he was not happy today and we spent too much of the day trying to figure out why.   Was it the millet porridge last night?  I thought millet is safe but I always find myself questioning almost everything in his tiny menu when he starts to have "issues".  Is it the omeprezole?  Or is it something as "simple" as his teeth. Teething is not "just" teething- we find ourselves dissecting all the symptoms that would otherwise be normal for a baby to display for teething.  But fussiness, screaming, decreased appetite, disturbed sleep, runny diapers, mucous in diapers, etc all can be lead up to reactions symptoms too!  Nothing is simple with FPIES.....

So, I made 1 batch of the formula....will have to get to another batch tomorrow.  Then it was time to run errands.   Errands included a lab check for Little Man (more on that later).  Errands also included researching at our local organic food store for pure vitamins (ie- no corn,dairy,soy,yucca,rice) for Little Man.  I did find a company that is showing some promise but I also want to investigate further if the pharmacy can compound a multivitamin- just of the micronutrients he is not getting in his current hemp milk formula.   With a calorically adequate formula and a source for vitamins; we could take food trials at his pace - SLOWLY, and not stress so much about his nutrition during it all.  But the catch is, regular Multivitamins do not come corn free!  There is either corn in the inactive ingredients, or there is corn in the vitamins themselves!  This has led me to do hours of research, contacting company's for ingredient sources, scouring corn free forums for leads....and only getting disappointed over and over again.   Nothing is simple in FPIES....  

Now, I would much prefer my son get his nutrition from actual food -- vitamins, minerals, protein, fats, carbohydrates, and calories-- right from the source where it was intended to be.  But when you have an over-reactive immune system acting foods and an immature digestive system such as Little Man's where very little food consumed (and none in it's raw form) is able to be consumed without pain, and the potential for an FPIES reaction, you can't "just" give the foods you know should be included in the diet.  And to add to it, having a reaction means inflammation in the gut with weeks of healing, poor weight gain, and stomach pains, with bloody stools;  and now we are also contending with villous atrophy (that is in my head continuously as to where it came from, is it healing? what are we doing wrong? what should we do differently? Is millet safe? Was it the soy? Is it the sunflower oil in his hemp protein powder?  Could it be the peaches?  How could it be the peaches? Are we doing everything we can to help him?....).   Nothing is simple in FPIES....

Finding a treatment plan with an illness that is so little understood, and more often than not, not taken as seriously as it is....especially when you are doing so much at home to help your child to thrive....so they look so good on the outside but their insides are a mess.  Finding doctors to help and to trust your instincts as a mom, to know that you have done countless (ok millions) of hours of your own research on your child's condition so that you are aware of best treatment options.   Driving hours to specialists who are familiar with this little known diagnosis, teaching new doctors more about the illness you have become so familiar with, scheduling appointments, rescheduling appointments when they get sick, leaving messages for doctors- hoping they get the message...and understand it in the context in which you intend it to be received are all part of the everyday agenda of an FPIES parent.  A chronic illness protocol involves a care plan.  A simple run down of the diagnosis, doctors involved, and the treatment plan.   But is a simple run down enough with a diagnosis so many have never even heard of much less can wrap their head around the complexity of?  Nothing is simple in FPIES....

So, today my day involved making formula, running errands, getting formula ingredients specially ordered, looking in to where to get more peaches, researching vitamins, plus all the other "normal" things that keep a mom of four busy (laundry, dishes, groceries, homework, potty training, decorating the Christmas tree, making meals);  and of course worrying about next steps with Little Man...especially after his labs came back in today....

Weight gain!

Little man has been maintaining a baseline for 3 weeks now, with only slight deviations from it.  He continues to have sleep disruption for the past month, pain is accompanied when his stomach is empty and he can't seem to get enough to eat but since his stomach only holds so much at a time- he is awake until he gets enough....usually 1-2hrs in the middle of the night.   We have tried getting more in during the day, we have also tried "dream" feeds- which work some nights but other nights seems to make things worse.  Maybe it helps so that his stomach isn't as empty but it disrupts his normal sleep pattern so he ends up being awake anyway.   He isn't screaming or wide awake in pain, he is just not "settled" for a few hours almost every night.  Sleep, precious sleep.....someday, maybe....

Aside from sleep, he has been doing primarily well and then all of a sudden he started to slide on Friday and by Saturday was an-all-too-familiar-mess.  Wednesday & Thursday's changes were an addition of an extra tablespoon of safflower oil in his formula.  Friday night two things entered his system: 1)bath water that his brothers had put soap in and 2) his new Rx: compounded omeprezole.   Sunday we saw a return back to baseline (thank goodness!) but I was nervous about things getting worse if it was the omeprezole, and little man's daddy was at work Sunday so I skipped that dose; but gave him his dose on Sunday night.  He slept well and woke up singing!  Today was a very good day- lots of giggles, playing well, SINGING, and eating and napping well.  The only worrisome symptom?  Hiccups, twice this morning.   Yes, hiccups- hiccups he only has had when things are not going well in his digestion....but hiccups alone are no reason to stop a medication that could be helping his inflammation finally heal.  

We decided to do the omeprezole trial on the recommendations of the GI doctor, who feels that he is stuck in this cycle of not tolerating food/pain with eating because of unhealed inflammation.  Inflammation that is being washed over by stomach acid, causing irritation.   This makes sense in a few ways: 1) of course a sore can't heal with acid washing over it, and 2) he has had extra acid production in order for his iron supplement to be absorbed.  This is about the time frame we started seeing these back arching, uncomfortable-when-his-stomach-is-empty kind of symptoms, so it makes sense and hopefully is the right fit.  Hopefully his body doesn't have an adverse reaction to the medication before it can do at least some of it's job.   It is specifically compounded to be free of his allergens, so the intolerance to it would be his body not liking the Proton Pump Inhibitor (ie- stopping stomach acid production).  You need stomach acid for digestion, so I am leery of him being on this too long- fixing one problem will just create another.    We will let him guide us, as he has done....we will listen to his body and the symptoms and signals he sends....

The GREAT news of today is his weight check.  We are monitoring his weights closely- it has helped to see how long it takes for his body to re-coop from a reaction, and clues to what is going on with his digestion and absorption of calories taken in.    As I mentioned above, we added a tablespoon of oil (under guidance of our Dietitian) to his formula recipe (he already gets 3Tbsps in 80oz: a very high fat diet right now).  The side effect we should have seen was loose stools, but instead we are getting the opposite.  Side effect noted.  Moving forward.  He needs the extra calories, even if they are just fat calories, to regain some lost weight and begin to make some sort of catch up.  But even more, he needs to show us that his calories in = weight gained; which in turn show us that his atrophy and inflammation are healing and his body is re-cooping well enough to avoid alternative forms of nutrition (TPN=IV nutrition).    So, the scale today gave us good news....10kg!  He is now at his high of 22#!!   Not only that, he gained almost 3grams in 5days!!    We pray next steps allow him to keep this weight gain, while adding to it.   

Peaches continue to go well, and tonight he made big steps (celebrating I guess?!) and accepted some millet porridge fed to him by me, from a spoon.   This little boy has spoon aversion, too many times I fed him food from a spoon that later made him sick.  He prefers to feed himself, but he also has texture aversions (and will not feed himself from the spoon either), and he can not currently tolerate raw forms of food.  So, his peaches are in his mesh feeder or in "dots" (cooked, pureed, piped, frozen dots of peaches) that he can pick up with his fingers or his fork.   So, tonight I made him millet/peach "dots" and put them in the freezer for him to try over the next few days; and since I had fresh millet porridge- I put some aside in a bowl to see if he was willing to trust me and let me feed him.   He was leery at first but he warmed up and took a a few tablespoons worth from me!  I was very proud of him.  He also had a little mug that he asked me to put water in (as I was pouring water into my glass) and I did and he drank it right down and asked for more!  He did this 4 times, drank it down,and didn't spill a drop!  This is A LOT of BIG steps in ONE meal and I am very excited about it.  

Lots of good things to mark the day.  One month ago today, October 29th, he was bottomed out and awaiting a blood transfusion.   Now, November 29th: good weight gain, ate from a spoon, ate millet baby porridge, drank from a cup.   A day to mark on the calendar.  A good day. 

A Year of Thanks.

It was a year ago that our journey started to compound, that it took it's leap from "just" Milk protein intolerance to adding up to so much more....what that would be, we had no idea at this point last year. We had gone from not tolerating Good Start, to lots of throwing up and poor acceptance of baby foods, a hungry baby that wouldn't eat, a baby that was now fighting colic on a regular basis.  

Thanksgiving last year is when I started the supplemental soy bottles, we were going to be traveling for the Holiday weekend and since we knew regular cow's milk formula's were not going to work for our little man, I was ready to try some soy formula with him.  I'm not even sure if I anticipated there to be any problems as two of my other boys who have milk protein intolerance's have tolerated soy.   I remember the trip up north was good (6.5hr drive) and the weekend visit was great.  I remember he didn't eat very well, was refusing the spoon a lot by this point and the only thing he had been taking at home was banana, oatmeal and sweet potatoes and I had brought along the Gerber oatmeal/banana jar food for convenience, but he wasn't especially interested in that either.  He did eat graham crackers and cheerios, and cereal stars well.  I wasn't too alarmed in his poor appetite for his food since it is typical for my boys to get out of sorts and not eat well while we are traveling.  I try not to stress about it, they'll eat when they are hungry and when we are up north visiting- it is visiting the grandparents so I want their visits to be fun.   He took the soy bottles a few times over the weekend and we were trying to use them for on the way home because I did not have anything pumped and he was very,very fussy the whole drive home (had been so happy on the drive up).  I remember it being a very long day and lots of crying, and knowing he was just uncomfortable but not yet associating it with the soy formula.  And I do remember thinking it was from my diet - too many treats over the weekend, as I have IBS and have trouble with fruits,milk, and wheat; that I felt was carrying over into my milk supply and disturbing him.   Now, looking back- it was more likely all the soy.  Especially knowing what we know now about the villous atrophy that just came into our picture after our soy trial.   Villous atrophy causes the body to absorb zero nutrients (at the points where it is affecting the intestines).  I look at Little Man's growth chart and the time from when we started soy to 6weeks after that, he went from in the 40th% down the to in the 20th%.   He also had severely low Vit.D and low iron levels at this time.  This piece of the puzzle is coming more into focus now....villous atrophy from soy protein.   Does Little man have Milk/Soy protein enteropathy and Rice/Corn/Grains FPIES?  Is this why his illness is so complex? 

I take a look back at a year ago today, because we really have come so very far.   A year ago today we were starting our downhill slide with Little man, we were losing our grasp and it was after the holiday season that I knew I had to get more help for him.  It couldn't be "just" milk/soy protein intolerance, it wasn't "just" reflux, he wasn't gaining weight and was starting to lose, his pain was growing daily, his sleep patterns were erratic and his night sleeping was pain filled, he was hungry but wouldn't eat, and he cried and cried and cried. 

Since then, we have done elimination diets and trialed reflux meds, we have ruled out Eosinophilic Esophagitis, and Celiac Disease.   We have had gut rest and changes to amino acid formula.   We have food introductions, and fails that led us closer to the FPIES diagnosis.  We have received help and support from some great Dietitians.  We have traveled half way across the country for a consult with an expert Allergist to confirm the FPIES diagnosis.   We have found a very sensitive trigger (corn) for Little man and moved away from any and all sources of it -- to have the daily pain attack and sleep disruption and random vomiting all STOP.   We have formulated a formula, made with ingredients his body tolerates.  We have been able to add millet and peaches, very slowly, to his diet. He may be failure to grow and gain weight but we have kept him thriving, and growing at his pace.   He is a smart, active, interactive, inquistive, happy, kind, quiet and loving little boy. We have found a very supportive, and knowledgeable GI doctor, in our home hospital, to help us manage this complex, chronic illness and manage it at home.   At home, where we can maintain a quality of life and normalcy of life for Little Man's brothers- despite food trials, hospital stays and diagnostic procedures.

And we have slowly been adding pieces to solving the puzzle that is Little Man. 

We have come a long way, and today on a day of Thanks- we are thankful.

Corn is in Everything!

I have a few corn website resources since we discovered corn being a trigger for Little Man.  I wanted to do a post about it, as I have been finding new resources for corn allergies...and also finding something as reassuring as finding FPIES support groups....that there are other corn allergic people out there, facing the same challenges and obstacles to health. 

The first one I found still has been my biggest "go-to" as she put a lot of work into her webpage to help corn allergic people.  She provides a list of corn derived products, product names that could mean corn....it is at the very least a great list to know which ingredients I need to yield to, and check on....I always check everything for myself.    You can not simply trust a doctor or a pharmacist, or a company customer service representative (no matter how well meaning)....or the ingredient listing.  You need to know the ingredient source of all ingredients.  Corn has many names and many things you wouldn't suspect corn to be a part of, has corn derivites; and many people simply do not recognize this to know.  It is up to you, as the corn allergic person to check ingredients.  Her website is: Corn Allergens

The next one I came across is: Corn free foods blog
This is an active blog and has provided some eye opening topics, discussions, articles.  I follow this blog daily. 

Another good blog to follow is: Live Corn free.  Visit this site to sign a petition to get corn added in the top 8 Allergens.

Another one I just found is appropriatly named: a Zillion Uses for Corn.  It is a quick-read-great eye opener for just how many things corn are in (wish I would have found it when I spent a few hours researching why Little man kept reacting to the sheetrock he was putting in his mouth, or the books he was eating!)...paper and gypsum board have corn in them!!

An article shared to me shed some light on why corn is in everything, it is: http://www.abmf.com/news/nabitor It is good to know why it is in everything because then you know when to suspect it might be in something. In short, it is a mold-inhibitor...so a preservative (for food and non-food).

There are many more, and the list grows.  I have started a corn resources section on the side of my blog for those following that also have to worry about corn for their little ones (and my place to keep it all organized!). 

Little Mans corn intolerance is quite sensitive.  I get worried when I wonder if he'll ever outgrow it...being so sensitive to it and us taking so long to discover it, his last corn ingestions were in August, but then he did have an accidental ingestion, of sheetrock (we really need to get our basement finished - we started the remodel of the walls before Little man was born but we haven't had the time or money to finish mud/tape/painting it!).  Since his anemia is better, he doesn't have the PICA he has had in the past so his sheet-rocking seeking obsession isn't as bad.   And since the last time he accidently ingested it, he hasn't tried again -- maybe he finally associated that ingestion with his reaction.

Little man and his Mudpies

Mudpies = big brothers.   Little man has been enjoying his big brothers, even more now that he is not in pain or too fatigued to play.   Big brothers appreciate being able to have their little brother at home (and not in the hospital).   Little Man had an appointment follow up with the GI doctor yesterday, his biggest brother was aware of it and also was aware that it might mean a hospital stay for him.   He was pretty happy to see little man be at home yesterday when they got home from school!  

Little man may need an alternative form of nutrition if we can't get him over this hump we've been stuck in for months.   Moving away from the amino acid formula's stopped corn from assaulting his system and took away his daily pain and random vomiting.  He has been eating better (going from 20-30oz.Neocate to 50-60oz Hemp milk formula) and we have been able to give him a few safe foods (millet puffs and peaches) to practice his oral motor skills and give him a "snack" while we are eating, so he feels included, and we can enjoy mealtimes as a family a little more again.   We only give him his millet puffs and peaches in very small amounts, we have had to build up to even these very small amounts.  We are wanting to push forward with more food trials to build him a tiny menu....but we keep hitting roadblocks.   The biggest roadblock right now has been that he needs more nutrition to round out his current formula -- micronutrients.   For now, we have checked all his blood/serum levels of these mirconutrients and his body is holding.  However, the upper endoscopy biopsy results from last week show that he now has villous atrophy, along with continued/re-flared patchy inflammation in his intestines.   Inflammation will lead to poor absorption/utilization of nutrients but villous atrophy will lead to zero absorption of nutrients.  Despite these findings, Little man has been doing well since his release from the hospital 12 days ago.   He has had a few nights of some minor sleep disruption and a 3 mornings of some fussiness (he is cutting more new teeth), but otherwise he is maintaining a better baseline than we have seen in months!!  He amazes and mystifies the doctors all the time.  He is sick looking and acting, and his labs do not match; then his biopsy says he is sick and his demeanor doesn't match.   He is a puzzle.

With villous atrophy findings, there is even more urgency to be assured he is getting all his nutrients -- not only getting them but absorbing them.  Yesterday, his weight was up a gram.  This is good....he's not losing.   His demeanor is good, he plays actively, sleeps ok, eats well.....but he needs a turn around point.  If soy was the culprit to the inflammation and atrophy; we have removed that 16days ago and he is healing.   If the atrophy is from something else -- a slow effect of a trace protein (natural flavors ingredient in hemp milk? VitE derived from sunflower oil in protein powder? millet puffs?).   Villous atrophy is most common in Celiac Disease.  Celiac disease is a severe gluten intolerance where one crumb of gluten protein will cause this atrophy to begin.   FPIES sensitivity is the same as Celiac- where a crumb or a trace amount will set off inflammation; although atrophy is new to Little Man.   Atrophy could provide another clue to why little man's FPIES is so complex- it may indicate a protein enteropathy that is co-existing with his FPIES....because of his very sensitive and immature gut.   Villous atrophy also can come from malnutrition.   His labs have all looked good- indicating he currently is getting adequate nutrition (although we know ideally we need to improve it).  Malnutrition does not mean what that it comes from what is taken in, but also from what the gut is doing to the body (malabsorption of nutrients taken in, despite the diet being adequate).   We may never fully know what has caused this and the main goal right now is to stop it.   Only time will tell.    If his gut heals (he gains weight and labs continue to look good) - we can hopefully assume his atrophy has healed, although he may have to have another scope to verify before going to next steps.   If he does not have good weight gains over the next week, we will have to consider alternative nutrition (parental nutrition, feeding through a vein).  TPN is appealing in that it would finally provide my little man with every nutrient his body needs -- nothing would please a mothers soul more than to know her child is being nourished...it is the basic need of a mom.   TPN would mean gut rest.....a wipe-the-slate-clean sort of thing.  His gut could rest, heal, and his body would be nourished.   However, it runs it's risks....infection at the site being the biggest risk, having to re-teach him to take his bottle after a minimum of 2weeks not being able to (except for water) and then ending up with a G-tube if he does not is a very real risk.   With these risks in front of us, and with Little man playing and happy beside us -- we elected to give him just a little more time.    He appears to be healing. 

We have always let him guide us for his best treatments through this and I have done my best to be his voice.  

So, coming home from the appointment was a good thing and his big brother knew that- he greeted him home from school yesterday afternoon with a big hug.   They all played together all evening and now this morning....they appreciate having him home.  Little man enjoys being home.   We strive to maintain a quality of life for Little man, and his brothers, mudpies. 

With the holidays approaching, I typically do a lot of baking.  My boys enjoy baking with me and it is an activity for me to share with them.   Every year we do a Christmas village, with graham cracker built houses and candy filled streets....each year I let them pick out the candy that will create this village.  It has become a tradition they love and look forward to (they have asked if they can do a 4th of July village too so they have a summer one too!).    This village sits on the table for a few weeks during the Christmas season, as a decoration and a snack!   It is filled with food.....food that Little man can not have....food that would be poison in his body.....what do we do this year?  How do we make this compromise so his brothers do not feel left out from their traditions while we keep Little man safe?  I have been thinking about it for weeks, trying to come up with a fun idea.   We discussed it last night at dinner.  Little man's big brother (mudpie #2) came up with a great idea!  A Lego village!  A non-food, safe, but still very fun alternative!!   I was so happy and relieved, but also so proud.   It didn't even phase them that they would make this sacrifice and compromise for their little brother.   We're in this together....

Thankful for...

I am thankful for this little face.   Little man has been recovering from recent "fails" and returning back to a baseline.  His demeanor has been good, great.  His activity level has been good.  His pain has been minimal.  His appetite has been good.   Tomorrow we bring him in for a weight check to see if he is gaining (he should be - he's eating 1000 calories/day, so he is meeting his needs).  But weight loss has always followed his reactions.   Was soy a "reaction"?  It wasn't an FPIES trigger but we still are not sure what the symptoms we saw were- if they were attributed to soy or to food dye.   Whatever it was, it has done it's damage as Little Man's recent scope biopsy's have been coming back and are showing some villous atrophy, along with his inflammation that was visible on scope.  The colon biopsy isn't back yet and that may tell more.  More tests will need to be ran because we are not sure why there is this villous atrophy.   We do know what it means, villous atrophy means malabsorption.  Little man can not afford malabsorption of nutrients on his already restricted diet.   We meet with the GI doctor tomorrow to discuss next steps. 

More pieces to the puzzle...

FPIES builds character

I don't mean the humility, patience, endurance, perseverance, strength, forgiveness, empathy and advocacy it has taught me.  Although it has taught me all these things to a new level, and so much more.

FPIES is building a strong character in my Little Man.   At his baseline (which he is at now), he is a quiet, content, happy little boy.   A toddler who can sit quietly and color, build blocks, "cook" in his kitchen, put together a puzzle, play with cars and puppies.  A little boy happy with his surroundings, and exploring and learning from them one step at a time- taking it all in....appreciating it all.  As if he knows what he has missed out on from days of pain, days of only wanting to be held, days of tears (from both him and I).   Ask for a kiss and you'll get it, ask for a hug and his arms surround you, ask for a high five and he can't stop handing them out! 

We are holding our breath (and smelling the roses!) while he remains at a baseline.  How long can we keep him here?  Days like this that we feel more in control of our lives and his FPIES, that we feel we are winning...that we've been to he** and back and we can still see the light from Above.   We know the dark side isn't far away, and those days of pain can be back in a blink of an eye, or more like the swallow of a crumb....so we stay cautious as we always have; but it is fun to just be.

Baseline

Despite having visible inflammation (on scope yesterday), Little Man is at what we call his baseline.  He eats well, sleeps well, plays independently, learning, growing, typical toddler days.  

We anxiously await biopsy results on Monday to (hopefully) tell us more about his inflammation and intestines. 

There is a great temptation to stay here at this baseline, maybe even through the holidays.   Enjoy the baseline, enjoy Little Man, enjoy our family.  But Little Man needs a tiny menu, a tiny menu we haven't succeeded it building him yet- in finding what he can tolerate without pain or reactions- protein intolerance, FPIES, or enzyme deficiency.   He enjoys his millet puffs, and peaches continue to go well....what else can we add? What else would be safe?    The GI doctor wants a multivitamin, and now wants to consider a acid reducing medication.    I am not aware of a multivitamin or an acid medication that does not have corn.  I do not feel right doing things that would even potentially set him back when we can trial foods that have better chances of moving him forward....

For now, we enjoy the baseline- enjoy every minute, enjoy his kisses and hugs and cute gestures, learning new words and milestones. 

Lesser of Two Evils....

It seems with this FPIES, I am constantly having to make choices that are difficult to make.  Choices where there is no good answer, that it comes down to the lesser of two evils choices.  

It began somewhere around elimination diet and elemental diet...lesser of two evils?  Elemental formula because at the time, I thought for sure my production was declining due to my high stress, and elimination diet that wasn't eliminating enough (and since I already follow my own dietary restrictions).  We began to suspect a corn intolerance because the proteins in these formula's are amino acids (broken down protein chains).   

Then on to Elecare or Neocate....lesser of two evils?  Neocate because the vomiting wasnt' as acidic and it slowed down to every 4days instead of everyday.  Without daily vomiting, we began to reintroduce foods back into the diet.   This brought us to FPIES for the first times after reactions to rice and sweet potatoes, that are "supposed" to be so low on the allergen scale for food introductions.

Then on to travel half way across the country or stay here waiting for them to learn about FPIES enough to provide a diagnosis....lesser of two evils?   A trip, turned family vacation, halfway across the country to see a specialist for a diagnosis of FPIES.  

Then it was trial soy or corn first, to find an alternative formula since the one(s) he had been on were not helping him get closer to a baseline, or tolerate any foods....lesser of two evils?   We knew he had a soy intolerance and was already so sick, corn we suspected but were not sure....we didn't anticipate it making him as sick as he did, for so long.   We began to learn why he has has been so sick all his life....corn is in everything.

ER visits with a lethargic baby or wait it out till Monday morning to see his regular doctors....lesser of two evils?   Monday morning to see his doctors because we know the ER doctors (although always helpful) will not understand what they are seeing with little awareness of FPIES at our hospital.  We begin to learn how fast he falls when he starts to spiral. 

Reintroduce Neocate or have a baby on a low carbohydrate diet (unflavored Original Hemp milk has little carbs alone)....lesser of two evils?  We wanted to believe we could find a thresh hold of tolerance with the Neocate that could provide him complete nutrition of trace nutrients while meeting his macro nutrient needs.   We began to learn more about trace proteins and thresh holds of tolerance.

Transfusion or Oral iron...lesser of two evils?  Oral iron....which was going to be slow but he was tolerating and responding well to until we got a refill and it was compounded with red food dye.   We begin to learn more about his many intolerance's and end up with a transfusion anyway because of continued drop in hemoglobin to dangerous levels. 

Acid blocker medication or see if his inflammation heals on it's own....lesser of two evils?   This one, I don't know yet....

Little man had his 3rd upper endoscopy and sigmoidoscopy today to check for inflammation and ulcers, obtain biopsy's, find the source of his bloody stools, and (hopefully) put more pieces of the puzzle together.  Our (new) GI doctor is amazing and she has been very helpful, taking Little Man's health and his protein intolerance's and FPIES very seriously.   Treating FPIES is all new territory to her as well but she is very familiar with other GI disorders, and has a special interest in food intolerance's and their affects on the GI tract.  Her assessment of today's scope/sigmoidoscopy is that he has a fissure that could be the source of his lower GI bleeding, but also took biopsy's.  He also has inflammation in his duodenum (upper intestines, right past the stomach)- this may be from an allergic inflammatory response but she also feels it is being exacerbated from excess stomach acid.  This stomach acid could be from extra production due to his iron supplements- they are elemental iron and the body needs good amounts of stomach acid to absorb the iron.  So, his body is doing what it needs to do- giving him rich acid to help absorb and utilize his iron supplement but then this may be impeding this inflammation from healing very quickly.    He doesn't seem to be in too much pain from it the past week- occasional bouts of pain when we know his stomach is empty- but if we keep his formula flowing through at least every 3 hrs (day and night)- he doesn't experience the pain.   Also, his acetaminophen that is compounded with calcium carbonate (a natural acid blocker) helps with these bouts of pain.    The body needs stomach acid.  Without stomach acid, he will be missing an important aid in digestion of foods.  The breakdown of foods will be inhibited and could lead to increased allergenic potential.   In the past when he was taking these medications, he had almost immediate yeast infections- one so bad it burned the skin off his little bottom with just the couple second exposure to the bowel movement.  So an acid blocker/proton pump inhibitor could delay food introductions even longer, and give way to a host of it's own symptoms with pain.   What does he need more- increased nutrition or less acid.....lesser of two evils.....