Celebrating Food Allergy Awareness Week 2012

Aside from the fact that I am so far behind on updating here on how Little Man has been getting along (it's been a busy few months), we are celebrating Food Allergy Awareness week by raising awareness to FPIES....a food allergy of the gastrointestinal tract. Today, The FPIES Foundation launched a video created for Food Allergy Awareness Week to honor FPIES and put faces (and sentiments!) to this invisible illness.  I would be honored if you would watch it.

How to go from Feeling Powerless in Every Sense to Finding Peace in Every Situation?

How do you go from Feeling Powerless in Every Sense to finding Finding Peace in Every Situation?

FPIES can feel powerless, waiting for reactions, and over reactions of the immune system that is attacking something that is meant to nourish the body.   Being the parent that has to chose which foods, in a gamble fashion, that may or may not cause the reaction.  To cause your child to be sick - violently and/or for days on end.  So, how do you find peace in that?   Everyone finds it in their own way...

My faith helps me with mine, but even with a strong faith- I had to allow myself the stages of grief for this loss to nurture my child through food and instead to nurture him through a chronic illness that is little understood.

I still have times of feeling powerless with this allergy; but for me the key has been in being in tune with my inner peace and strength from Above, and not search for my own power,to help me on this journey.  Peace provided by Divine Love, and surrounded by family and friends that care so much for our family and our little man.   Friends that are like family, family that are friends....helping us in our time of need- through strength and prayers, and hope.  And of course, the newly found friends that make up our FPIES Family, friends that hold us up in prayer and who inspire our hope by learning together on this journey.

We trust in our Faith and that provides us Peace.  

Corn Freedom

Before I update about how the Alimentum RTF trial went, I wanted to take the opportunity to speak a little more about a corn allergy- the reason why we've been without a formula for so long.   

Awareness needs to be raised for corn allergic individuals.   A corn allergy is a difficult one to live with.  A corn allergy is overwhelming when you first realize that is what is causing reactions to trigger.  I read everything I could in journal articles but quickly found there wasn't enough information or enough known about the extents of a corn allergy; although there are a few good ones that give you a starting off point.  I learned the most from other corn allergic people sharing their stories- things they learned, successes, fails, reactions, recipes....there are growing numbers of corn free forums/support groups of people sharing this information.  These forums at least give you a beginning place to start and were a life-saver for me to helping get little man to a baseline and stop the inflammation in his body.  

One site recently did a blog post on Corn Free Basics- a sort of survival tip for starting with a corn allergy on: Living it up Corn Free.   You can read through this quickly and think "this isn't so hard"- well, consider that most of the survival items, little man is allergic to soy/legumes, dairy, wheat, rice,....

So how does a child with multiple food allergies survive and thrive?  Formula becomes a life line.  Unfortunately not always so for a corn allergic child, formula is in a corn syrup base and for many corn allergic children, this poses a severe problem.   Thankfully this is not the case for all children.   Some corn allergic follow what the is coined "corn lite" and don't seem to have noticeable or health threatening reactions from  corn derived ingredients in trace or contamination amounts, including formula.   These unfortunate corn allergic individuals can fortunately tolerate corn lite ingredients without it causing more harm than good. I've also heard FPIES families that have little ones with problems with the corn-y ingredients but after gut rest can handle corn-y ingredients (corn-lite) but still can not do full corn ingredients. 

With a corn allergy, my personal "basics" surrounds being aware of all of the things that are corn derived and that could cause a reaction -- and then weighing how much that food is needed in the body with the risk of reaction and then deciding on if that benefit is worth the risk (of attempt to trial/introduce it).   For an infant/toddler with severe multiple food allergies on a limited/restricted diet, the formula benefit is worth the risk of a trial.   Trialing the formula is necessary, but that is not to be confused with living on a formula that a child is not thriving on.  Our little man fell into that category: 5mo. of elemental formula's with increasing symptoms, progressing inflammation, decreasing protein and iron stores from the malabsorption secondary to the inflammation, generalized low quality of life for a little guy that threw up almost daily and lived many hours of the day in pain. Then it becomes about choosing the best for your child's quality of life and disease state- if the formula is doing more harm than good, then a discussion with the doctors and dietitians is in order- to of course rule out other conditions being in conjunction with and complicating the FPIES but also to find a suitable replacement for the formula. Keeping in mind that the good the formula does is well past caloric nourishment, it is about nutrients nourishment, so that needs to be weighed when considering reactions, symptoms and trace/contamination trigger exposure from the formula. 

Another great and informative site is Corn Freedom, a mom of a corn allergic boy (not FPIES) that has a online support page. She has asked any and all corn allergic families to help her, help the corn allergic.  To get corn recognized as a top allergen, to have it labeled, to have doctors recognize what illnesses corn could be at the root of, to have help for these families/corn allergic.  To do this you can write to her with your story of corn allergies- when it started, what it's like, what it means to the allergic individual and what it means to the family, what it would mean to have corn listed as an allergen, what doctor diagnosed and follows, and anything else to share.    You can submit your/your child's story to her on her support page here 

I submitted our story: 

A corn allergy has afflicted my son.   My son is 2 1/2yrs.old and has Food Protein Induced Enterocolitis Syndrome (FPIES) and his allergies include corn, among other foods such as soy and dairy proteins.  His reactions consist of damage to his gastrointestinal system by inflammatory cells recognizing the corn as an allergen, his body reacts by violently expelling the allergen with profuse vomit until bile followed by diarrhea, this can cause severe dehydration and acidosis for him.   A reaction that isn’t this severe (from cross contamination or trace proteins) will bring on continued gut inflammation which results in ongoing pain for him.  His diet is very limited by his allergies and severely so because of his corn allergy and this country’s dependence on corn.   Because of his allergy, he has even reacted to elemental formula’s that severely allergic children typically thrive on.  These formula’s are not an option for my son because of the corn syrup base.  This affects his quality of life because as an infant, he needed reflux medications but the effects they had on his body landed him in the hospital for dehydration and failure to consume adequate nutrition.  He was taken off of breast milk and put on elemental formula’s- which he consumed as his only source of nutrition for the next 5months until we saw an allergist familiar enough with corn allergies to save his life and advise us that yes, with him reactions to medications (all OTC medications have some degree of corn ingredients) as well as his inability to tolerate an elemental formula – a corn allergy was typically at this root.  Over the next months, we removed all corn and our sick little boy began to heal.  We finally were in control of his allergies, by the recognition and acceptance of his corn allergy and a lot of mommy research- thanks to other families sharing their tools for how to thrive with a corn allergy, we were able to control his allergy.  Finding a nutritionally adequate diet without a formula was another challenge we are continually battling. Recognition of a corn allergy would save my son from having to undergo numerous and invasive tests and procedures, recognition of a corn allergy would raise awareness and appeal to formula companies that there are increasing numbers of infants who have to choose between controlling an allergy and avoiding daily pain and reactions/malabsorption or nourishing their child- what kind of a choice is that for a mother?   Allergists have a difficult time recognizing that formula can cause a problem for a corn allergic if they have not cared for a child with a corn allergy and this is further disillusioned because of the dependency of formula companies on corn syrup assuring them that “typically kids with corn allergies don’t react to our formulas”….when the lives of these infants tell a different tale.   Parents are left to manage this on their own, risking malnutrition in an infant because doctors can not help, and even turn their backs on these children….because of the poor recognition and awareness of corn allergy and how many things have corn and corn derived ingredients in them.    

Corn is a complicated and difficult allergy trigger to have. 

Processing...Formula, NG tubes, and G tubes- oh my!

This term is a term that I have used a lot on this journey.   A fellow FPIES mom used it in the support groups in response to someone's post about a full doctors appointment one day.   There is so much to learn with an unknown diagnosis like FPIES, and then add in to that that it will manifest itself differently in your child and that your doctors may not be as familiar as others, and the decisions that you need to make for your own child and their health, well being, safety and quality of life.   So there is a lot of processing.   

Processing research and medical journal articles, processing the symptoms in your child, processing the differences between "normal" baby/toddler characteristics and what may be a reaction/allergy symptom with this delayed allergy, processing recommendations, extra processing of recommendations from doctors not familiar with FPIES, processing next steps, processing what is best for your child within those recommendations, processing, processing,...

This weekend, I began truly processing the need for our Little Man to have a feeding tube, a G tube.  He has a type of feeding tube right now, an NG (nasogastric) tube, to feed him the Alimentum he refuses to drink.  It is an infant formula, and smells horrible.  He has always been picky about his formula since switching from other commercial formula's to Hemp milk formula I make for him.   He notices small changes in that formula, so it has been difficult to add anything to it, to even be able to "trial" new ingredients to add to it.    Add to that that we have searched high and low for ingredients to supplement to this formula that do not contain corn.   He was missing some B vitamins and Vit.C mainly, but also a handful or so of other micronutrients.   The biggest problem was not necessarily the other nutrients but finding a vitamin that did not use corn as it's source of Vit.C.   And then there was always the constant, why not give him a food with these nutrients vs. a supplement.   His corn trigger has made this extra challenging.   

And then this is where my processing gets thick...My head knows better, the dietetics part of my brain knows better- that if a feeding tube is what he needs to get proper nutrition for growth and development right now, then it is the best thing for him.  it isn't forever, and hopefully neither is his FPIES, but it is what he needs right now.   It will have other benefits for him and his FPIES specific needs as well, benefits that outweigh the risks.   

He will not only get the nutrients he lacks in his hemp milk formula, we could test and build his tolerance to foods via a formula through the tube...utilizing his Alimentum as a base and adding a teaspoon at a time of (pureed) foods to it to trial and potentially build his tolerance.  Once a food is found to be safe, we can safely introduce it into his diet....thus encouraging him to eat foods that we know will not later cause symptoms or vomiting, and also- not have to take away a food (this has been a challenge for him, and confusing to have foods one day and then lose that food the next).  As we add safe foods that he still won't eat, we will be able to add them to his Alimentum formula via the tube; and thus decrease the amount of Alimentum he needs (very high volumes right now to get him all the nutrients he needs since it is an infant formula).  There is also the "convenience" of assuring his nutrition needs will be met everyday (via the tube) in a child who does not have a healthy relationship with food.  The stress level this reduces for us as parents, and in our house and for him to just be a kid, without the extra focus on revolving everything around his caloric intakes for the day is a part of the considerations when you look at quality of life factors. 

So, what is there to struggle about?  Why do I feel like I've failed him by consenting to a surgery to put in a feeding tube?  For months, he was on breastmilk and struggling to tolerate it, his pain and symptoms were increasing rapidly around 6mo. of age.  By 7.5mo., we went cold turkey to an elemental formula, having NO idea he would struggle with corn- and be so sensitized to it that he would react to corn syrups, oils and starches.  Things that were supposed to be getting better were just continuing to get worse.  We kept him on the elemental formula for 5mo., suspecting for many months that he was reacting to the corn but too afraid to move away from it with no other options.   Then we found hemp milk and formulated a plan to build him a formula. This proved to be a challenge right from the start when he reacted to the tapioca starch and we landed in the hospital because of the dumping diarrhea causing metabolic acidosis.   He was a sick little boy.  At that hospitalization, we met with the fear doctors have of a child with a restrictive diet not on a formula.   We had taken months to move past that fear as well, so I tried to stay empathetic to where their experience was coming from but struggled because no one was truly hearing us as his parents when we tried to tell them how poorly he was doing on this very formula, how poor his quality of life was, how many hours of the day he spent in pain, and how often he was vomiting.   We were begging for help to supplement his hemp milk but the only advice we were given was to keep him on the elemental formula's that he was not thriving on.   We knew if we were going to move him away from it, we would have to do it on our own...as scary as that would be.  But with reaffirmations that the formula was causing him more problems than it was helping:  the pain, eczema, stomach cramping, vomiting all stopped once we moved away from the corn syrup in the formula.  The endoscopy that he had at that time confirmed that his insides matched what we were seeing on the outside.   And we were faced with one of the first ever-challenging rock and a hard place this allergy puts us in:   remove his allergen from his diet to decrease not only his symptoms but the damage it was doing to his intestines- what effects would this damage have on him long term?  With Inflammatory Bowel Disease in our family history, we knew because of his FPIES- his intestines would not heal if he continued to be exposed to his allergens.  Our choice was to remove the allergen to heal his intestines....even knowing this meant he would still need more foods to complete his nutrition.  Our trek began, in a quest to find him foods his body would accept to fill in his gaps in nutrients.   We knew we were making the right decision for him as he continued to become a happier and calm little boy that slept and played better and never vomited.  He went on to "pass" peaches and millet, we were on the right path.   Moving away from the formula took diligence, patience and persistence but it was helping him control his allergy.   But how do we get him his nutrition?   We discussed a feeding tube at this time, following his first PICC line placement for TPN (following a soy challenge resulting in villi atrophy damage to his small intestines).   We decided it wasn't right for him since there was not a safe formula to put in the tube, the risk did not outweigh the benefit and so we continued to try and find foods that would fill in his nutrition, while keeping his allergy controlled so that his intestines could continue to heal.  Not an easy feat when an FPIES allergic reaction induces inflammation and damage to his gut....

Now, we seem to have that formula to put in the feeding tube.  The feeding tube would give him nutrition and take off stress about his nutrition; but it is still a medical device, and a surgery, and lots of diligent cares, and...but it would assure him nutrition.....It should be an easy decision....my head knows it is best for him, why won't my heart follow?     

Follow up appointments

Two weeks on Alimentum RTF and 1week since dismissal from the hospital, we begin our follow up appointments- Pediatrician, then Dietitian and GI.    

In one weeks time he has gained from 13.4kg to 13.9kg. Doesn't sound like much does it?   It's a pound! (1kg=2.2#)  A POUND in 1 week!!   Ok, so there is a possibility of some slight discrepency with hospital scale and clinic scales but not usually too much if weighed in the same way (dry diaper, only wearing shirt).  Even with a possible discrepancy, there would still be some gain.   It is a GOOD sign.  It is an amazing sign for our little man, who struggles for every ounce and malabsorbs so much when he's reacting or not tolerating a food.  

We briefly discuss the G tube. We have been discussing it at home.   Our initial thoughts are the same as any parent in our situation, we don't want him to have to undergo surgery and have a medically implanted device and all the medical cares that go along with that, every day.   But we do know it would be better for him long term.  FPIES isn't going away- we have a small victory here with the Alimentum RTF, with him tolerating a dairy hydrolosate without an acute reaction; but we are by no means going to give him dairy, and we know (from January trials) that his body is still quite reactive to new foods.  We do not know when we will be able to advance his diet.  Alimentum gives us a base so that trials do not need to be rushed, we can take things at HIS pace. But since he won't drink the Alimentum, it needs to go in him via a tube.   The NG tube has been ok- he's been great with not pulling on it but it isn't incredibly comfortable for him and we need to have it taped to his nose- the tape needs to be changed almost daily and he really, really fights that.  

Next up in the week, we visit with the dietitian tomorrow and get a better idea of where he is at with his nutrient intakes.  I track his caloric intakes and he is well within his 1300 calorie needs and gets 1200-1400calories/day; but I don't calculate out all his nutrients!  So, it's good to have that looked at as well with the ~43oz./day of Alimentum RTF he gets hoping it is enough.  The NG feeds have been going well, he gets 4, 6oz. "feeds" a day and he still takes his Hemp milk bottles 4-6x/day and then he also gets ~20oz. of Alimentum RTF continuous drip overnight.   It is this overnight drip that we are not sure he is tolerating.  It seems to be causing some uncomfortable gas.  

Overall, he seems to be doing so very well.  It is amazing the differences we are seeing, the little boy we haven't seen in many months- towards the end of summer he was sick and this fall/winter with the TPN has been challenging all on it's own.    

Adjustments

As we continue the Alimentum RTF via NG tube at home, we are not seeing any build of concerning symptoms and most of the other symptoms seem to be evening out.    We have not seen any more blood in his diapers, and his mood remains good (appropriate 2yr.old), his sleep is ok - and we continue to work that he can handle better overnight.  I suspect that his system is just simply struggling with the continuous drip all night long and wish that we didn't have that but there is no other way to get in that volume of formula.     He continues to drink his hemp milk well and enjoys his bottles but refuses any drop or mention of the formula.    He has been great with the NG tube though, maybe it is because of the PICC line and he is used to having a tube from his body.   The worst part of the NG tube is having to change the tape that keeps it anchored to his nose- he REALLY does not like us to touch it or mess with it at all (so he doesn't mess with it either!) 

Today, he ate peaches!  He asked for them at lunch time.   I cook and puree fresh peaches and store them in ice cube trays, so I can pop them out and defrost them in the microwave when he wants them, or when I want to use them for baking.   He ate 4 ice cube trays!   Licked the bowl clean.    He does like his peaches but he doesn't eat them regularly and he is not fond of puree....so this was really great to watch him, especially the licking the bowl clean!  

I continue to pray (and feel prayers for us) that he will continue to adjust with the formula and that the symptoms we have seen are simply just healing.   On scope just days before the challenge introduction of the formula showed that he still had some degree of villi damage....maybe we were seeing the symptoms because of that; but with the increasing feeds through his gut, we are seeing healing?  We are hopeful.   

We still do not know yet how we will continue to get the formula in him, if not an NG tube, than a G tube so that lingers on our mind...a decision that will not be easy to make...

He seems to have good days and then seemingly random off days.  We are concerned for his tolerance of the continuous feeding he gets through the night or is it something in the Alimentum itself?  Still not sure about it all because the other day was rotten and I am not sure what that was about- maybe he got "corned" (a term referenced in the corn allergic people when one is exposed to corn- because it is EVERYWHERE!)?  He was pale and yucky all day.  But he has been improved since; although he has random eruptions of skin coloring changes- not rashes but mottling, purplish skin, blue around his lips, etc....I can't seem to figure out what to make of all of that- doesn't have a history of it when not trialing foods (but presents itself when trialing).    He also has a serious "allergy ring" (diaper area).     We will need to work through these things over the next week or so -- before we decide to put a G-tube in for these feeds; we want to be sure he is 100% tolerating it.   

I try not to think too far ahead though, he is good today... and overall, he's doing really well- not as high maintenance and it feels good to have glimpses of a family routine and structure again that isn't completely around his mood and schedule.   

What is a Rare Disease?

From Rare Disease Day website:

"A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.
• 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.
• 50% of rare diseases touch children.


Characteristics of rare diseases
The 6000 to 8000 rare diseases are characterised by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease.
Relatively common symptoms can hide underlying rare diseases leading to misdiagnosis and delaying treatment. Quintessentially disabling, the patients quality of life is affected by the lack or loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease.
The fact that there are often no existing effective cures adds to the high level of pain and suffering endured by patients and their families.


Common problems faced
The lack of scientific knowledge and quality information on the disease often results in a delay in diagnosis. Also the need for appropriate quality health care engenders inequlities and difficulties in access to treatment and care. This often results in heavy social and financial burdens on patients.
As mentioned, due to the broad diversity of disorders and relatively common symptoms which can hide underlying rare diseases, initial misdiagnosis is common. In addition symptoms differ not only from disease to disease, but also from patient to patient suffering from the same disease.


How can things change?
Although rare disease patients and their families face many challenges, enormous progress is being made every day.
The ongoing implementation of a better comprehensive approach to rare diseases has led to the development of appropriate public health policies. Important gains continue to be made with the increase of international cooperation in the field of clinical and scientific research as well as the sharing of scientific knowledge about all rare diseases, not only the most “recurrent” ones. Both of these advances have led to the development of new diagnostic and therapeutic procedures.
However, the road ahead is long with much progress to be made.

Get involved!

The FPIES Foundation is participating in Rare Disease Day all week!