She is Allergic to what? Personal account by Dominique

When I say Hayleigh is allergic to ALL food, I always get the "blank" look and the question "what do you mean all food?"I dread the question of what Hayleigh is allergic to when we are out with other people. They can never wrap their brain around the idea that someone can be allergic to food. Then some people get upset and they act as if she has a death sentence. My heart then sinks at the thought of having to convince another person that I am not crazy and my child is going to have as normal a life as possible. This has occurred with family, friends and complete strangers. I have a harder time dealing with the people who keep wanting me to give her food because this is what a "normal" infant or toddler does: they eat. People do not understand the pain that food causes my daughter and NO PARENT wants to put their child in unnecessary pain. I have had people question my doings and even had people tell me things are all in my head. However Protein Intolerance is a real allergy and it is not pleasant for the sufferer.  Hayleigh has no one diagnosis her Drs call her MPI (Multiple food protein intolerant), FPIES (Food Protein Induced Enterocolitis Syndrome) and last visit EGID (Eosinophilic Gastrointestinal Disorders). These three things are all interrelated and just variants on a spectrum from what I understand. The allergic reaction takes place in the digestive tract and is Tcell mediated. Every 18 months the Tcells in the digestive tract shed and her reaction to aparticular food at that time may reoccur or it may be she can tolerate thefood. These disorders are also thought to be autoimmune disorders.  Autoimmune disorders tend to run in my family so this makes sense. My motherhas vertilogo and Addison's disease both of which are autoimmune disorders.


So lets go over the questions and get the answers straight:

What is your daughter allergic to? Everything we have tried so far.

What does she eat then?  She is on an amino acid based medical formula. The proteins in it are totally broken down so technically her body does not have to interact with any proteins. She also has one safe food: baby food jarred carrots (she cannot eat carrots we cook)

But she doesn't look as if anything is wrong with her. No she doesn't because we work hard at her get enough formula. During the day she eats 6oz every 2 to 3hrs and at night she eats every 3 hrs.

Will she out grow this? We have no idea. However the more foods a person reacts to the less likely it is they will outgrow this disorder. Hayleigh has reacted to over 30 foods so her chance of outgrowing this looks slim. Of course if she does we will be overjoyed, but if she doesn't she can still lead a normal healthy life using the formula she is on.

She is Allergic to What?

Holiday Hullabaloo!...perspectives and insights shared by Amanda

It's that time again! Holiday season! No matter what holidays you and yourfamily celebrate this year, all gatherings are bound to include lots of family, food, and happy memories to be made. But if you are like my husband and I, you may feel a little anxiety over the foods (safe vs.unsafe, cross contamination) and the family members (how to explain PI and how to enforce food rules in order to keep everyone safe!).


I hate feeling this way-- I really do. I grew up with a huge extended family (my daughter is the 40th great-grandchild and there are 10 moreafter her, more to come as well) and holidays were such an amazing time--lots of gatherings, fun, food, family. Everyone was always included!  Although Bridget's list of safe foods is slowly growing, we are still actively avoiding at least 20+ foods due to former reactions, patch testfails, and/or a highly allergenic nature, not counting all of the foods that we have yet to trial. Many of the foods we are avoiding are big staples-- wheat, dairy, soy, egg, etc etc. So what is a mama (or daddy) to do? This is also our first holiday season back in the states since 2007,so we really want to see family and enjoy all of the get-togethers. We have a plan:
For every gathering, we will have a quick and simple way of briefing everyone at the party about Bridget's food concerns. We will keep it simple and to the point-- no one other than * insert safe people's nameshere * will give ANY food or drink to Bridget. No one will share any utensils or cups with her. In case anyone sees her eat something off of the floor or off of another person's plate, they are to tell myself or my husband immediately, even if they are not quite sure what she ate (these little ones are fast!), even if it is "just a crumb,." We all know what"just a crumb" can do to our little ones' bodies.
For every gathering, we will determine who is a "safe person" for Bridget,and she will never be in a room without that person by her side. "Safepeople" will be fully aware of what to avoid and what to do in case of an accidental exposure. We will also determine if anyone at the gatheringcould be unsafe, meaning a person who (a) does not believe the FPIES diagnosis or (b) is careless and will not acknowledge our requests. There are fortunately very few people that we would consider to be in this category!
For every gathering, I will bring two dishes to share that are Bridget-safe and will be sure to have separate servings for Bridget, just in case of cross-contamination (i.e. someone uses the same serving spoon for Bridget's pie as they use for the chocolate cream pie. Yikes!)  I think it is important for others to try her foods, weird as that may seem.  I also think it is important for her to learn that even though her foods are different, we can still share them and they can still be appreciated by others. To further reduce the risk of cross contamination, we might try using utensils that are labeled.
For every gathering, there will be a box, decorated by Bridget (she is my little artist!), that contains safe treats. I don't want her to feel left out. She is little and won't understand why the other children can have something that she can't have. If there will be cookies, our box will have cookies too, for example. We will also have other snack foods and allergen-safe craft supplies (store bought play-doh, for instance, is not safe for us, so we make our own). I will decorate all of her "treats" in a holiday fashion too-- shaped cut-out cookies, frosting for her muffins in holiday colors, and so on. The box will also include at least one"back-up" sippy cup, plate, bowl and set of utensils. I can't tell you how many times another little one has mistakenly grabbed Bridget's sippy and take a swig. Having a clean, fresh cup has always been something I keep on hand.
For every gathering, there will be a separate ER bag ready and in a location known to Bridget's "safe people." We will know the route to the nearest ER and we will have appropriate documentation from her docs regarding her diagnosis and what the ER staff should do in case of a reaction. All insurance cards will be accessible, as will be a list of trigger foods and trigger medications.
And as for the fun. . .  When we are at gatherings with other children, I will plan some non-food related activities for all to enjoy. Holidays are often focused on food, but PI forces us to sometimes look beyond this focus and find alternate ways to celebrate, ways that are just as meaningful, or even more so. Simple games and craft projects can keep the kiddos busy and make those lasting memories for years to come!
It may sound complicated, but once everything is in order, it really isn't. And even if it does complicate the holidays, it is a means to an end--- the most important thing is for my big girl to have fun celebrating and enjoying the holidays like every other kid, without having to make an unexpected ER visit and without having to recover from a reaction while everyone else enjoys the festivities. That will truly be a reason in itself to let loose and celebrate!

Lana Erickson's MSPI Words of Wisdom...insights shared by Rhonda

Being a parent to a food intolerant kiddo is a tough road to navigate, as anyone who has been there is well aware of.  Sometimes the biggest help is reassurance from others who have been there to build your confidence that you are doing the right thing.  I wanted to share some words of wisdom written by Lana Erickson, many of which I have repeated to myself many times through our journey.  Lana is a long time supporter of parents with food intolerant children, who has been there herself.  She has been a huge support for my son and I over the last year and I am very grateful for that!  Please note that these are generalized statements and are not intended as medical advice.  As always, please consult your doctor or pediatrician for specific medical advice.

Lana’s Words of Wisdom:

Trust your instincts.  As moms, you know more than you think you know.
2)   It's always okay to get a second opinion (or 3rd).  As the only advocate out there for your child, it's your right and your duty to try to find the best answers and the best care for your child and your family.
3)   Mucous in and of itself is not a terrible thing.  We all have mucous in our stools; we just don't always look ;-).
4)    If it's not broken, don't fix it.  If your baby is happy, healthy, and growing, who cares if he/she doesn't have perfect poo.
5)    (Especially to any TED mommies) Breastfeeding isn't worth it if you are not physically/emotionally healthy enough to take care of your child.  I am totally of the mind that breast is best, but if you are dropping weight so rapidly that you are experiencing significant health problems, or if you feel like you are resenting your child for a restrictive diet to the point that it's interfering with your ability to care for your child, then you need to get help.  Every mother of a food intolerant child I have had the privilege of knowing, including myself, has dealt with some grieving and/or depression as a result the symptoms and restrictions of food intolerance. If these feelings become overwhelming to you, it's okay to get help. You are the best mommy you can be when you take care of yourself too.
6)   Time truly does make things better.  There is not one family I've known that hasn't felt that their situation has improved over time.


I cannot even explain how many times I had to remind myself of #3 & 4, in the quest for the perfect poo!  It was so tough to find a stopping point on eliminating foods when I hadn’t resolved every symptom.  In reality, no matter what I eliminated, Sebastian didn’t have “normal” stools until he was eating solids regularly.
Even in recent days, I still have to remind myself to trust my instincts.  Over the last week, Sebastian was so fussy, not sleeping well, hitting and just uncomfortable.  There were so many variables in there with the Halloween treats, some new ingredients, a cold, new reflux medicine (which he was spitting out most of his doses), some recent additions in my diet and having Dad out of town.  Even on top of that list, who knows what I missed or any accidental exposures at daycare that I may not know about.  It’s so easy to start panicking and cutting everything back out.  Instead, I just trusted myself that it was a reflux issue, not an intolerance issue.  I got Sebastian back on the Prevacid several days ago and all seems to be well again for my little guy!  I hope that these words of wisdom will be as helpful to others on those rough days, as they have been for us.

Hidden sources of allergens in vitamins, supplements, flavorings, additives and fortifiers...perspectives and insights by Joy

This article comes on the tails of last weeks post about hidden sources of proteins in medications and vaccinations. This week, I face this same challenge.

My son could use a multivitamin but he is corn intolerant. To the unknowing medical professional, finding a non-corn syrup based product would be corn free right? Wrong. Many vitamins are derived from corn. A good example is Vitamin C (also labeled ascorbic acid), when you think of Vitamin C, what comes to mind? A nice juicy orange?...Unfortunately not. The vitamin C added to foods to make it "100% Vit.C" is a corn derived chemical product. This is also true for most citrates- (potassium citrate, sodium citrate, calcium citrate). Corn is in everything.

I know not everyone has corn as a protein trigger but my eyes have been opened wide because my son does. But whether you have a corn intolerance, or your intolerance is dairy, soy, wheat, or many others- ingredients need to be checked one by one, and not just labels read.  Federal law mandates the top 8 allergens be listed clearly on a food label if the food contains one of them (milk, soy, wheat, eggs, peanut, tree nut, fish, and shellfish ) but this still does not assure all ingredients are safe for the very sensitive allergenic individual, and does little for assurances of Protein intolerances that react to minute amounts of trace proteins in vitamins and preservatives, "natural" flavorings, hidden ingredients in non FDA regulated "organic/natural" foods/supplements, and fortifiers meant to replace actual nutrition (such as fiber added to call a bread product to call it multi-grain in an attempt to fool the consumer to believe it is as healthy/healthier than whole grain products). Every single ingredient needs to be accounted for with an allergy response as sensitive as something like FPIES, which is a severe form of Protein Intolerance; much in the same way extra precautions are taken if you had a typical IgE anaphylactic response to foods. "Processed on the same equipment" takes on a whole new meaning (of stay away caution); natural flavors that are anything but natural (typically chemically derived from wheat, soy, corn sources); fortifiers of so-called vitamins into foods that would other wise be void of real nutrition.

Recognizing all names for your individual intolerance is very important when learning to read labels for allergens. Cooking from scratch and natural sources is advisable, but doesn't take away your risk. Foods that aren't required to be labeled are: fresh produce, fresh meats and certain highly refined oils. Also foods that come into contact with an allergen during growing, harvesting or manufacturing as well as the possibility of trace amounts (although some companies do list this, it is not required). Trace amounts would be a protein found in syrups or oils, these are typically processed so that the proteins have been removed making them hypoallergenic (a wise mom once pointed out something she was told by a fellow mom/scientist - hypoallergenic does not mean non-allergenic, any food has the potential to be allergenic to a food-allergy prone individual). Fresh produce typically has a wax spray (yes, even organic can) on it that can be either corn or soy derived, proceed with caution if soy or corn are problematic. Fresh meats can come from animals that have been fed high amounts of soy or corn grains- this too can be problematic for the highly sensitive that react to trace proteins. Syrups and oils have been processed to remove the protein component and yet companies will even admit that trace proteins can still be present. Again, if highly sensitive individual can react to these trace proteins.

For more information on food labeling visit the FDA website: http://www.fda.gov/Food/ResourcesForYou/Consumers/ucm079311.htm

Know your ingredients. Know your vitamins, supplements, flavorings, additives and fortifiers. Know your food. Manage your allergies and intolerances.

Trust your Instincts. You Know Your Child Best! from American Baby Magazine November 2010.

We at PIC, find so many PI parents who are amazing advocates for their children!  Until we can get more research funded & in the hands of the medical community, WE HAVE TO BE!   It is great to see publications & doctors encouraging parents to take an active role in the health care of their children!!

American Baby, November 2010, Page 48

Trust your Instincts.  You Know Your Child Best! Could your baby's doctor be wrong?  Scary but true: More than half of pediatricians report misdiagnosing a child once or twice a month, and nearly half admit that a few times a year those faulty judgements are serious enough to cause harm, according to a recent survey from Texas Children's Hospital, in Houston.  "When it comes to a baby's health, parents are the best advocates," says Geeta Singhai, M.D., the study's lead author.

She shared her pro tips for getting your Kiddo Top care.

Press for Answers.Trusting your child's pediatrician is important, but it is okay to ask him to elaborate.  And when you don't understand probe until you do.

Don't be Shy."You shouldn't worry about offending your pediatrician," Dr. Singhai says.  "View her as person with whom you can collaborate."

Seek a Second Opinion.Receive a diagnosis you're unsure about? Your doctor can connect you with a colleague in practice.  Or dial a different doc.

How protein Intolerance can make even the least modest of us shy about nursing...a personal account by Dawnetta

It has been a while, but I will be there again VERY SOON; I was reading some comments on a mom-networking site, remembering how difficult it could sometimes be to nurse in front of extended family.  I am totally open in front of my own parents and sibling, because we are a very open family, but we typically spend almost every weekend at my in-laws & with my first child, I would usually go in another room to nurse.

Nursing & getting comfortable with it was hard work and not to be underestimated when you are working with a child who is dealing with Protein Intolerance.   Especially in the beginning stages, when nursing is generally more of a struggle, but even at 10 months old, I remember we would have to change breasts back and forth (lactation consultant no-no / PI mom reality) & she would often suddenly detach, squirm, fuss, or want to play instead, leaving me very exposed and would react like a caged animal if I put a cover over us.  Add the emotion of every time your baby seems a little disinterested- having to wonder "did I somehow eat something I should not have?  Is she in pain?" Which often led me to - "would she be better off if I just stuck with formula?"

Due to her inconsistent interest in eating, & my inability to pump (will be talking to lactation consultants about this soon), I did not produce an abundance of milk & we would sometimes need to supplement with Neocate which she "tolerated."   I feel confident that I gave her everything I could in terms of committing to nursing, and understanding our diet to provide her with digestible milk.  This was the right choice & worthwhile for us,  but is not possible for many moms of Protein Intolerant children who's lists of foods they can tolerate are shorter, or who simply fail to thrive while nursing.

In retrospect the nursing stage is such a short and wonderful time and being a mom, of even a healthy child, changes so many priorities in your life.  I am thankful we were able to share that time!  I don't think twice about the conversations i missed or how we would visit people just to spend half my time off alone with Lilly.  The thing about family is- they will probably be having the same conversations next year or next week if you see each other often enough!