This is Emillia's story as seen through our eyes...... Emillia was diagnosed with FPIES right before christmas of 2009 she was almost 10 months old. We have had our challenges, our ups and downs, numerous tears, and even some laughs through our experiences.
We have met some amazing people during these trialing times and we are very thankful for them and all that they have done for us!
Emillia is a very sweet vibrant little girl as you will learn reading through this blog. She is a trooper and always seems to have a smile on her face through even some of the hardest times.
Emillia has taught us many lessons in life already and i know she will continue to do so, she is our princess!

God grant us
the serenity to accept
the things we cannot change..........

Tuesday, November 9, 2010

If We Don't Bring It Emmy Can't Eat It........

Since Emmy was diagnosed with her FPIES syndrome we have been VERY over bearing on anyone else being allowed to feed her.... It's taken us a long time to become comfortable with believing family members have become knowledgable enough to know what Emmy is ABLE to actually eat. Emmy used to be able to have her "special" animal crackers (before the docotrs eliminated them due to the rice in them.)  I was afraid that her being allowed to have animal crackers (special ones) people would assume she was allowed to have ANY animal crackers......WRONG. Same with her "safe treats" such as her ring pops, she can only have strawberry or watermelon and sometimes not even those ones out of certain batches (MAY CONTAIN DAIRY) It is hard to fully understand how to read labels for a child with FPIES (or any food allergies for that matter), do you know how many different terms they use for "dairy" in foods?! (i know some of you do!) It's even crazier some of the things you may use daily that "contain" or "may contain dairy" such as: tooth paste, gum, sunscreens, cosmetics, lotions, shampoo/conditioners, vaccines, CLOTHING, artificial sweetener, stickers, washable tattoos, WAXED fruit and vegtebales, enriched flour, paint, medications, pet foods, latex gloves, food colourings, and the list could go on! Some of the hidden terms are: whey (protein), casein, flavors, stablalizers, "dairy equipment," ...........................
    I have spent hours and hours in the store doing nothing but reading the food labels on numerous containers, 99% of the time placing the container back on the shelf with complete frustration. At first glance you would think a food would be "safe" and not contain any of the "offending" ingredients that would put your child in horrible pain or for Emillia straight in the hospital, but SURPRISE it's in there- you just have to know what you are looking for!
   We come from a very large family, emmy has 9 cousins as of right now so you can imagine how crazy family meals can get (did i mention 5 of the 9 are 3 or under?!) J and i usually take turns eating and the other will keep Emmy occupied in another room, we've def. learned to eat in shifts! Any of the extended family get togethers are a panic attack waiting to happen! Before emmy was diagnosed with FPIES we thought she possibly had just a severe dairy allergy..... we went to Thanksgiving at my grandmother's (Emmy was 9 months old at the time) and she was given "just a taste of beans" "it doesn't have dairy in it!?" from a family member....... the only reason i know this is because they had gotten some of it on her outfit..... I about cried, i went into worry mode, i made myself very clear at that time that no one was allowed to feed our daughter ANYTHING until we ok'd it. Thank goodness she didnt have an episode at that time but guess what? She HAS reacted towards legumes since that time...... I have thought about having shirts made up for her when we have to go on outtings where someone might not be "aware" of her syndrome,  " Please don't feed me I have FPIES"  but then it will raise the question as to what her FPIES is..... I want to raise awareness on her syndrome but some people still look at us like we are crazy or we have made this syndrome up...... We have yet to make any shirts for her but in return kindly remind everyone at the get togethers that "If we didn't bring it Emmy can't have it............." THAT is our cardinal rule and has seemed to work for us so far, some people still question about it and i gladly tell them about it......    With the holidays coming up here soon again it is def in the back of my mind, we can't keep her away from all family/friends but still constantly worry that someone might "forget" and we will end up in the hospital with her...... So again to ALL family and friends PLEASE......IF WE DIDN'T BRING IT EMMY CAN'T HAVE IT, don't try to be the fun one and sneak her "just a little taste" because THAT little, minute, teeny, ity bity "bite" that you just fed my daughter may send her into a fatal shock.
   Our immediate family, cousins, aunts, and uncles and close friends have been amazing with her, they will ask if Emmy is able to have something they have but 99% of the time it contains one of her triggers. Unless they are certain pickles or Kix cereal, she is usually NOT allowed to have a treat with the other children.  i understand that evryone has only good intentions when it comes to feeding our daughter but it's easy to overlook labels, i did it once in the very beginning (before she was diagnosed) and i still beat myself up over it...... it's easy to do if you dont know exactly WHAT you need to be looking for......
   When emmy and i go to the bank (we bank at 2 different ones) the teller ALWAYS used to give us suckers for her i never said anything at first.... (she can't have them!) then they must have realized that she wasn't allowed to have them, in return- they started asking if she could have one and in return i'd tell them she couldn't because of her syndrome and that they'd make her sick..... it didnt take long (at both banks) before they started giving Emmy stickers!!!!!! Stickers still scare me sometimes but she knows that is what she gets when we go to the banks now, she never asks for a sucker sitting in the jar right in front of her but will kindly ask "Sticker Puh-LEEZE?!" if they forget to give her one.    Its moments/times like these that i know with what we have told people about Emmy's syndrome people in our small town ARE paying attention, they might not fully understand to what extent her FPIES can get to but i know now that they ARE LISTENING and i can't tell you how much we appreciate that!!!!! There are numerous numbers of you guys out there that are willing to learn with us when it comes to emmy's syndrome and we are forever gratefull for all  of you!!!


  1. Well put Sheree - we can certainly relate to this. It is hard but your approach is great. M & R only have one safe food so far, but I do fear others even trying to feed them that - and can't imagine the fear when they can have "many" food.

  2. oh I have thought about the T-shirt thing sooo many times but have yet to come up with what to put on them! The best suggestion I have so far is 'do not feed - FATAL allegies'

  3. Sheree...I meant to put this on one of your last blogs but was on my iTouch and couldn't post as are SUCH an AMAZING mom!! What you have gone through, and for so long all on your own. Wow! Emmy is so lucky to have such great parents.