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

Pica is an eating disorder typically defined as the persistent eating of nonnutritive substances for a period of at least 1 month at an age in which this behavior is developmentally inappropriate (eg, >18-24 mo). The definition occasionally is broadened to include the mouthing of nonnutritive substances. Individuals presenting with pica have been reported to mouth and/or ingest a wide variety of nonfood substances, including, but not limited to, clay, dirt, sand, stones, pebbles, hair, feces, lead, laundry starch, vinyl gloves, plastic, pencil erasers, ice, fingernails, paper, paint chips, coal, chalk, wood, plaster, light bulbs, needles, string, and burnt matches.

 When emmy was probably no more than 3-4 months old we noticed she had started chewing on her crib rails, not a big deal right she's just teething? As time went on we noticed she was doing more than just chewing on it, she was EATING it, literally, eating it. This freaked us out, WHY in the world wold she EAT the wood on her crib?! We asked doctor after doctor and none of them seemed concerned with it........ we didnt pay much attention to it after that, then as she got older we noticed she would eat dirt, rocks, plastic, ice, paper, chalk and some of the other nonnutritive substances. 
  I had no idea what PICA was until i saw one of the other FPIES mothers writting about it on here, i researched it again and found the informative website above. After reading and looking some more i found out that most of the non-food items emmy eats show her iron level is low......... however, her iron when checked is always amazing.... doesn't seem to make any sense yet we are used to that (nothing making sense) We have a child with FPIES, the more we learn the more confusing it seems to get....


I'm writting this post because i found something today that made me cry...........I've always liked to bake, j will joke around and call me Betty Crocker at times. Before Emmy was diagnosed i used to go on baking sprees and bake seriously 6-7 "treats" at a time, since Emmy's diagnosis i haven't baked a single thing and no longer enjoy it.
   Last year for christmas i bought Emmy and i cute matching cupcake aprons........ her's is just precious! needless to say its still in its packaging as well as mine, they are hidden away in a cuppord for random things. After Emmy's diagnosis shortly after christmas j must have put them away, i forgot totally about them.........
  Finding them today its still kind of a stinging slap to the face, i know it shouldn't be but it is. Especially thinking about how M is lately, we hardly ever eat in front of her but with me being home all day with her lately it's becoming harder, yet each time i DO eat in front of her i loose my appetite pretty fast.... before, Emmy would just sit there and look at you while we ate (which was hard enough) but lately she will climb right up next to me and make eating sounds (um, um, um) and say "I eat?" Now THAT is heartbreaking..... I try to not let it get to me but its becoming harder and harder every time.  I feel like a bad mother at times even though i know i am not.
  It seems like a punishment eating food in front of her even if its not a "treat."  Every time she sits by me and says "I eat" i want SOOOO much to give her a bite of what i have but then i stop and think, "is it worse letting her sit there and look at what we are eating knowing she's interested in it and wants to try it (sometimes it feels like a mean joke) or should i cave in and LET HER have a bite, just a TINY bite?"..... then i think of what happens to her when she has her offending foods...... it would be evil to let her have any of what i have because i know the pain it will put her in just to taste the food on her lips for those couple of seconds..... she'd have a full blown reaction to the "dairy" in what im eating and end up in the hospital. It's like a horrible mind game when it comes to food with her and even more horrible knowing what it does to her.... Every day food poisons my daughter......
   Emmy has never had ice cream, cake, cookies, ect..... She got fruit on her 1st bday, we didnt get the cute pictures of her diving into her 1st bday cake getting frosting everywhere..... she wont have those pictures on her 2nd bday either..... I dont usually beat myself up over foods because i know she cant have 99% of your every day foods. Lately however its becoming harder with her becoming more interested in them she will be 2 in almost 3 months. Before it didnt seem to be a problem, she never noticed, she never knew anything different but as she gets older it is obvious that she IS noticing that things are VERY different for her. How do we get over this hurdle? How do we make a (almost)2 yr old understand more fully what her syndrome is? every time she asks for a bite of my food im all of a sudden done eating, i throw it away and sit down with her and tell her "the food mommy was eating will make you very sick emmy, it has bad stuff in it that makes YOU very sick, mommy is very sorry that it does it to you but we will learn more about it................."  FPIES is a mental evil, it will nag and nag at you, you will feel very powerless over thoughts about FOOD for pete's sake...... it IS a war over food when it comes to a child with FPIES.
  As Emmy grows we will continue to learn everything we can on her syndrome so we can teach HER everything.   We will always be the advocates against her FPIES but she will have to be as well as she gets older..... How tho do we teach Emmy about her syndrome yet not expect to her to have phobias against food? It's a double ended sword.
  We were at the store the other day looking at halloween costumes that were on sale and of course......... the candy is placed right beside them..... THAT is torture, why cant they put candy in non-appealing bags?! Emmy was quiet for a couple of minutes but then started in on her Pu-LEEZE's..... so we spent over an hour looking at candy (emmy saying please, and i reading labels over and over again).... it was a toss up between starburst or skittles....... both of them seemed to be "ingredient ok'd" and M settled on the skittles. When i say settled on the skittles i mean took the bag, hugged them as close to her as she possibly could and wouldn't let them go......... however, that bag of skittles is still unopened hidden in the house..... even though the ingredient label seems ok i am still scared to give them to her, once i talk myself over the choking hazard i get stuck on the mental fight on wether or not they would be safe for her, is it going to send her into an episode?! once i get over that hurdle i run into the hurdle about nutrition.......... there is ABSOLUTLY NOTHING nutritional in them and giving them to her would take up room in her tiny belly not leaving any room for foods that she NEEDS to eat for the day......... It is def a constant battle........
    (in this picture the little superman to the right of Emmy is her cousin, he is 20 days younger than her yet noticeably taller than her, he weighs between 25-30 lbs, not certain, Emmy is holding steady at 20-21 lbs)

  While reading the labels on the candy bags another family (mother, son (13?) and a little girl came to stand next to us, Emmy had been playing with a toy we had picked up along the way and the other little girl wanted her to share it.... Emmy and this other little girl both sat side by side in the isle "sharing" playing with this toy, the two of them were getting aslong very well and the other mother asked me how old Emmy was.... Emmy is 20 months old, in return i found out this other little girl was 2 (less than 4 months older than emmy) hearing that i stopped to look at the two of them side by side.... i stared at them for a good 5 minutes noticing the major difference in size and height..... Emmy was SO tiny compared to this other little girl. We know Emmy is small for her age, its one thing to know it and say it but def different to actually see it. Emmy standing alone looks healthy, youd never guess she had an underlying food issue, but sitting beside this little girl you could SEE the HUGE differnce, and the other mother did and she didnt hesitate to comment on it. "WOW, she is tiny for her age" that comment brought me back to reality. I HAVE A DAUGHTER WITH A VERY RARE FOOD SYNDROME, SHE BECOMES VIOLENTLY ILL AND GOES INTO A FATAL SHOCK, NOT ONLY IS HER SYNDROME RARE IT IS LIFE THREATENING. We have swallowed that fact and taken it for granted alot lately considering M hasnt had any new foods there for no new "episodes"  Ive learned to read alot of people lately when it comes to Emmy and her syndrome........ so to this mother i simply said "she has a very rare food syndrome" what i wanted to say is "I dont starve my daughter, she is healthy considering what syndrome she has and we are very thankful for that fact. Her FPIES in a sense starves her..........." I just smiled and took one last look at the 2 of the girls sitting there playing as this mother smiled kindly at me and turned her back to me........... She never blinked when i told her Emmy had a rare syndrome she just looked at me with a smile like i was making it up......... We will continue to hold our heads high and take everything in stride, one day at a time........... Emillia, God grant us the serenity to accept the things we cannot change..............

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!!!

Monday, November 8, 2010

A day in the life of Emmy's FPIES

8-9am: Emmy wakes up and wants a "new" bottle, first thing she asks for, THEN she procedes to hand us EVERYTHING out of her crib, every stuffed animal, doll, blanket ect.......We turn on the cartoons for her while we try to figure out what she wants for her "breakfast.............." Once we figure that out (which is sometimes quite a challenge) she gets to continue watching her cartoons.  Usually for breakfast she will have one of her fruits (apples, mangos, blueberries, or strawberries) some kix and her soy formula.
11-12: She's by this time ran around the entire house turning it upside down terrorizing everything and is ready for her "lunch" which usually consists of her "1appies" "2cues" and "3am meat" which are her "1baby food sweet potatoes" "2real sweet potatoes" and "3 lamb patty with quinoa in it" followed by a pickle or apple sauce for dessert, another 8oz of formula and possibly some apple juice
1pm: NAP TIME!
4-5pm: Emmy has always taken extremely long naps.......... assuming her little body crashes from all the high sugars in her diet......... again starts the whole "new un" routine, new bottle and taking EVERYTHING back out of her crib. She then turns the house upside down again after dad or I have cleaned it.
5:30pm: dinner time, again, she gets her lamb, quinoa, sweet potaotes and one of her fruits and another 8-12oz of formula
??? after dinner its always up in the air on what she wants to do, as well as before/after nap time.... she enjoys playing outside, watching baby einstein, playing with her kitchen set and all the things expected of a 20 month old.
   Her diet to us seems pretty boring but she never complains unless she notices we have hidden any of her other "safe foods" in her lamb or potatoes at which time it is a total melt down. She enjoys baby sweet potatoes- but only sweet potatoes....weve tried the ones mixed with apples or strawberries but have learned it is a waste, first taste and her bowl is turned upside down.....
  She still def has food phobies over new foods, textures, colors. ect but we are challenging it every day to attempt to get her over that day at a time.............

Tuesday, November 2, 2010

FINALLY! Food Trials again!

We took Emmy to see Dr. Helm about 2 weeks ago and the news he gave us made it feel like christmas morning!  He was very surprised that the only meat she was on was lamb, said she def needed to start another meat, yet was not surprised that she failed turkey and legumes. He was very patient with Emmy and talked to her like he'd talk to you or me which was nice to see again. He gave us the following list of foods we could trial with her: Quinoa, corn, soy margarine, olive oil, fish, pork and venison. So far we've trialed quinoa and corn and she's passed both of them!!! That was such a great feeling considering she hadnt really had a new food since her diagnosis last December.
   Emmy is now able to have quinoa, (inca red, flakes, regular and quinoa pasta!!!) she also passed gritts (corn) and thank goodness for KIX! (FPIES-Emmy tested mother approved!) Kix have been a blessing, it is the first food she will actually eat on her own and ask for more, its hard to keep her out of the kix box any more!
      As far as her other new "safe" foods go we have to hide them every time she gets them, that is proving to be a challenge, she doesn't take long to realize what we are doing. She def has phobias towards textures/new foods and i dont blame her. She associates new foods with getting sick. Sometimes i wonder if we are to blame for that, ever since her diagnosis we read labels like crazy and we ask her if she thinks she can have the food or not.... she's not used to being able to have so many "new" foods.
   She HATES gritts, absolutley despsises them, cries when they are set in front of her and wont touch them. The first time i gave her kix we were at the grocery store doing some shopping and 3 of my nephews were with and they were having treats, i stood there thinking to myself "what can i give M for a treat?" Kix was the first thing that popped into my mind knowing she passed her corn trial. I gave her about 12 of them and she gobbled them up, i was impressed. she then asked for more and about the 3rd "more please" i started feeling bad, i knew she should be ok having them but still worried about a reaction so i cut her off.  I turned around for 10 seconds and she had the kix box open, between her legs and was eating them by the fist full, i couldn't help but laugh at the sight! Its not every day you can enjoy something like that with an FPIES child, now if only i could get her to eat her gritts like that!!!! On our way home however i was in tears, she started getting the "glazed" spacey look in her eyes and started getting pale, she was also wipping her mouth telling me "yucky" NOT a good feeling, i had my phone beside me ready to call 911, worried that she was going to start having an episode while we were on the highway, its been almost a year since she has had her last episode. I felt horrible knowing that i probably allowed her to have too much and started worrying that if she was going to have an episode how bad itd be because of the amout i had allowed her to eat. With her previous episodes it took a pea sized amount to set her off. As a parent of an FPIES child i knew i had broken numerous cardinal rules, too many to list. However, great news....... she didnt react!!1
    Our next step (trial) will be one of her allowed meats (fish, pork or venison) most likely venison seeing how our families are so big into hunting. The following will be either her soy margarine or olive oil..... Im enjoying her new foods probably more than what she is, i feel like a kid in a candy store shopping for her now. With the new foods Dr. Helm has given us the ok to trial it has doubled her allowed food intake(as long as she passes all of them) that is my next concern, i feel like we are going to strike out with one of them soon, what are the chances she will pass all 7? we've been lucky with no episodes yet but not having any new foods kept them at bay.
   We will continue taking her syndrome and trials one day at a time, hopefully and continue putting one foot in front of another meeting new milestones with her syndrome.

Dental Surgery

   So I have not been looking forward to tomorrow for quite some time..... Emmy is scheduled to be put under for 2+ hours tomorrow morning while she has dental surgery done. She has to have all but 4 of her baby teeth capped. It frustrates me soooo much. I took her in about 4 months ago and the dentist said her teeth were fine, i told him about my concerns and he waved them off. 
   With Emmy's diet being so high in sugar/acid, lack of calcium in her diet and her vomiting we knew it would take its toll on her teeth, i tried staying ahead of it but again, NO ONE will listen to us. I fought to get her back in to be seen for quite some time and by the time i was finally able to get her back in it was too late. We brush her teeth 2-3 times a day which we thought was keeping us ahead of the game but sadly it wasn't. After seeing her dentist agin he informed me that he wants u s to brush her teeth now after every morsel of food and every sip of ANYTHING. He expects us to wake her up through out the night as she takes her formula and brush her teeth even then. He said he knows that'd make for a crabby child but it has to be done........
   Emmy has been put under 1 other time back last november before her diagnosis of FPIES for her scope, i keep telling myself she's been through it before but i know this time will be a lot longer.   They will be breathing for her fully and that scares me to death, when will she catch a break?  Ive thought about just not showing up but i know it has to be done, they are starting to hurt her we've noticed. I am sick to my stomach thinking about all of the what-ifs..... I hate having to watch her go through so much being so little, its not fair...... Defenately not a good day... I'm hoping she bounces back quick from the anesthesia like she did last time but i know this time is going to be longer and deeper. Her dentist has never delt with an FPIES child before so we have tons of notes in her file and i know that, yet i continue to worry. I know sleep won't come easily tonight if at all. She isnt able to eat after midnight and can only have clear liquids until 5am.... the drive is going to be horrible, she's going o be tired, hungry and very cranky. I feel so powerless right now and i hate that feeling, to be honest we havent had to deal with that feeling for a while now, and i will admit i don't miss that feeling.
   i'm worried how much pain she is going to be in and how badly its going to affect her eating habits for the next couple of days, we are finally getting her weight back up there and can't afford for her to loose any again yet. We've put any other food trials on hold until later next week- once she's had time to recover from her surgery. So much more on my mind yet no idea how to word it.....

Sunday, October 17, 2010

No longer in the dark

Emmy was diagnosed with FPIES late December of last year. When she was diagnosed we were given a couple of hand outs on the syndrome and told to cut out a lot of her foods then sent home, that was it. We had never heard of her syndrome before and had to teach every doctor, paramedic, first responder, nurse, ect. on how to care for her and exactly WHAT the syndrome is.  When we were first diagnosed i came straight home and looked it up on-line, i found Jack's video and bawled knowing that was what our daughter went through for months. I had no idea what we were going to do and knew of no one else with a child who had FPIES as well. We were in the dark for almost 9 months when it came to first hand advice or the chance to speak to some one who had walked a day in our shoes. We knew of no one else who knew what FPIES was nor what it stood for. 
    I was at work one evening and my nurse pract. from when i was pregnant with Emillia came in, she asked me what the name of M's syndrome was and litterally jumped out of her seat when i told her, she informed me that she had met another mother who's child was just diagnosed with FPIES and that she had her telephone number for me. I cried, i couldnt help it, i took that card with the phone number on it and went staright outside and called.......... The other FPIES mommy and i finally got in touch with each other and talked for quite some time that night ( until my phone died actually.)  She introduced me to so many other amazing FPIES mommy's on line.  They have all been the answer to our prayers! every one of them we have met have been there for us if we need advice, someone to listen to us, or even to give us great ideas on what we can do to "disguise" M's new foods.  It finally feels like we are no longer in the dark and it is such an amazing feeling to be able to turn to them knowing they have walked "that day in our shoes." Our family and friends have been great through all of our journey but they will all admit it- they don't know what to say because they have never been where we are.
    To all of the other FPIES mommys' i have had the chance to chat with and have gotten to know your stories as well as share ours with- i know we've never met face to face before but we are forever greatfull for you guys and all you have done for us in such a short time of knowing us. We no longer feel like we are in the dark and we know we are not alone in this FPIES journey any longer. Thank you again SO much for everything all of you have done for us, we appreciate it greatly......