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Recent Articles Untitled Document Halloween for Kids with PI written by Board member Fallon Schultz
FPIES has honestly changed the lives of my family and myself. We lived in a "mystery world" for 19 months with a screaming, vomiting baby who passed nearly everything he ate through him. He was covered in such severe eczema, that he was non-responsive to 8 steroid creams. We saw diapers that were practically indescribable, watched our son go through numerous unnecessary tests, begged for help and treatment and fought for every bit of care he needed with our insurance company, all while trying to explain to family and friends that he was sick. Nothing could console him or make him feel better, not even his mother...

I felt inadequate for so long, that there was something wrong with me. I have an absorb-anent amount of guilt for the days when he would cry so hard, that I would be angry, put him in his crib and hide in the bathroom while sobbing hysterically. I remember the days that I wished I could run away, or the days I would desperately watch the clock, hoping my husband or a family member would come over and help ME. I would cry after every doctor's appointment after being told "Don't worry mommy, he will be fine. Your just a new mommy" feeling that I was terrible at this "job" and that maybe I had made a bad decision. I remember the day that I told my husband that I couldn't do it and that I thought that I was a horrible person, let alone a horrible mother. I think that these are the details that most mother's don't talk about, the details that some may be interpreted as as being a "non-dedicated parent", or someone who should not have children. Our society puts so much unrealistic emphasis on what it is to be a mother, that everything should be rainbows and butterflies, when in reality it is HARD, painful work. Then through in the fact that your child is undiagnosed with a protein intolerance.. that will shake things up a bit!

I am here to tell you moms, that you are not horrible if you have had these days, or continue to have these days. I have had to draw on my professional background, that of a Psychotherapist, to console myself at times. I felt abandoned by family and friends and was terrified to discuss just how I was feeling for fear of being told I had postpartum depression initially and eventually just inadequate. They weren't abandoning me, they just didn't understand, and were offering advice that was purely genuine, but it didn't apply to my son. I would feel like they thought I was rude or that I thought I was too good for their advice, but honestly, I had a raging gut instinct that told me, SOMETHING WAS WRONG! I did myself a dis-service by not communicating just how helpless I felt, anyone who knows me sees me as a very strong person and I will admit, I am very prideful. It wasn't until my son was FINALLY diagnosed with FPIES and I found a community for FPIES parents that I realized that I didn't have to be afraid, or that there wasn't anything wrong with me for feeling the way I did. It also wasn't until he was diagnosed that I started to share my feelings in a way that my family and friends could understand that has now lead to an improved support system.

The FPIES community has taught me so much. They taught me that there isn't anything wrong with me and that I do not have as many inadequacies as I initially thought. They have provided me with support and empathy, something I so desperately needed, and I went back for more and more. I shared intimate details about myself and my son and just HOW HARD everything was, and I will admit, I was fearful of sharing, fearful that I would be rejected or judged, but I wasn't... I started to heal and that healing eventually turned into empowerment. Empowerment to make change, empowerment to be a voice for our community and to change the lives of our children. I have since started a fund for FPIES in the hopes of raising money to find a cause and cure to protein intolerance. I have collaborated with some of the best physicians in this country to pioneer this change. I have found strength inside of me that I never imagined possible. I have listened, intently, to other parents sharing this journey, taken notes and compiled a list of pleas to present each time I am honored to discuss this fund. I have spent countless hours pouring my heart and soul into developing awareness of this condition in the hopes that one day, our children's lives will improve and that they will not have to face such hardship in their formative years. To know such pain so young is unfair, it is cruel. I have not come close to accomplishing the goals that I have set for myself and for the families affected by protein-intolerance, but through the support that I have received by these families, I have been given the strength, encouragement, perseverance and HOPE, for the first time in two year, something I lost in the FPIES journey.

I will shout on a roof top (without anymore shame) that I still have awful days, days that I cry and ponder why this had to happen to my baby and my new family, days that I wish I could take the pain away from my son, days that I pray for normalcy; but my ability to bounce back improves with each downfall. I have learned "how" to cope; to be honest and sit with my feelings, to give myself the chance to be devastated, to process these feelings, but also to look for a bit of positivity and hope and to utilize this positivity and hope to help my family and others. I want ALL families to know, YOU ARE NOT ALONE in this fight and that the support you need is right here! Empowerment is the best gift anyone could have ever given me, it has improved my son's life, my family's life and with hard work, hopefully your life ;)


Untitled Document Halloween for Kids with PI written by Board member Amanda LeFew
Here comes Halloween this weekend, and nothing is scarier than the potential for those sweet little treats causing an awful reaction and yet another ER visit, not to mention a very sad and sick little one! But there are, of course, many fun ways to celebrate with your little one, no matter what the age and no matter what the limitations!

I'll start with what we are doing this year. B is 19 months old and has about 10 safe foods; she reacts to several foods and we are avoiding several others. We are going to four houses in the neighborhood-- our immediate neighbors. I am preparing treat bags in advance and asking each neighbor to give out the specific bag for B, so that everything that goes into her treat bag, she can eat. I am making arrowroot cut-out cookies (possibly with frosting) in Halloween shapes, making little ziploc baggies of freeze dried fruit pieces, and including some non food items, such as stickers and spider rings. I am also throwing in some smarties! Keeping our route limited to people we know will ensure that B gets safe treats (predelivered by mama!) and doesn't get overwhelmed by too many unfamiliar faces. And she will be included in the holiday!

Here are 10 ways to celebrate Halloween with your PI baby/toddler/child.
  1. For an older child with multiple food allergies/intolerances, celebrate with your own party. By making the foods yourself, you have more control over what he/she is exposed to.
  2. For those under a year old, see if there are any Halloween parades in your area (simply little ones parading down the street in their costumes-- nothing big). Load him/her up in a wagon, all dressed up in a Halloween costume, and start the parade. He/she will love watching all of the other kids, you can get some cute pictures, and parades like these are quick ways to celebrate and still be home for bed. Or organize your own parade!
  3. For your toddler, maybe you are ready to venture to a few houses for trick or treating. You can deliver treat bags ahead of time, as we are doing with B this year, or if your little one has few food triggers, he/she is still young enough that you could easily "weed out" the unsafe candy from his/her bag without your little one really noticing much.
  4. If you are only taking your little one to family or close friends' homes, you could ask that they only give out non-food treats-- stickers, plastic rings, pencils, etc.
  5. If you belong to a support group of other families with PI kiddos, orgnaize an "allergy free" fun night-- you can arrange a "menu" with the other parents. Even if not all of the foods are safe for all of the kids, there will be other parents knowledgeable about food allergies to keep an extra eye out for the kids.
  6. Have a family night-- a Halloween movie marathon. You can make this appropriate for any age.
  7. If your little one reacts to pumpkins, you can buy craft pumpkins at Michaels and other craft stores. They carve up even better than the real thing!
  8. You could have a "food free" party with plenty to do--- painting pumpkins, mask making, games of flashlight tag, movie marathons, and simply dancing to Halloween music (monster mash, anyone?)
  9. For a younger child, dress him/her up and have your little one help you give out candy. Make sure to have special Halloween treats for them nearby, even if the only thing you do is to add food coloring to make his/her applesauce orange!
  10. Spend an afternoon making safe, homemade goodies with your little ones. Buy or make special Halloween dishes to serve the treats on later that evening while reading spooky (or silly!) Halloween books by flashlight.
Some bagged candies that tend to be safe for MOST kids include smarties and many listed here: Of course, always do your own research when in doubt. We want our kids to have fun and to be safe! And finally, here are some links to allergy-friendly recipes for treats. Nomatter how you choose to celebrate, have fun, be safe, and take lots of picture of those little dressed up cuties!


Untitled Document Empathy... as written and paraphrased by Joy Meyer
Adapted, and paraphrasing to address our little ones with multiple protein intolerances, from: "Where to start, what to say and how to respond when talking with loved ones about Infant Reflux" by Mary Kaufman, LCSW September 2006

It is human nature to want to make people feel better when they are distressed, typically our first response is to tell them that "everything will be okay". Perhaps you've been the person who's said this to someone and you've felt it was appropriate. However, perhaps you've also been on the receiving end of this comment and you felt insulted, confused or dismissed. Why is it that the things we think will help the most often put more distance between us and the person we're trying to console?

This writing will suggest some alternate ways to show our concern, along with ways to deal with unhelpful comments (when you're the one who needs empathy).

"Well, at least s/he'll grow out of it".
  1. If you've ever said this to someone, think about it this way: You probably know what it's like to have a stomach ache/cramps, nausea, gas, diarrhea or heartburn, a stomach bug or food poisoning. It's distressing and you probably reach for the nearest medication and swear to yourself that you'll never eat whatever food you think caused it again. Now, imagine that you're a baby and that the distress lasts day in and day out. Now, imagine being the parent of that baby—who listens to screaming day and night, who doesn't have anything to stop the distress, who doesn't have an article of clothing or a piece of furniture that hasn't been spattered with vomit, who stays up half the night trying to console a screaming baby, who attends countless appointments with specialists, maintains a rigorous schedule and keeps a detailed log of feeding intake, BMs, etc. As that parent, when you hear "S/he'll outgrow it", you're hearing that this is just some phase that your child will outgrow. You're NOT hearing empathy for just how hard things are NOW. Sure, we can all look to the future and imagine how different things might be; however, in the present reality, things are pretty tough and it would be nice to have that acknowledged.
  2. If you've ever said this to someone, a better choice might be, "I've heard that kids can outgrow this, but it must be miserable when they're going through this." Or "Does your doctor have any idea what's causing this or if there's any way to make him/her more comfortable?"
  3. If someone says this to you: An easy comeback is to say, "Yes, and that will be great. However, right now, it's pretty difficult to deal with."
"But s/he looks healthy to me".
  1. Unfortunately, many people with terrible illnesses also look healthy. We would never question a cancer patient's diagnosis because s/he "looks so good". While food intolerances is not the same as cancer, very serious damage can be done to the GI tract if left untreated—no matter how healthy or happy a baby looks.
  2. If you've ever said this to someone: You might consider saying something like, "You must be working very hard to keep him/her so healthy despite all of his/her issues" or "What a beautiful baby—I am so sorry s/he is suffering like this".
  3. If someone has said this to you: A good comeback is to say, "S/he really is gorgeous; however, the intolerances are really causing damage to his/her GI tract and ability to eat".
"My baby/toddler was a picky eater, too" or "S/he'll eat when s/he wants to".
  1. Unfortunately, many babies will develop oral/food aversions because it is so painful to eat and digest. The difference between picky eating and food aversions is that picky eaters simply don't eat foods they don't like; however, they will happily snack on things they like (Chocolate cake, cookies, milk, etc.). A child with a food aversion will literally half starve him/herself to avoid the pain of eating. Children will go days without taking formula or food and often end up losing weight and/or being admitted to the hospital for dehydration.
  2. If you've ever said this to someone: You might consider saying something like, "I can't imagine being in so much pain that I wouldn't want to eat. This must be so hard to watch." Or "I never knew a baby would do this—what is your doctor doing to help?" This lets a parent know that, even though you might not fully understand WHY, you are still being empathetic. It also acknowledges that there is a problem and doesn't make the parent feel as if they have to defend the diagnosis.
  3. If someone has said this to you: A good response is to say, "S/he is being followed by a _________specialist who has confirmed that this is a very serious issue. It's different from just being picky—it's called an aversion and many children with multiple food intolerances develop this".
"…Sounds like a made-up diagnosis" or "Babies didn't have this in my day".
  1. Just like other diseases (cancer, etc.), medical science is much more sophisticated at being able to diagnose problems that might have been missed in past generations. When the parent hears this, it can further make them feel alienated or might make them feel as if their baby's problems are "all in their head". Parents need reassurance when their child is sick, even if people don't truly understand what's going on. When a parent hears this type of statement, it really sounds as if the speaker is telling him/her that they don't believe the diagnosis exists or is accurate. This can quickly put a person on the defensive.
  2. If you've ever said this to someone, you might consider saying something like, "Wow, it's amazing that doctors are able to diagnose things like this now" or "I've honestly never heard of this before—tell me more about it."
  3. If someone has said this to you, a good response might be to say, "It's a blessing that medical science is now able to pinpoint what's going on. Otherwise, we wouldn't know why s/he's suffering." Or "It's always existed; however, doctors didn't know what was happening and often mislabeled this type of problem as 'colic'. I'm so glad they're able to diagnose these things now so that we can help our baby."
Points to remember: As stated before, it is human nature to want to make those around us feel better when they're hurting. The problem is that we don't often quite know how. Here are a few things to remember when talking to these parents:
  1. Minimizing the problem won't help anyone. Instead of trying to make people "look on the bright side" or making statements like "This will all blow over soon", try simply saying something like, "This must be so hard for you". Sometimes there's nothing more comforting to someone in need than hearing that another person empathizes with their suffering. Making light of someone else's misery just puts them on the defensive and makes them feel more isolated.
  2. Don't be afraid to ask questions, and ask BEFORE doing research for a parent. Most parents welcome questions and don't mind explaining their child's diagnosis and treatment plan. Since children can present with different symptoms, suffer from different complications and often receive different treatments, it's much better to talk to the parent(s) to find out what's going on than to research on your own and come back with advice/information that might not be helpful.
  3. Even if you were a perfect parent, try to refrain from assuming that you can make a child eat/cure his reflux/get him to sleep through the night. It is so frustrating and depressing to have a baby who doesn't do any of the things that other "normal" babies do. Parents of kids with multiple food intolerances will deal with gallons of puke, tons of laundry, babies who awaken all through the night for months longer than "normal" babies, babies and toddlers who would rather starve than eat, etc. it's easy for a sleep-deprived parent to start to blame him/herself for the baby's issues and hearing comments from a friend or loved one that insinuate the child would do much better under their care can be devastating for a parent. It's hard not to want to jump in and take over, usually out of an intense desire to help. If you truly want to be helpful; acknowledge what they are going through and then offer your services to the parent(s)—ask if mom wants you to throw in a load of laundry, cook dinner or clean the bathrooms for her. See if mom or dad would like to take a nap while you watch the baby for awhile (just remember to follow their guidelines for eating/sleeping!). These things are so helpful to an overwhelmed parent and your willingness to empathize and pitch in will not go unnoticed!



Untitled Document Feeding PI Toddlers written by Amanda LeFew
Toddlers are such a wild and crazy bunch. Everything with them seems to be a never ending adventure, and eating is no exception! But what do you do when your little adventurer is food protein intolerant? Many PI toddlers are still in the midst of weekly or biweekly food trials. Some do not even begin the majority of food trials until their first birthdays because of frequent and dramatic reactions to food as infants. So in a way, we parents of these little ones need to start at the beginning, introducing low allergen foods gradually and working on building a tiny menu. Potentially this is done with the help of a dietitian or nutritionist who is informed about PI. All of these precautions aside, however, we must remember-- PI toddlers are still toddlers.

My B started foods at 6 months old. Due to several reactions to a variety of foods, and needing to take a few breaks from solids for her gut to heal, we had only 4 safe foods on her 1st birthday. Six months later, we now have 10 safe foods and we are now doing weekly food trials as opposed to every third week, as we were doing when she was younger than 15 months. She has had some recent fails, but since many of her severe reactions are the "build-up" kind (we see red flags leading up to the reaction as the food trial continues), we have been able to stop the food when the reaction was still considered minor. This helps her to rebound more quickly and to be more accepting of new foods-- therefore, we are able to push on much sooner than before!

It is a constant struggle for us trying to create food that looks and "feels" like toddler food within B's limited menu. Creating alternative recipes has been a lifesaver when it comes to not only combating pickiness, but helping to deal with texture issues and food aversions. As a parent, I want my toddler's eating experience to be a sensory experience, incorporating a variety of textures and flavors into her little diet. Instead of serving the pearsauce again, for instance, trying baked pears with brown sugar or dried pear chips can offer some variation. Instead of creamed or kernel corn, we experiment with corn flour or Masa Harina (a type of corn flour that is much milder in taste and more similar to "regular" flour in texture). By simply adding water and maybe throwing in some oil, salt, and/or sugar, a simple flat bread or pseudo pancake can be created! I am hoping, once we pass some more foods, to spend a little time trialling spices or extracts, just to jazz things up. We will simply follow the same protocol as a food trial! In my opinion, when baking, the keys to remember are creativity, safety (of course!), nutritional value, and keeping it simple. I want to not only create something that B will enjoy eating but also something that I will enjoy making. No one wants to be slaving in a hot kitchen every day, only to turn out one little muffin. Really-- we ARE raising toddlers!

I could talk forever about feeding little ones with food protein intolerance--- keeping a degree of "normal" in B's very abnormal diet is very near and dear to me. I want other little ones dealing with protein intolerance to beincluded in the normalcy, exploration and fun that food can offer for them. Hopefully, some of these tips will help accomplish this goal. Until next time, eat on!



Untitled Document Are we ready for a second child? as written by Dawnetta Westman, Chairman
When we decided to have a second baby, my very optimistic family and friends all said, "I wouldn't worry about Lilly's protein Intolerance, I bet your next child won't have those same problems." Having read blogs and developed relationships with other MSPI moms, I knew that having a family full of kids who all had Protein Intolerance was a legitimate concern.

The question was, could I do anything to make a difference? I have readabout Moms taking extra supplements, and eliminating foods from theirdiets for the 1st, last or all 3 trimesters of pregnancy. Some said these things helped, others still had babies with PI. Without enough research, there is no way of knowing if these children would have been MSPI free regardless of this exposure. After what we had been through with our 1st child, I was willing to do all of those things, if I had any reason to believe it would help. When I talked with my OB she suggested I talk with Lilly's Pediatrician, who in turn suggested I talk to a lactation Consultant. I spoke to a very helpful lactation consultant who had friends with MSPI babies, she suggested going off Dairy and Soy during the last 6 weeks of pregnancy! With an MSPI 2 yr old at home, my consumption of Milk and soy is already drastically reduced. I worried about getting enough calcium, if I restricted my diet for the whole pregnancy, so I decided the Lactation Consultant's advice would be my strategy.

This strategy is unlikely to actually affect whether or not this baby has MSPI, but I do feel confident that this baby will have an easier first few months of life than my Lilly had. If my milk is clear of these Proteins, we will be able to see our babies actual temperament and get to know him/her. This clear milk strategy combined with my knowledge from helping Lilly through MSPI is giving me visions of pleasant, sleeping babies, and cuddling a cooing newborn (something I did not experience much the first time). For this baby's sake, I hope to have good news to share in January, when he/she is a couple months old and we try some Milk or Soy to see If all of this was even necessary! When we decided to have a second baby, my very optimistic family and friends all said, "I wouldn't worry about Lilly's protein Intolerance, I bet your next child won't have those same problems." Having read blogs and developed relationships with other MSPI moms, I knew that having a family full of kids who all had Protein Intolerance was a legitimate concern.The question was, could I do anything to make a difference? I have readabout Moms taking extra supplements, and eliminating foods from theirdiets for the 1st, last or all 3 trimesters of pregnancy. Some said these things helped, others still had babies with PI. Without enough research, there is no way of knowing if these children would have been MSPI free regardless of this exposure. After what we had been through with our 1st child, I was willing to do all of those things, if I had any reason to believe it would help. When I talked with my OB she suggested I talk with Lilly's Pediatrician, who in turn suggested I talk to a lactation Consultant. I spoke to a very helpful lactation consultant who had friends with MSPI babies, she suggested going off Dairy and Soy during the last 6 weeks of pregnancy! With an MSPI 2 yr old at home, my consumption of Milk and soy is already drastically reduced. I worried about getting enough calcium, if I restricted my diet for the whole pregnancy, so I decided the Lactation Consultant's advice would be my strategy.This strategy is unlikely to actually affect whether or not this baby has MSPI, but I do feel confident that this baby will have an easier first few months of life than my Lilly had. If my milk is clear of these Proteins, we will be able to see our babies actual temperament and get to know him/her. This clear milk strategy combined with my knowledge from helping Lilly through MSPI is giving me visions of pleasant, sleeping babies, and cuddling a cooing newborn (something I did not experience much the first time). For this baby's sake, I hope to have good news to share in January, when he/she is a couple months old and we try some Milk or Soy to see If all of this was even necessary! The PIC Foundation