The Protein Intolerant Kitchen: Ingredients, perspectives and insights shared by Amanda

Skeptical about being able to create something with only one or two ingredients?

Cooking is just like art--- you can paint a sunset with many colors or you can paint a black and white sunset with shades of one or two colors. It is may look different but it is still a sunset, and it still can be just as unique and just as beautiful. The same thought applies to baking for your child with PI!

There are always variations and substitutions to be found but here is a basic list you may seek to build for your cooking endeavors. Please keep in mind (as you all know!) the most important ingredients are your child's safe foods and foods that are nutritionally helpful to your child's diet. That said, there is a special place for the “goodies”--- with so many PI kids having varying feeding issues, it is important that we give them as many options for texture, taste, and variety to help stimulate normal feeding development.

Oil
Find a safe oil. Nutritionally, oils add fat, sometimes they can be healthy Omega fats. And typically our little ones need some extra fats in their diets! From a baking standpoint, oil helps to bind ingredients and to keep the finished product from being too dry. Aesthetically, oil adds flavor and dimension to a recipe. Safflower oil may add a nuttier flavor (a great substitute for recipes calling for peanut oil!!) whereas canola oil adds a buttery flavor, one of the reasons why canola is so often preferred in baking. And of course, there are oil substitutions, depending on the recipe, such as fruit purees and alternative shortenings (such as palm shortening.)

Flour
A flour does not have to come from a grain!! Repeat with me. . .
There are many types of flours out there-- coconut flour, buckwheat flour, almond flour, garbanzo bean flour, seed based flours . . and that is just the tip of the iceberg. There are grain based flours of course-- wheat, corn and the like-- but for those little ones who cannot tolerate grains or might simply not be ready for them, there are countless alternatives.
When selecting your flour, learn a little bit about it. Read recipes that use the flour-- even if you have no intention of making the recipe-- the ingredient list alone can tell you how that flour reacts and interacts with other baking ingredients. Coconut flour recipes, for instance, when coconut is the only flour, typically require several eggs for leavening purposes as well as for binding purposes. Also, be aware of the taste. Quinoa flour is quite strong for some and using certain spices or different types of sugars can help to balance out the flavor.

Sugar
There are so many out there-- you just may have to do some digging!! “Regular” white sugar isn't the only option-- there is organic cane sugar, beet sugar, maple sugar, coconut sugar, date sugar, honey, agave nectar. . .

A key element in choosing your sugar again lies in how the sugar will react/interact with the other ingredients. For instance, when making a sauce, I discovered that coconut sugar boils and breaks down differently than “typical” brown sugar. Also, coconut sugar adds more sweetness to a recipe than honey or granulated white sugar, so you will use less for the recipe. Maple sugar also requires alterations for best use. Some sugars will make a recipe seemingly more moist whereas others can make it seem a little drier. I personally enjoy using a combination of sugars but whatever is best tolerated by your little one is the best sugar (or combo of sugars!) for you!!!

The (typical) Freebies
Every little one is different and if your little one is particularly sensitive, you may find yourself wanting to trial the “freebies” as well. You know you child better than anyone and should determine what truly can be trusted for your child. That said, many children can tolerate standard baking chemicals such as salt, cream of tartar and baking soda (baking powder can contain corn, although there are corn free versions!).

Some people consider the starches to be freebies because they are not supposed to contain any food protein, therefore, based on this, the child should not react to them. That said, there have been reports of parents on internet boards stating that their child has reacted to one or more of the starches. So same as before, know your child and tread a little more cautiously here than you might with something like salt, for instance. Of the starches, arrowroot has been historically used with people who have GI issues or poor health in general. Because of this, we felt confident trying it with B. Not only is is a helpful baking ingredient (for binding), but it is also helpful in putting weight on these little ones when added to the ingredient list.

Fruits and Veggies-- Beyond Purees!
Fruits and veggies are great additions to recipes! I like adding B's two safe veggies to baked goods because they are easier for her to digest when she eats them this way. Plus, it makes her baked goods even that much healthier. Purees can be used as oil substitutes, egg substitutes, and simply to add flavor to an existing recipe. Generally, when I add a puree to a recipe NOT as a substitute for an ingredient, I simply wait to add in the water/milk required by the recipe after mixing in the puree. The puree adds a little bit of liquid to the recipe, so it may not require as much liquid from the water or milk source.

Liquids
Most recipes specify a type of liquid but that does not necessarily mean it is the only type that will work in a recipe. Milk is commonly called for in recipes. Sometimes you can substitute water or juice in place of milk-- it depends on what purpose the milk serves in the recipe. You can typically use alternative milks interchangeably, with some minor adjustments occasionally needed. Breast milk can be used in recipes in place of dairy milk. Also, in some recipes, formula may be substituted-- the key here is knowing what temperature(s) the formula can tolerate. Can it be frozen and used for ice cream? Can it be baked in a cake? Always contact the manufacturer when in doubt and when you cannot find this information on the label. And like everything else, you will discover the best results through trial and error!


I hope these ideas can get you started in the kitchen. It is so rewarding to create something that your little one (finally!) can eat, especially when it is a special treat for a special occasion. Just remember-- like most everything else in the life of a parent of a PI little one-- trial and error is really the best way to discover safe, tasty treats! Happy baking! Feel free to post any questions for me here and be sure stay tuned for the third and final part of the PI Pantry series!!!

The Protein Intolerant Kitchen: Equipment...perspectives and insights shared by Amanda

Part 1-- The Equipment

Welcome to our FPIES test kitchen! And a note-- though we deal with FPIES in our household, all of this info is applicable to cooking for children with various forms of PI. So your little one is ready to embark on the world of solids, or maybe he or she has already. For parents of little ones with PI, reading the labels and being hypervigilant about hidden ingredients can be exhausting. Why not make it all homemade? Why not create safe foods at home, leaving behind worries of factory cross contamination and questionable ingredients?

But what equipment is needed for this noble endeavor? There are many options out there for baby food specifically (there are actual cookers that do just about everything but pick the fruit off of the vine for you!) However, if you are like me, you will want equipment to be simple but frugal, and items that will hold up with much wear and tear. Here is our list of equipment and uses:

1.Saucepan(s)-- Buy one medium, or one small and one large saucepan (with lids!) I like the ones that are dishwasher safe and are free of non-stick coating. This way, they can be sanitized!

2.Colandar-- Buy at least one medium to medium-large colander. Be sure that it nests into one of your saucepans. You can use this for steaming fruits and veggies before dicing or pureeing them!

3.Utensils-- Have a variety of your favorites and again, I do love the dishwasher safe varieties. I keep a serving spoon, a whisk, a paring knife, a few spatulas, a serving spatula (like a pie server), a pastry blender, a pampered chef masher, and measuring cups/spoons, as well as a few odds and ends.

4.Silicone baking cups-- These are dishwahser safe, you can use as many or as few as you need, and the muffins/cakes typically pop right out without any need for messy greasing or papers (some of which, believe it or not, could contain questionable ingredients!) I got 12 for $4 at Target (and they are heart shaped!)

5.Electric mixer--- I use our Kitchenaid and simply sanitize all mixing parts between uses

6.Mixing bowl(s)-- I keep two dedicated to B, but one is really enough.

7.Food processor or Blender--- I have both. A mini food processor for small jobs and a large glass jar blender for large jobs. Really, you just need one or the other, but I like having both. These are much cheaper than buying those expensive baby food makers and you can find some with lots of settings to create a variety of textures for your little one's foods. My current blender has 14 settings and is very resilient to my incessant cooking. It was under $50.

8.Brownie pan-- Sized at about 9x13, this can be used for cakes, sorbet making, cookies, bars, granola. . . the list goes on. You can also use this to hold your silicone baking cups when making cupcakes or muffins, or for flash freezing veggies and fruits.

9.Freezer bags-- I get the quart and the gallon size. Once you make baby food cubes or packets, several can be stored in the freezer bags, freeing up your trays for more cooking.

10.Ice cube trays-- You can also get actual baby food freezer trays but really, you can just pick up a few ice cube trays at the dollar store. For the plain ice cube trays, I cover them with a solid layer of press and seal before freezing food in them. Silicone trays work really well too--- just cover them with the press and seal too.

11.Press and Seal wrap--- Cover ice cube trays of premade food with them, make little packets of diced frozen food, etc. Many many uses!

12.Variety of small storage containers (Freezer and microwave safe)-- These are great for pre-made meals if you don't always have time to cook everything right at the meal time. Also, many recipes make much more than our little ones will eat in a serving, so these are great for preserving leftovers.

Some children will not be sensitive enough to their trigger foods in order to need to use separate kitchen equipement from the rest of the family. Not only is B sensitive to some things to the degree of needing separate cookware, but I also find it easier to have her own set of things. This way, when I need something for her food, it is readily available. Also, I don't have to question the cross contamination, which is a huge relief. She does share some of our cookware, but only equipment that I can adequately sanitize in the dishwasher. In accordance to using separate cookware, I also make sure that I buy separate sponges for washing the few pieces of equipment that are not dishawasher safe. I keep them a different color from the sponges I buy for handwashing the rest of the household's dishes, and I never allow her dishes and our dishes to share the sink.

Another significant detail about your PI kitchen equipment to remember: you are cooking for a child, so make it fun! I search out utensils that have bright colors or patterns, silicone cups and pans in fun shapes, and any fun looking equipment that I might not buy for the rest of the household (I just bought a tiny skillet that makes pig shaped pancakes). Most of us will have to encounter food aversions or simple toddler pickiness at some point and keeping things fun and fresh can help make the same old foods still look appealing.

I hope this helps to get everyone started! Keep posted for the next installment of the PI Pantry-- Part 2: Ingredients!

Daycare and Protein Intolerant Children perspectives and insights shared by Rhonda

I will never forget the day my husband came home from picking our son up at daycare.  He relayed the message from one of his part-time teachers: Sabastian must drink cow's milk and can not be allowed to have breastmilk as part of the transition from the infant room to the 1yr.old room.   She also gave my husband a copy of the menu and asked us to circle what foods he can have.  The menu didn't have any lists of ingredients and the snacks are mostly processed junk food.  As many of you know, even something as simple as canned pears or applesauce can contain corn derivitives; which is one of many foods that my son is intolerant to.  This was about two weeks before he was scheduled to make the transition.

Up to this point, I was very happy with daycare and didn't need to worry too much about the foods.  The infant room is much more controlled: the kids are put into individual seats so they can’t reach other kids, and the teachers would leave my son in his seat while they cleaned up any crumbs from the other kids.  I made and brought all my son’s food, which was pretty typical for all infants in the infant room, so I didn’t have to worry about him getting someone else’s food.  Also, there was no craft time in this room, so no food based art to worry about.

So, with this new change in feeding and food supplied, my husband and I were both extremely upset.  We didn’t really want to move our son to a different daycare, but were certainly willing to do so if it came to that.  Luckily, my son happened to have an appointment with his pediatrician a few days after this happened.  We explained the situation to her and she wrote a letter for the daycare explaining Sebastian’s diagnosis of MSPI, why he can’t simply be switched to cow’s milk and that breastmilk is a medical necessity for him.

I was so happy to have that ace in my pocket when we went into the meeting with the director.  I also put together a list of websites for the director and his teachers, which explain what MSPI is, feeding kids with MSPI, and sites with lists of the hidden milk, soy, and corn ingredients.

When we did have the meeting, the director and two of my son’s teachers were involved.  This daycare had only been open for two years, and while they had had other kids with MSPI, they had not had any others that were as intolerant as my son.  Some of the solutions that had worked for the other kids just weren’t a possibility for us.  We addressed their concerns and found solutions to their concerns.  For example, they were worried about how to heat up the breastmilk, since there was no microwave in the room.  This was a simple solution to us; just shake it well and serve it cold.

I especially loved bringing up the point, that if my son is up all night long having a reaction, they really don’t want me to be calling his teachers at 3:00 am to try to figure out what he might have been exposed to that day.  That definitely grabbed their attention!

The director agreed to allow my son to have his breastmilk and that we would continue making all of his food and bringing it to daycare.  I had given the pediatrician’s note to the daycare, but still feel that it should be my right to provide breastmilk and any food that I desire my son to have at daycare, regardless of medical necessity or just my own preference.

I have never asked the director for a lower rate, since my son does not consume the food, as I figured it does take some extra time for the teacher to nuke my son’s prepackaged meals.  I had offered to spend a few hours to come in and go through the ingredients of the foods, so we could identify any safe foods for my son.  The director instead offered to cut off the ingredient labels on their foods, so I could go through them on my own.

The only thing from the meeting that I was unhappy with, was that they wanted to delay my son’s moving up to the 1-year-old room for 2 months, to see how his IgE allergy tests go and in the hopes that he would be able to tolerate milk by the time he moved up.  My son was developementally ready to move and was getting bored in the infant room.  I still don’t think it was right to “punish” him for his food intolerances, but at least he was with the two full time teachers that I had been working with and felt comfortable with.

When Sebastian moved up to the next room, I made sure to again discuss the food intolerances and to provide a letter explaining the food intolerances and what response I want from them if he were to be exposed to some unsafe foods.  I also ask for at least a one-week notice if they are going to be doing any art projects with foods, so that I can make arrangements to have safe alternatives available for my son.

Another thing that I am working on is to creating a list of foods that I am confident are safe for my son and with enough detail so there can be no confusion (i.e. plain raw apples, plain raw grapes, etc.).

 In hindsight, I do wish that I would have been more detailed with his teachers on the accidental exposures and what action I would like from them.  I recently found out that he does occasionally grab some of the other kids’ food, but that he is really good about spitting it out.  So who knows how many trials may have been a fail due to an exposure at daycare that I never knew about.  His teachers mean well, they just didn’t “get it”.  They know that his IgE blood rast test came back negative for the Top 8 allergens and corn and that it is likely he will not have a life threatening anaphalactic type of reaction, which may have given them a false sense of security when it comes to accidental exposures.  I have since made sure to describe my son’s reactions to foods, so they realize that even though not life threatening, still very painful for my little guy.

It is frustrating, but we are getting through it despite a few set backs here and there.  I have since heard of other friends’ daycares that actually have a separate kitchen to prepare foods for allergic and intolerant kids.  That sounds like heaven to me, but if you don’t have that option, like us, I would just recommend giving the daycare a letter with very detailed instructions and descriptions of your little one’s intolerances and any actions that you would like taken.

Also, talk to your child’s teachers on a regular basis, as many things come up that you may not have known about.  I like to tell my son’s teachers when we are doing a new trial and ask them watch for any unusual behaviors from my son and let me know.  They don’t know all of the signs to watch for, like us parents do, but it is good to have some knowledge about what happened when they were away from us.  At this point, I am happy with our situation and where we are at.  I believe that having the open communication with his teachers and having them “on our side” has made everything go so much smoother. 

Babywearing and the PI Baby Part 2, personal account shared by Jackie

Last week, a fellow board member recounted the usefulness of babywearing in her infant's early months. It made me stop and think about what a saving grace babywearing has been to me and my youngest. I wish I had been less intimidated by it when my other children were younger!

As a single, work at home mother of 2 older children... I knew that this baby would be more difficult for me all around. I had no idea HOW much more difficult everything would be on me until I came home with him and needed to do housework, work, or pay attention to my older children. At first, I figured I would just take it a day at a time... slow and steady wins the race. Right from the beginning, however, Jaxson proved to be much different than my other children. I noticed the signs of reflux and PI within his first few weeks of life (I have since learned about even more issues). He exhibited many signs of Sandifer's syndrome; always arching his body, wiggling and never could lay contently. He would not be put down in the bassinet. He would not sit in a swing, which had been my savior for the other two. He vomited and choked with every bottle and needed to be held constantly.

I tried a ring sling that I had from my other children. But when it came down to it, it made me nervous. He looked squished. And I am a small person, so it was uncomfortable, and I couldn't ever actually leave him hands free. Enter my first savior... The maya wrap. The very first time I put him in it, he snuggled up to me, content, calm... and slept. I thought, there is NO way that this is happening. So, with the next fit, I tried it again. And had the same results. I was hooked.

Upon doing some research I learned that there were many other types of wraps, so I invested in them as well. And they were more sturdy, more comfortable, more safe. I really enjoyed carrying him and became very active in the babywearing communities online. But it was hot. VERY hot. And very hard to wrap him while trying to get a 1st grader ready for school, just to take him out, and put him back in when we arrived to the school. So, I found myself getting lazy and not using it as often. Despite his love of the carrier, it was proving to take too much time out of my schedule for 15 minutes of peace here and there.

With the research I did... I found the mei tai options and SSCs (soft structured carriers) online. I was slightly intimidated, again, but I thought why not! So, I began my making my own mei tai. WHAT a difference! It was so much easier to get on and off without having to remember the steps. The more I used it though, the more I realized that I wanted the buckles. Set your size and be done. Snap in, snap out.

Enter my absolute favorite baby carrier; the Beco Butterfly. Jaxson absolutely loved being carried in this carrier. And it didn't matter if I was home or on the go, I could throw it on in just a couple of minutes and be moving. We took walks to the grocery store, the school, the front office, everywhere. He was always happy and upright and I had my hands free; without having to worry if he was too loose or if the fabric was too hot. Even with a bad back, I could carry him on the front or the back without a lot of uncomfortableness. Recently, Beco released a carrier called the Gemini and we have now moved on to that carrier. It allows us to do safe forward facing carries as well as hip carries, making it the absolute most versatile SSC carrier I have seen. So far, he loves it. And he wants to be on the move. These days, it is not as much to prevent vomiting and reflux attacks, but it is as just as useful to me. I would highly recommend for anyone that has more than one child to look into an SSC. The easiness with which it goes on and off is worth it!

New Guidelines for Diagnosis and Management of Food Allergy in the United States, a review by Joy

http://www.niaid.nih.gov/topics/foodallergy/clinical/Pages/default.aspx

There has been a release from the National Institute of Allergy and Infectious Disease, a component of the National Institute of Health.  The guidelines were developed over a 2yr.period with combined efforts from an Expert Panel from 34 professional organizations, federal agencies,and patient advocacy groups.
The full report is 84 pages long.   The first glance I took of it, of course I skipped through to where it mentions FPIES.  Yes, that is right- it gives an entire section for FPIES.   It is a very real diagnosis and having it mentioned here in the new guidelines for food allergies is a big step for the future of these children affected by it.   But the report is, of course, not limited to FPIES.   I have begun to read through it and am impressed with the information it provides, updated information that is needed as this country's food allergies are on the rise daily.   In fact, that is one of the reasons they developed the new guidelines.

The first thing I notice is in Section 2 (pg7): Definitions   "A food allergy is defined as an adverse health effect arising from a specific immune response that occurs reproducibly on exposure to a given food."  This is updated terminology to address both IgE and Non-IgE food allergies.  Typical immediate onset allergies are IgE, that is IgE-mediated mechanisms are involved.  Non-IgE are delayed and thought to typically involve cellular mechanisms.  "The terms Allergy and Allergic Disease are broadly encompassing and include clinical conditions associated with altered immunologic reactivity that may be either IgE mediated or non-IgE mediated".

It goes on to describe terms such as Food Allergen, this addresses foods or specific ingredients and components in a food (typically proteins).  It also addresses cross-reactivity definition and significance in food allergy.  Food oils are considered low allergenicity if virtually all food proteins have been removed in processing (note low, not non-allergenicity).

I am pleased to see that there is a lot of language in this report to describe diagnosing food allergy- not limited to serum levels of IgE, but in response to tried-and-true elimination and challenge of the foods.  Things to be considered is the level of reaction, the quality of life - the balance of benefit and harm..."identification and avoidance of foods responsible for food-induced allergic reactions improve quality of life and potentially prevent life-threatening reactions and disorders.  With the appropriate evaluation, there is a low risk of erroneously diagnosing someone as food allergic and adversely affecting his or her nutritional well-being and social interactions".

This is an important moving forward (and over due) step in the world of Food Allergy.  And as not only a mom of an FPIES child, but a Dietetic professional as well, this is of critical importance -- to properly recognize, diagnosis and treat food allergy's not only so that diets are not over restrictive but also, on the other end of the spectrum,  so that proper identification to symptoms can be made, and treated with removal of the offending food(s).   This is important because as of now, allergy's are only considered "true" if they produce an IgE and immediate immunological response.   These guidelines are helping to redefine, and hopefully reshape how adverse reactions to foods are viewed, and thus diagnosed and treated.  It is very important to be able to treat so many growing number of protein intolerant infants and toddlers, to have recognition that not all food allergies are IgE response, that Non-IgE food allergy's exist, are prevalent and a significant adverse health effect on children suffering from them.

Food Protein Induced Enterocolitis (FPIES) and Food Protein induced allergic proctocolitis (AP) are initially described on the bottom of page 8.

A table (in section 4, pg 20) for "Diagnosis of food allergy: when should a food allergy be suspected?" and includes delayed GI reactions as well as other cutaneous, ocular, and respiratory delayed symptoms (as part of the cascade of symptoms)- it should be noted that the expert panel notes that food allergy rarely causes isolated respiratory symptoms such as asthma and allergic rhinitis.

Included in section 4 (page 22) is an outline for Differential for Diagnosis of Food Allergy, which include addressing adverse reactions to foods that are not allergenic in origin.

A few pages later (page 27) is the discussion on Diagnosis of non-IgE-mediated immunologic adverse reactions to food.  This is where FPIES and AP are described as Guideline for diagnosis, rationale and the balance of benefit and harms. It is a good synopsis of the research on FPIES thus far.   I am happy to see it has it's place here and described so well for the clinicians.  There are additional research articles on FPIES, and additional research is being done to further understand this diagnosis, and ultimately (hopefully) find better treatment options to provide to the families struggling with a severe protein intolerant child.

I am still reading through the rest of the report, it covers a lot of new language, encompasses newer research, clarifies IgE reactions.   In general, it is well written report and hopeful that with FPIES and AP being included; it will begin to be in the differential diagnosis for more kids presenting to the doctors offices with feeding intolerance's. 

Babywearing and the PI Baby, a personal account by Amanda

Recently, I have been thinking of the days when B was just a tiny little one. The days and nights were often very rough, and with a husband deployed for a good deal of her infancy and with living overseas, I was often desparate for something, ANYTHING that could help. Enter the sling-- my savior!

A little background. From the start, B was a screamer. She would scream for hours on end, day and night, and though we were dismissed by the doctors initially, she had obvious signs of painful, silent reflux. She was a comfort nurser and nursed 24/7, she did not sleep, she constantly wanted to be held, and even when held, she spent much of her time being very very upset. My attempts at elimination diets did not produce much in the way of results, and formula wasn't an option for us. The docs said it “might be colic” and I used to joke with my husband when she was screaming that it must be 6-8pm SOMEWHERE (the typical time frame for nightly colic, apparently).

We started using the mei tai sling when she was about 3-4 weeks old and once I started, there was no going back. It kept her upright against my chest and though she would always scream for the first 10 minutes, she would instantly settle down after the time had passed. The best part was that she would even SLEEP in this sling for as much as 30-45 minutes at a time. She felt more relaxed and her breathing was more regular. Not only was it great to have my hands free to do some things, but it was wonderful to get a “break” without having to set my baby down and listen to her scream. Since she was in the sling, she was still being held, she was still feeling that reassurance, but I was getting to remove a little bit of the burden and allowing the sling to do some of the work.

Once she was about 3 months old, I switched to the maya wrap (again, slinging her in the upright position against my chest). I could take her anywhere in the sling, I could nurse her in it and at night when she couldn't sleep, I could put her in the sling and give my tired arms a rest. It folded up flat in my diaper bag for the rare moment when she wasn't actually in it (I remember many a miserable car ride when I fantasized about being able to safely sling her while driving. If only someone could have invented such a device!!!)

Initially, I was intimidated by the slings. I knew I had wanted to use one but when pregnant, I could never decide on what one to get. My friend bought us the mei tai and really, it ended up being the perfect sling for a newby slinger! It goes on in a very concrete way so there isn't a lot of room for error. It was extremely comfy and easy on my back. Plus, B LIKED it and it made her SLEEP. I was sold! The Maya ring sling intimidated me a little bit more, but once I got the hang of it (maybe took a few days), it was very easy to get B in and out of it without much thought and without much time. Both slings can accommodate a child of 8-35 pounds, and if used properly, can be used with newborns. B is now 25 lbs and I can still sling her with ease and comfort. Both are versatile and allow you to wear your baby on your hip, chest, or back. Both are GREAT (in my opinion) for babies and toddlers with PI and/or reflux, since you can sling them upright, among other positions. And, if you are super ambitious and crafty, you can actually make your own. You have to be sure to buy proper rings for a ring sling and to buy appropriate fabric for a mei tai style, but it can definitely be done!

Every mama needs a break but not every mama has someone who can swoop in to relieve her at those trying times. The slings were my relief, B's comfort, and an integral part of our bonding and attachment that I will always treasure.