"It's Not Common, But it is Possible. . . "

"It's not common, but it is possible"--- a statement far too many of us have heard and a statement that far too often leads to no answers and dead ends in our children's medical treatment and diagnosis. But today, this statement has a positive twist, as I am pleased to announce the launch of The FPIES Foundation.


It's not common that parents across the nation and often across the world can share the connections that we as FPIES parents share without ever meeting. But we do have these connections. Our stories are all different, but somehow all the same, and in our struggles, we have found unity, clarity, and comfort. Today, I invite you to visit The FPIES Foundation and to witness what these connections can build together. It is my belief that this Foundation will serve as a refuge for FPIES families and the doctors who support these families; a hub to find resources and support, all in the name of bettering the standards of care for the children diagnosed with FPIES. For your child and for my B-- for all of our children. It is not common, but truly, it is possible-- there is now a place that we all can call home.


Official Press Release!

www.thefpiesfoundation.org

PRESS RELEASE

FOR IMMEDIATE RELEASE: 5 A.M. EST, August 31, 2011

CONTACT:

BRENDA INCARNATO

THE FPIES FOUNDATION

EMAIL: B.INCARNATO@THEFPIESFOUNDATION.ORG

NON PROFIT TO SUPPORT PEDIATRIC PATIENTS WITH RARE DISEASE

KENMORE, WA, AUGUST 31, 2011: The FPIES Foundation, headquartered in Kenmore, WA, is announcing the launch of their non-profit organization and interactive web site on Wednesday, August 31, 2011.

The organization's founders identified a dire need for tangible support resources and formed to help overcome the challenges of FPIES by offering tools for education, support, and advocacy to empower families and the medical community.

Food Protein Induced Enterocolitis Syndrome is a rare, non-IgE mediated food allergy of the gut afflicting infants and children. A delayed reaction occurs (~2hrs or more) after ingesting the culprit food. Classic symptoms include profound vomiting, diarrhea, and dehydration. Symptoms can quickly lead to lethargy and in severe cases, septic-like shock. Little is known about this rare disease and currently no known causes, cures, standardized tests or treatment plans exist for FPIES patients. The FPIES Foundation will offer families interactive resources such as an online support forum as well as the opportunity to participate in an FPIES Food Survey project. A library of medical literature links and patient education tools will be provided for doctors.

The FPIES Foundation is comprised of eight board members nationwide, all of whom currently have children with FPIES. The foundation's goal is to collaborate with families, medical professionals, and partnering organizations across the globe to improve the lives of FPIES children, present and future. "Our foundation is a symbol of empowerment for all, a place where you can feel a sense of community and nurturance.“ Brenda Incarnato, Founding member and Chair

As quickly as it began, so it ends

Almost two and a half years ago, my beautiful girl was born and I immediately began nursing her. She instantly was a nursing pro and I was so proud--- great latch, the whole nine. But of course there was the screaming, the reflux, only nursing in certain positions and nursing for LONG periods of time. . . All in all, it was her comfort and to be honest, it was my comfort too. With my husband out to sea, living overseas, and with a newborn that screamed day and night, it was comforting to have SOMETHING that would quiet her for a little bit. My initial attempts at elimination diets did not work (I know now that I wasn't likely eliminating for long enough periods of time) and the doctors and lactation specialists kept identifying me as the problem. Too much foremilk, vegetarians can't have enough hindmilk (I set my milk out on the counter to watch it separate to test this theory. Let's just say my daughter has been ingesting cream from day one!), nursing too much, overreactive first time mama, etc etc ad nauseum. At five weeks old, I finally was signed up to have the visiting nurse come to our apartment to help with B. She left before the session was over, looking frightened and said there was nothing she could do for us. I never got any calls back.

Fast forward to the first FPIES reaction. My amazing friend who helped me through much of the breastfeeding process was the first to tell me that my plan of weaning by 12 months was not a realistic one. She told me that I needed to do whatever I could to maintain the nursing relationship, to encourage her to nurse when some mamas were trying to encourage their babies to wean to formula. So as months went on and I tried more adjustments and B failed more foods, it became very evident the role breastfeeding played in our lives. For both of us, it was a lifeline. It did feel strange to be nursing 8-10 times a day at 12 months and then at 15 months. We certainly got some looks, especially after moving back to the states. But again, this was what B needed and as all of you know, being a parent takes you to a different version of yourself, a version that does not give a flying fig what someone else's judgement is on your care of your child, if you know in your heart that what you are doing is best and is necessary.

We have been through a lot together. I am quite certain that half of the world has seen at least one or likely both of my breasts. (Coverups were just a recipe for disaster with this kiddo!) I am not certain that I have not been photographed with cell phones while nursing in public. I have nursed on planes, trains, beaches, sidewalks, at restaurants, temples, shrines, parks, grocery stores, and in front of random buildings. I have mastered the art of holding an infant parallel to the floor while nursing and walking with a bounce in my step so that she will settle down. We have an affirmed elimination diet in place that took many many months to hammer out and I know that if I stray from it, a reaction hits.

But tomorrow night will be the last night, the end to this complex, beautiful and often harrowing relationship.

I am scared. Maybe terrified on some levels. We just found out that the Splash is likely the cause of her random vomiting and her diet is far from complete, so going without a formula is out of the question. But as I watched her nurse tonight, I knew it was time. We will figure this out, we will build a supplement if we need to. We are lucky that there aren't a ton of holes in her diet and it wouldn't have to be a complete formula that we would need to build-- just like a customized version of her own pediasure or something similar.

I won't talk about formula for now. I won't talk about plans for the future, or what we lack or what we don't lack for B. Tonight I just want to quietly say goodbye to this facet of B's babyhood, B's growing up. For all of you mamas out there feeling the pressure from others to stop nursing, or that there is "something wrong" with your milk, or feeling your confidence eroded by what allergies do to our children and the guessing games we have to play, please know this. Everyone has different situations, circumstances and the like, but I will always look back on the decision to nurse and the decision to nurse for as long as we did, as the best decision I have ever made for my daughter. There ARE resources out there to help get most families through to a successful nursing relationship, for as long as that relationship needs to be in place. We have been thrown for quite a few loops to say the least, but the most basic, wonderful thing I could provide for her was what I was fortunate enough to be able to do. And I "grew" one incredible, amazing little girl.

Recipe File!

To all of Baby B's friends and family--- the table of contents for recipes is HERE!!! So sorry that it has taken me a year and a half to do it, but if you look at the left side of the home page and scroll down, you will see a list of recipes. Just click on the link to take you to the post for that recipe! Enjoy! Let me know if any of the links fail!! I hope this makes cooking a little easier for all!

Its My Party, I'll Eat Beets If I Want To. . . Chocolate Cake and Sunflower Seed Butter Frosting

Hello all! Well, in honor of my happy birthday (as B calls it), I had to share the cake I made for B and I. I must say, my husband did his research and found a beautiful ice cream cake for him and I that is safe for my elim diet, though not safe for B. Good job, N! It was delish!!!

As for my homemade creation. . . . I am still nursing (at 29 months as of today! They need a new classification for those who nurse this long-- steel nipples perhaps? Haha) and since December, I have had to eliminate everything that B has failed since that time because she has started reacting to ALL new fails via my milk. Boo! So I have recently lost lemon, cinnamon and all nuts and peanuts in the last few months, in addition to the other foods I am eliminating. But in bdays past, I always loved PB/chocolate cakes or lemon cakes-- both are big no-nos this year. So I thought I would make something safe for me but also safe for B! Here is what we got. . .

Note the finger prints in the frosting to the left. I had these sitting on the side board while I cooked dinner and B kept walking by and saying, "Mmmmm, a little taste of frosting. . ." When I checked on the cupcakes, I had to laugh-- she was stealing bites of frosting off the cupcakes! She has NEVER done this before! I call this success!!!

Ok-- the basics. This recipe is free of the big 8 allergens. It is free of all FPIES common triggers, can be corn free (if you use the HAIN baking powder and non-iodized salt), it is vegan, and it gives you some fruits AND veggies in your dessert serving!!! It works best as cupcakes but does hold up well enough to be made into a  big cake. It is super moist but maintains its shape beautifully. It does take awhile to bake do to the low temp. Here is the recipe!!!

Happy Birthday Mama Safe Cake
1/2 cup Sorghum flour
1/2 cup Quinoa flakes
2 Tbsp Millet flour
3 Tbsp arrowroot starch (or other starch)
1/2 cup baking cocoa (I used Hershey's)
1 Tbsp baking powder
1 tsp baking soda
1 tsp salt

1 cup pureed beets-- add water as pureeing until the consistency of apple sauce
1 cup pureed pears-- do not add liquid. Finely diced fruit is fine as well-- I would suggest pineapple, banana or apples
1/2 cup coconut or hemp milk
1/4 cup melted spectrum palm oil shortening (or allergy safe "butter" sub--- no oil here as it must coagulate)
1 cup plus 2 Tbsp sugar or sugar sub
1 tsp vanilla (opt)

Preheat your oven to 325 F and prepare your cake pan-- grease and flour! If using cupcakes, simply use liners or silicone cupcake molds.

Puree beets to desired consistency and pour 1 cup (the puree should measure one cup, not the cooked, chopped beets) into a medium bowl. Fold in 1 cup of pear puree. Once well blended, add melted shortening, coconut milk, and vanilla, blending well. Time to throw in the sugar!!! Blend well as you gradually add in the sugar. Set bowl aside.

In a separate large bowl, mix flours, starch, cocoa, baking powder, baking soda, and salt. You can play around with the types of flours used and would probably be ok using just one kind of flour and one kind of starch. I personally like this combo if you have these available to you! Remember, if making the corn free version of this recipe, use HAIN baking powder or a homemade version. Once all ingredients are well-blended, gradually fold in the wet ingredient mixture, just until well blended. Lumps are good!!!

Pour mixture into prepared pans. Bake in a 325 F oven for 30-40 minutes (I set my timer for 20 minutes, then 10minutes, then 10 minutes, and so on, until everything set up) or until the top of the cake is firm and you can push on the center without it puckering in.

Remove from oven and allow cake to cool in pan on stove top for 10 minutes or so. Remove cake from pan and allow to fully cool on intended serving plate. Once cool, frost!!!! (see below!!)

Sunflower Seed Butter Frosting
2-4 cups powdered sugar (I start with 2 and then add more as needed)***
3 Tbsp Spectrum Palm Shortening (or coconut manna or shortening/butter of choice)
2-4 Tbsp coconut milk or other milk (Again, I start small and add as needed)
1-2 Tbsp sunflower seed butter (you could also use homemade hemp seed butter, found at the bottom of the page here (last recipe).
1 tsp vanilla

Cream the shortening and sugar together. Slowly add in vanilla and then milk while blending. Once smooth, add in the sunflower seed butter (be sure to stir your sunflower seed butter well-- for this recipe, you do not want your sunflower seed butter to be too oily) and blend well. Add additional powdered sugar if needed until desired consistency is met. Attempt to restrain self from eating before frosting the cake, although really, making a second batch wouldn't be such an awful thing. Makes approximately 1 cup of frosting. I am currently freezing the leftovers. I will let you know how that goes-- how I see it is we either end up with frosting for another day or a super delicious freezer fudge. Either way, we win!

*** For corn free, there are powdered sugars that are potato based and some are tapioca based. To make your own, check this out using your starch of choice rather than corn starch.

So technically, this recipe could be done with 6-7 safe foods, depending on the variety you wanted to have with the flours.

Ok, enjoy! I hold no responsibility for those of you unable to stop eating this frosting or frosting/cake combo. I froze mine as soon as possible to avoid the potential for consuming large amounts of this treat!

There Might Be Bread

And now we pray. . .

Seriously though, I am still in the process of bread making (finding yeast free and egg free ways to make bread can prove tricky!) but it is coming along. The next recipe I post with be a bread that is: Top 8 free, rice free, yeast free, vegan, etc etc. Still working on a corn free version but I am fairly confident there will be some flexibility in substitution. This bread is intended to be a sandwich bread, not a sweet bread, but it is also fitting in the category of "quick bread" which is awesome! SO stay tuned! It will be out in less than two weeks!!!