Wednesday, February 29, 2012

Tuesday, February 28, 2012

Rare But Strong Together!

Tomorrow we celebrate a very important day, Rare Diseases Day! This is a world-wide day to raise awareness of rare diseases and support for those affected by them. FPIES is a rare disease and tomorrow as we join others in celebrating this day, FPIES children and families will be on our minds and in our hearts!

Since we are a crafty bunch around our house, I created a craft for B to do in honor of the day. It is a representation of the Rare Diseases Day logo. You can do it with your LO or with all of your LOs too! You can do what we did-- trace and cut out the handprints on colored paper-- or you can use paint for the handprints, or any other art media that is appropriate for age, stage and allergy. Here are the steps!

1. Trace and cut out three handprints of your child/children--- one print pink, one green, one blue. Trace a gingerbread boy/girl cookie cutter on white paper and cut out the shape.

2. Paste the green handprint laying on its side, fingers pointing to the left side of the paper. Paste the blue handprint slightly overlapping, with the fingers pointing in the opposite direction. For glue, we used those colored glue sticks-- looks purple until the glue dries. Love them!

3. Apply glue to the pink handprint and place it on the paper in the middle of the green and blue prints, but this print will be upright. Apply glue to the gingerbread cut out and place him/her in the middle-bottom of the pink handprint, upright.

5 Show off your craft!

So for all of you with small ones, this can be a fun way to celebrate the day with your kiddos. For siblings, you might want each child to contribute a hand print for extra fun, or have everyone make their own picture and then display them together, like a quilt. I made a big version with my handprints too, and B liked that we were doing them together. Solidarity, mamas and daddies!

For more information on how you can take part in rare diseases day, please visit

For more information about FPIES specific activities for Rare Diseases Day, please visit The FPIES Foundation's facebook page. TFF is an official partner of Rare Disease Day and is so pleased to be supporting such a worthwhile and meaningful cause!

Saturday, February 25, 2012

There is No Secret Ingredient

B loves Kung Fu Panda. So very much so, that the reason she got dumplings for Thanksgiving (pear dumplings) was due to her obsession with this movie. I love my girl. . .

After watching that movie for likely the fiftieth time tonight (Friday is movie night), the phrase "There is no secret ingredient," kind of stuck with me. And I thought about our kids, and us as families, dealing with FPIES everyday. My thoughts settled on "hope."

I have been rather disturbed to read some posts on a few of the support forums lately. I have seen other FPIES parents, a handful in particular that are very active in the community, publicly discrediting (and I do not use that term loosely) other FPIES parents. This disturbs me on a few levels--- first, I think "Who has time to do this?" Second, the pragmatic part of me wonders how on EARTH this is remotely helpful or useful to anyone. We have kids with a chronic illness. This is a shared reality for all of us. I know personally, when I frequent the boards, it is specifically to reach out to others, maybe help someone through a situation we experienced when B was younger, etc. I don't like or have time for drama. If what one wants to say is counteractive to the supportive nature of "support" forums, and one indeed has the time to conjure up such nastiness, I may suggest that time would be better spent perhaps by reading one's child a book. Madeline is a current favorite around here, if suggestions are needed.

The issue that bothers me most is that as parents of children with a rare, often misunderstood diagnosis, we are sometimes slammed by others, including some family and even medical professionals, in how we go about the care of our children. Obviously, there are amazing supportive and educated docs (we are very lucky to have B see some of the best!) and amazing supportive family and friends. But the nature of dealing with a rare and misunderstood diagnosis can lend itself to outside criticism and doubt, particularly when going through the initial diagnostic process. Our FPIES community is meant to be a safe place, a place free of those criticisms. And we of all people, should know that the intricacies of each child's case may be confounding and may not be "by the book." Statistics break down at the individual level, and if all of our kids were textbook in all of their symptoms, I would think that outcomes for all may fare a bit better than they currently do.

So what can the rest of us offer in these situations? What can be used to counteract this poor behavior? We can hope. Hope is the most powerful device we have-- it is what gets us through the medical testing, the endless doctor appointments, the food trials, the day to day questioning, and those awful nights that we all know too well. It is hope that we can offer our children as they deal with the most challenging aspects of this condition. The truth is this: we don't have a special medicine, we don't have a magic bullet (outside the realm of small kitchen appliances), we don't have a secret ingredient. We DO have the strength and the compassion that we can offer to one another, elements that come from navigating our own sometimes dark circumstances, elements found within the very essence of hope itself. With hope, we find each other and we find ourselves. With hope, we somehow find a purpose in all of this. With hope, we discover that although the road is often rocky and the path can be dark, normalcy, comfort and solace can and will be uncovered and nurtured through our strength and solidarity as a community. For the negativity that does exist, sadly even in our own backyards it seems, we cannot allow it to strip us of hope, but instead, we must stand up against this negativity with our continued dedication to one another's families and our continued fight for our children's cause. It is with hope and only with hope that these ideals we hold most dear are truly possible. I commend and applaud all of you parents and professionals that do this everyday.

Sunday, February 19, 2012

Corn Tortillas

Here is a simple explanation of how to make tortillas, simply using masa, water and a touch of oil to grease your skillet.

Corn Tortillas
1/4 cup masa (a form of corn flour made with chemical lime to ease digestion)
2-4Tbsp water
1 Tbsp oil

Heat oil in a non stick skillet over medium low heat. In a small bowl, add masa. Slowly add water one tablespoon at a time until you have achieved a dough that is playdoh consistency. Knead the dough until smooth and pliable. Roll out between parchment paper until tortilla thinness. Cut into shapes if desired or form into a large circle. Cook shapes in the pan-- turn occasionally. When the dough begins to bubble and brown slightly, your tortillas are done. I make small fun shapes for B and occasionally add food coloring for extra fun!


Sunflower Seed Honey Bread

This can be a breakfast bread but it is not too sweet that it could be used for "regular" bread purposes. It has a nutty, subtle sweet flavor and will be a nice addition to the elim diet roster! Enjoy!

Sunflower Seed Honey Bread
1 ½ cup sorghum flour
½ cup quinoa flakes
¼ cup millet flour
¼ cup arrowroot starch
¼ cup cornstarch
¼ cup sprouted sunflower seeds
2 tablespoon baking powder
1 teaspoon baking soda
3 tablespoons sugar
1 teaspoon salt
1 cup coconut milk + 1 Tbsp coconut vinegar
2 almost ripe small bananas + 1 tsp baking powder
½ cup honey/coconut nectar
½ cup canola
¼ cup water
2 Tbsp sunflower seeds (additional)

Preheat the oven to 350 degrees. Grease and flour a loaf pan. In a large bowl, mix all dry ingredients well. Set aside. In a small bowl, add coconut vinegar to coconut milk. Allow to rest for five minutes.

Meanwhile, mash bananas and baking powder in a medium bowl. Allow to rest for two minutes. Add in milk mixture and blend well. Add in honey, canola oil, and water in turn, blending well after each addition.

Make a well in the center of your flour mixture. Add the banana mixture to the flour mix and blend until completely mixed in. Pour the mixture into prepared loaf pan. Sprinkle 2 Tbsp sunflower seeds over the loaf and press down gently. Bake at 350 degrees F for 1 hour, turn off oven and allow to rest in oven for five minutes longer. Remove from oven and turn loaf onto cutting board. Allow to cool completely before slicing. 

Saturday, February 4, 2012

Smoothie Starters

I know, smoothies are so simple! Why on earth would you need a "starter"? Well, B "needed" some new popsicles and I am planning ahead for the elim diet (less than 6 weeks until I start) and needed some sweet, but healthy treats. Plus, she loves making smoothies (even though she won't drink them--- chokes and gags, which kind of sucks the fun out of smoothies). We freeze hers into popsicles and I store the rest in ice cube trays for--- SMOOTHIE STARTERS!

What is a smoothie starter? Essentially you make an extra thick (thicker than you would likely want) smoothie mix with safe fruits and just enough coconut (or other safe milk) to allow the blender to actually move and mix things up. Freeze it into 1oz cubes (standard ice cube tray cubes are perfect size) and once frozen, store in a freezer bag for future use. When you want to make your AM smoothie, simply throw in 2-4oz of cubes along with about a cup of your safe milk (if you want extra creaminess, you can throw in 2-4Tbsp coconut manna to the mix as well) and blend. Instant smoothie without needing to do all of the fruit prep work. Yes, you can buy something similar to this in the store, but let's face it--- there are extras in the store versions and if I am going to do an elim diet, I am going to do it carefully. And you save money this way, which is always a bonus! The recipe below made 8 2oz popsicles and 14 1.5oz cubes (I overfill my cubes and use a slightly larger than normal tray). You could probably get between 30 and 32oz of smoothie starter from this recipe, which should get you a weeks worth (or a bit more) of smoothies. B "created" this recipe (I put fruit in front of her, she dumps as much as she wants of each into the blender. I measure as we go.)

Smoothie Starter
2-3 cups cubed pineapple
2 cups cubed strawberries
2 cups frozen raspberries (I buy them in the summer for cheap and then flash freeze)
1 cup blackberries
1 large banana (if this isn't safe, I would add 1/4cup of coconut manna for the creaminess factor)
1/2 cup coconut milk

Have a small child happily dump all ingredients into the blender for you, creating a pretty pattern as she goes. This small child may sample the fruit here and there and she will reassure you that she is just "checking the temperature to keep you safe, mama," with a knowing look. Be sure to keep the power button out of reach until all ingredients are added and the lid is tightly on the blender. Blend at the highest speed, stopping to stir if/when necessary. Once fully blended, scoop out 1-2 Tbsp for your small chef to sample--- it will be very thick, almost like soft serve ice cream (a tiny bit runnier). Wait for her assessment of the creation and be ready to dump in additional fruit if needed. I also like to sneak in cooked pureed frozen spinach cubes. For a recipe such as this, I can usually get away with adding around 4oz without affecting the taste at all. Frozen pureed beets would also add a nice compliment and surely a lovely color. If you do add veggies and the taste is a little strong, banana and strawberries are excellent fruits to increase in amount to conceal the veggie goodness. All veggie additions at our house have been previously very well cooked and prefrozen.

For an adult (and for some kiddos too!) you can play around with other additions, such as adding in ground up hemp seeds, chia seeds, sunflower seeds, etc. I have even done this with roasted ground up sesame seeds. The flavors do work well with most fruits so experiment away, especially if you are trying to get this as nutrient rich as possible.

Just remember, if on an elim diet and still learning your LO's trigger foods, be sure to label in detail the ingredients in each batch of "starter" so that you don't accidentally expose your LO if something that used to be safe becomes a fail (hopefully this won't happen, but just in case). Also, if you have a smoothie-seeking spouse or non-FA child digging through the freezer, labeling YOUR or YOUR LO'S safe smoothie starters in detail, perhaps including threats of bodily harm if consumed by an unintended individual (spouse, not child! No threats for small ones!). You love to share but it is also important that you reserve enough for yourself!