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  • Home
    • DISCLAIMER
  • Blog
  • Recipes
    • Breakfast
    • Baked Sweets >
      • Cookies, Bars and Granola
      • Cakes, Breads and Pies >
        • Bananarama Tigernut Oat Muffins
        • Healthy Brownies
        • Chocolate Banana Bread
    • Non-Baked Sweets
    • Quick Eats
    • Healthy Meal Ideas
  • Reviews
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  Advocate Uniquely

A toddler with FPIES and Rare disease

2/28/2019

3 Comments

 
     Today is Rare Disease Day did you know? What is a Rare Disease you may ask yourself? One rare disease may affect only a handful of patients in the EU (European Union), and another may touch as many as 245,000. In the EU, as many as 30 million people may be affected by one of over 6000 existing rare diseases. 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative. 50% of rare diseases affect children. Did you know that A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000. A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time (Source: Rare Disease Day).
​
       Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases. (Source: Rare Disease Day)

     So on behalf of Rare Disease Day Im sharing our sweet Aubries story. To advocate to all that give me stares when she drinks the only safe thing for her out of a bottle, to all the moms that speak under their breath making smart remarks about how lazy of a mother I am. Enjoy and please share.
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Living with fpies was a new allergy to our family

     All I see when I look at this picture is a happy, healthy and beautiful toddler. I don't see FPIES, GERD, EOE, food allergies or her daily struggles and unexplained pain, neither does anyone else that sees her sweet face. This is a very emotional post for me, a post i've been sitting on for over a year. A post I wanted to write and share, but nothing I wrote justified what we as a family where going through. Im not going to lie this post draft stayed as a blank draft for over a year. I think I was hoping to write up a happily ever after blog of how our daughter had outgrown her FPIES, unfortunately that's not the case, but i'm sharing in hopes of helping some going through a similar situation.
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11/16/2015 the day Aubrie was born
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6 week old and 1 pound under birth weight

What is FPIES?

     Have you ever heard of the term FPIES? FPIES stands for Food Protein-Induced Enterocolitis Syndrome (FPIES) is a type of food allergy affecting the gastrointestinal (GI) tract. Classic symptoms of FPIES include profound vomiting and diarrhea. In some cases, symptoms can progress to dehydration and shock brought on by low blood pressure and poor blood circulation. 
​     
There are differences that set FPIES apart from a typical food allergy. Most food allergy reactions happen within minutes or shortly after coming in contact with a food allergen. FPIES allergic reactions are delayed, occurring within hours after eating the trigger food. In most allergies, the immune system overreacts to the allergen by producing Immunoglobulin E (IgE) antibodies. FPIES reactions are thought to involve cells of the immune system rather than IgE antibodies.

Diagnosing FPIES

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     Symptoms of FPIES overlap with other medical conditions so it's best to seen by a board certified allergies/ immunologist or a  Gastroenterologist. There are no laboratory or skin tests to confirm FPIES it's based on history, symptoms and physical examination, detailed history, including foods eaten and a timeline of reactions.
     Even though we were lost and had many questions when our 1 month old baby was admitted to the hospital for FTT (failure to thrive) we didn't have to endure what most families do to find/ get a diagnosis. Most families deal with the misdiagnosing,"it's a bug going around", going from doctor to doctor searching for an answer, test after test, multiple emergency room visits and hospitalizations. Don't get me wrong she was sick, she looked sick, when we left the hospital she lost some weight which is normal, but she wasn't gaining her weight back. We went in for our 1 week check up and she was down 1 pounds from when she was released from the hospital, our pediatrician assured us that it could be that my milk supply wasn't completely in yet so he didn't seem to alarmed, but asked me to go top 8 free to see if that solved the problem. We were scheduled to come into the doctors daily to weight Aubrie and the scale kept dropping. Aubrie was down 2 lbs, I was already on such a limited diet there wasn't any other option than to admit her into the hospital. Her pediatrician called in a bed and little did we know that we would be staying there close to 2 weeks.

     Test after test, day after day and still no answers. A lactation specialist was assigned to me. Was it my milk she couldn't have? But they say no one is allergic to breast milk. Doctors tried all different types of formulas and nothing was  making her gain weight. She was pale/ yellow, she wasn't happy, she threw up and pooped blood every feeding, she wasn't sleeping, she was crying all the time. What was going on, no one was giving us answers. The only thing being said to us is, "If this doesn't work she might need a feeding tube." What?! What was going on with our sweet baby. Finally a new GI as assigned to her and she nailed it in the head by saying, "I think she might have FPIES, so we are going to put her on Neocate Infant and she how she does." This was our last resort, we waited, not vomit, no crying, no poop. She was weighed the next day and she had gained a couple ounces. I know that might not seem like a lot to you but it was to us. It meant progress, her body was accepting something. We were forever grateful and will always be. We got up every 2 hours for 3 years at night to feed her, i'm tired all the time, but it's all worth it. 

     3 years later and many food trials, hospital stays and still no safe foods, we are all still thankful for Neocate Infant, the only thing keeping her going, helping her grow, thrive and meeting all her milestones. I don't wish for anything other than a CURE, a cure for all who suffer from a Rare Disease. Please be compassionate and loving to all moms, we never know what they are dealing with behind closed doors.

     Just a month ago she started sleeping through the night with no feedings until about 6 A.M in her big girl bed! She will be starting pre-school in the fall and I have already reached out if they could accommodate her feedings on demand during school and they said yes. I will be sharing that experience with you then, so stay tuned.

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Aubrie under 2 pounds her birth weight
3 Comments

how to support brands that support healthy soil

2/27/2019

2 Comments

 
     When it comes to fighting climate change, it can be difficult to understand how to have the biggest impact. Hear from three experts who offer advice on how you can support regenerative and organic agricultural practices by supporting food brands that walk the talk.  
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Art Credit: New Hope Network
     Climate change is a global issue, and we can all do our part to combat it. By supporting natural products brands, specifically, you can help mitigate the risks by championing healthy soil and carbon sequestration. Supporting these practices not only helps protect our planet, it also shows that you take your responsibility as a steward of the Earth seriously. But you can’t just talk the talk—you have to act. How? Three Fixers offer excellent advice.
     Sustainability Expert: Shauna Sadowski
“With up to one-third of global greenhouse gas emissions coming from the food system, and 80 percent of those emissions stemming from agriculture, the biggest opportunity for food companies to support healthy soil and carbon sequestration is through their connections to farms. I recommend supporting brands that work with farmers and support better agriculture with their purchasing power.”
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Photo: Shauna Sadowski, head of sustainability,
Natural & Organic Operating Unit at General Mills
     “Support carbon farming, recognized globally as a solution to fight climate change. This regenerative agricultural practice helps move carbon from the atmosphere and put it back into the soil. The pasture grasslands of an organic dairy farm are an ideal environment to implement carbon farming practices. In addition to reversing climate change, carbon farming practices also work to improve crop and pasture productivity. When soils have more organic matter, they provide proper nutrition and naturally increase the volume of pasture production. And with increased pasture production, cows have more nutritional-rich grasses, allowing farmers to reduce outside feed costs.” Regenerative Farmer: Albert Straus
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Photo: Albert Straus, organic dairy farmer
and founder and CEO of Straus Family Creamery 

     Regenerative Farming Advocate: Sara Harper
“One of the best ways to support healthy soil and carbon sequestration is to support brands that work directly with farmers who uses regenerative practices or can share how they are working to increase soil health.” 

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Photo: Sara Harper, founder and CEO of Grounded Growth,
which forges partnerships between food companies, farmers
and consumers that promote regenerative farming practices.

     “This post was provided by New Hope Network. I am a member of the New Hope Influencer Co-op, a network of health and wellness bloggers committed to spreading more health to more people.”
2 Comments

    Author

    I'm Stephanie, mother of 2 daughters. I'll be sharing my day-to-day life and give you insight on how my family and I function.

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