Wednesday, March 18, 2015

A Rare Disease Day Challenge for FPIES

This year, in honor of Rare Disease Day, a family in the FPIES community hosted an awareness event for FPIES.  We, at the Foundation, found the event very encouraging and asked them to share their story...


Chase's FPIES Challenge started out as a way for me to help my friends and family understand what living with FPIES is all about.   Chase is 3 and by now they have all heard about Chase's 'crazy food allergies,' and some of them even know the lingo, asking about passes, fails, challenges and triggers.  A few may even know what FPIES stands for.  But hearing about it and living it are two very different things.

I challenged them to cook just one meal in the month of February (leading up to Rare Disease Day) that would be safe for Chase to eat.   Chase currently has about 25 safe foods.  I provided clear instructions, and an ingredient list.  I indicated where an ingredient was brand specific or needed to be organic.  I made sure they knew that 'processed in a facility where soy is processed' was a no-go and then I wished them good luck.

Then the questions started coming in.   Can I use pepper?  No.  Can I use spices?  Sea salt only.   Can I use chicken broth.  No!

Then the recipes started coming in.  I was blown away.   My fellow FPIES and food allergy families got it right away.   It warmed my heart that they tried to prepare meals that would be safe for our kids to eat together.  If we could magically erase the miles between us I'm sure we would have!   I was amazed by the culinary skills I never knew some people had and inspired to try some of these creations in my own kitchen.   It brought tears to my eyes when one friend had her 7-year old daughter help her make a kid-inspired safe meal, complete with a handmade menu.


Then one friend really hit home with me, a friend I haven't seen in 13 years! She told me her first attempt at apple blueberry muffins was a disaster.  She admitted she was about to just give up and skip the challenge.  Then she thought of us and thought of Chase and realized that's a luxury we don't have.  She tried again and made some amazing looking muffins.

I can't order pizza because I had a long day at work or rely on a frozen lasagna because I didn't have time to go grocery shopping.   FPIES is our life, at least for the foreseeable future.   We embrace it,  we manage it. We put on a happy face and positive attitude and thank God every day for two healthy boys and the progress Chase continues to make.   But at the end of the day it is exhausting both mentally and physically and there is no room for error.


I truly want to thank everyone who took Chase's FPIES Challenge or even those who just followed along.  FPIES can be isolating but I believe the burden is on those of us living with it to raise awareness.   Truly,  we are not alone!


This article was written by Victoria Warren.  Victoria is a television news reporter for the NBC affiliate in Boston, WHDH-TV.  Victoria is a parent volunteer with The FPIES Foundation Volunteer Advisory Board.  Follow Victoria on twitter @VWarrenon7.

Monday, March 9, 2015

Our Sensory Preferences & Mealtimes


An interview with co-authors of the newly released book “Sense-

ational Mealtimes” Denise Stapleton, PhD, Accredited Practicing Dietitian & Gillian Griffiths, Occupational Therapist.**


Mealtime should be enjoyable, yet some children struggle, and their families struggle.  Mealtimes for some families are fraught with ongoing grimacing, gagging, distress, anxiety, worry, frustration and anger. Do these phrases sound familiar?  “He won’t try new foods”. “She won’t try new textures”. “He spits food out of his mouth”.  

Mealtime problems can be a common toddler trait. However, they might be more common in children with FPIES due to negative, even traumatic, past experiences with food. It makes us wonder: how do you know when it’s more than just a fussy phase and is it going to get worse if you don’t do something about it?

What causes mealtime difficulties?


There is a long list of things that can trigger eating to be tricky.  For example; premature or complicated birth, early hospitalization, medical or developmental conditions, pain, trauma, excessive stress, reflux, vomiting, ear, throat or chest infections, allergies, intolerance's, and constipation are some of the conditions that can contribute to complex mealtimes. FPIES can interrupt and delay the process of introducing solids to an infant and can complicate a toddler’s progress with textures. Post-natal depression, anxiety and stress can also make mealtimes tricky for some families.

What can we do about mealtime difficulties?


After attending to medical needs, one of the key areas to explore in order to create enjoyable mealtimes is your own and your child’s sensory preferences.  Our sensory preferences influence what we notice, tolerate, seek, avoid and are distracted or distressed by.  Understanding preferred sensory properties of food and mealtimes might be a key.

What are sensory preferences?


Sensory preferences are the sights, sounds, and types of touch, smells, tastes, temperatures, textures and types of movement we prefer in our day.  
Sensory preferences are unique to each individual as they are based on: sensory thresholds in the brain; genetics; the surrounding environment; feelings; interactions and experiences during each day and across a lifetime (ie memories). On top of this, pain, stress, trauma, fatigue, reflux, vomiting, infections, allergies, intolerance's and constipation may make a parent or a child more or less sensitive.  
Discovering sensory preferences takes time as we may have a different threshold for each sense and the amount of sensory information we avoid, tolerate or seek more of can change during the day.  At times, parents can also project their own sensory preferences onto to their children.

How do sensory preferences affect mealtime behavior?


During mealtimes we use EVERY sense to help us notice, interact, socialize; and to eat, to use utensils and to be seated (or not).  We continually use our senses to gather sensory information from our surroundings and our body in order to ensure our mealtimes are emotionally safe, successful and enjoyable.

Our sensory preferences directly influence our thoughts, feelings, memories, interactions with others and our behavior.  If our brain detects or remembers an experience that feels unsafe, worrisome or dangerous, our body might experience a Danger Center Response (fight, flight, freeze or fright).  These strong feelings might be associated with the sensory properties of certain foods, the surroundings or interactions and can have a very large impact on mealtime behavior.

Exercise: Can you remember eating a food that caused you to feel unwell or vomit?  Can you tolerate the smell, sight, taste or texture of that food now?  How does it make you feel?  What would you do if you were forced to eat even just a little bit? How would you behave?

What we and our children experience can affect our thoughts and how we feel, and these can affect our behavior. Similarly, our behavior affects how we feel and our feelings can make us more or less sensitive to certain stimuli. As we explore in the book, it is so helpful for parents to always tune in and wonder what might have caused a child’s behavior. Ask yourself, how were they feeling, how were you feeling, what might have affected those feelings? This wondering can help us identify and do something about the potential triggers to alleviate or prevent the undesirable behavior.

How can I help my child feel safe at snack and mealtimes?


You can support your child’s ability to stay calm by taking time to "SENSE-itively" tune in to his or her cues. When you tune in to your child’s sensory preferences, you can create a ‘just right’ experience that will feel emotionally safe for everyone and hopefully bring pleasure.  Ongoing pleasurable mealtimes can positively shape a child’s mealtime behavior and the types or range of food he will eat.  
The authors acknowledge typical strategies may not have been successful for many families with ongoing mealtime difficulties. The book reinforces:
  1. That each child is incredibly unique,
  2. Parents are the experts in relation to their child; and
  3. With the new understandings that the book brings, parents are enabled to develop unique ‘just right’ strategies for their child, with the help of a supportive clinician if needed.
The authors are at the forefront of applying all the evidence in sensory processing across a lifetime. This enhances our understandings of mealtime difficulties. SENSE-ational Mealtimes is the first to enhance caregivers’ capacity for reflective functioning through the understandings about sensory preferences. The following article provides preliminary research results that strongly support the need for further research in this area. Families found the understandings in the book are a crucial missing piece of the jigsaw puzzle about mealtime difficulties: “Development and evaluation of SENSE-ational Mealtimes: a book for families with mealtime difficulties” (2013) by Denise Stapleton, Gillian Griffiths and Jill Sherriff. International Journal of Health Promotion and Education.

If your child is displaying sensory preferences and needs help, discuss this with your child’s Pediatrician, Dietitian or Therapists.   This article highlights one resource for navigating feeding issues related to sensory preferences. If you are looking to learn even more, here are some additional resources:
  1. Living Sensationally (2008) by Winnie Dunn (occupational therapist) which explains what it means to have sensation everywhere given that people are sensory beings and the world is a sensory place
  2. Just Take a Bite by Lori Ernsberger & Tania Stegen-Hanson
  3. Feeding Challenges in Young Children: Strategies and Specialized Interventions for Success Paperback by Deborah Bruns Ph.D., Stacy Thompson Ph.D. 
  4. Baby Sense (2007) by Megan Faure (occupational therapist) and Ann Richardson (nurse and midwife) helps parents understand their infant’s sensory experiences.

**Denise Stapleton is an Accredited Practicing Dietitian with many years experience in Pediatric nutrition and research. She passionately supports families with varying mealtime difficulties and therapeutic dietary needs as a private practitioner, senior community Dietitian, researcher, author and mentor. Gillian Griffiths an Occupational Therapist with extensive training in Sensory Processing and is co-director of Engaging Your Senses, providers of professional development. Denise and Gillian recently published the go-to parent guide book SENSE-ationalMealtimes and Facebook page.




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Monday, February 23, 2015

FPIES Foundation joining forces with Rare Diseases Community and Global Genes

FPIES Foundation joining forces with Rare Diseases Community and Global Genes
350-million voices to make a difference

'You are not alone.' It's a mantra of sorts here at the FPIES Foundation. You are not alone on food trials, you are not alone at 3 a-m with a sick child, and you are not alone in the emergency room desperate for answers, and we will not let you be alone!

Rare Diseases Day 2015 is fast approaching on February 28th and we'd like to highlight the fact that you are not alone, and neither are we.

According to NORD and Global Genes, a disease that affects less than 200,000 people at any given time is defined as rare. FPIES is recognized as a Rare Disease, one of 7000 recognized by the National Institutes of Health. 

A rare disease is a disease that affects less than 200,000 people at any given time. That's 350-million people worldwide who might be battling a different diagnosis, but the fight for advocacy, awareness and research is the same.



That's why we're proud to partner with Global Genes - a leading global rare diseases advocacy organization.

Executive Director Andrea Epstein says when people are starting their rare disease journey it can be daunting.  Collectively, though, she says the Rare Diseases Community can come together so newcomers feel they 'don't have to reinvent the wheel.' Epstein says, "Chances are, tools for other rare diseases may be relevant,” meaning tools for day to day living that are useful for one disorder can help out another.

Global Genes specifically offers Rare Disease Tool Kits - collaborative resources updated in real time with comments and videos, focused on awareness, daily management strategies, and more. The idea is to draw on real life experiences so the next family can immediately benefit.

Took Kits currently available or in the works include:

Epstein says, "One thing we are very proud of is we create tools that all foundations or individuals can use." She points to Global Genes 'Blue Denim Ribbon Campaign' as a way everyone can raise awareness for Rare Diseases Day.

On the heels of Rare Diseases Day, Global Genes is hosting its first ever Giving Day. 'Give Rare' is March 3rd.  It's a day for the Rare Disease Community to come together in the hopes of raising millions of dollars for their individual causes. Check out the FPIES Foundation's 'GiveRare' page here: http://giverare.razoo.com/story/Fpies-Foundation 


Epstein says, "It feels really good when you know you have helped a family on their journey and made a difference." We couldn't agree more.


This article was written, and interview conducted by, Victoria Warren.  Victoria is a television news reporter for the NBC affiliate in Boston, WHDH-TV.  Victoria is a parent volunteer with The FPIES Foundation Volunteer Advisory Board.  Follow Victoria on twitter @VWarrenon7.