Monday, December 3, 2012

FPIES: Avoiding and Addressing Oral Texture Aversion

Avoiding and Addressing Oral Texture Aversion
Written by: Annette Mestern, OTR/L

I am the mother to a two year old with Food Protein Induced Enterocolitis Syndrome (FPIES). I am also a Pediatric Occupational Therapist (OT). When my daughter was 10 months old her allergist recommended a period of time without any food and just Neocate formula to heal her system following several FPIES reactions. After just one month without food I noticed that my daughter was no longer mouthing her toys and was avoiding oral exploration with toys. Having had several hours of “feeding therapy” type education due to my career I knew that this likely would lead to texture and food intolerance when it was time for her to eat again. From working with several children with oral intolerance I knew I must spring into action and fast. Luckily due to my education I knew just what to do.

I realize that a parent without the education I have likely does not know what to do in this same situation and then has to deal with the heartache of finally being able to feed his/her child only to find that the child gags/spits out food, or will only tolerate purees and no textures. This is highly preventable. I would like to share some ways to prevent this or if it is happening address this issue. The following is a list of what I did for my daughter:

* I always supervised my daughter closely when she was using these materials *

1.     I provided her with continued opportunities to chew and mouth textured materials. Because she already started to become aversive to this I started by having her accept the materials on her lips and in the front of her mouth, then moved to the inside of her cheeks and tongue. This takes time and patience and acceptance of the materials in the mouth does not generally happen overnight.

The following materials can be ordered online and are great for this purpose; Chewy Tube, and Ark Grabber. Besides increasing oral tolerance for texture these materials when chewed strengthen the jaw and prepare it for later chewing of food. A nuk brush can be used – roll along the inside of each cheek and along the tongue. Helps to sing “row your boat” while you are doing it. A nuk brush can generally be found at Babies R Us or similar baby store in the toothbrush section. I recently purchased one in a set with an
Infa-Dent Brush, and first toothbrush. An Infa-Dent Brush fits over an adult’s finger and can be used to massage an infant’s gums.

2.     I provided her with vibration to the inside of her mouth. Vibration desensitizes the mouth if sensitive and also can increase awareness inside the mouth for those kiddos who stuff food. Vibration is great because it can serve either purpose.
The following materials work for this purpose; The Z-Vibe with Probe Tip. It is recommended that this tool be used with supervision of an occupational or speech therapist. It is a good idea to call your local Early Intervention to see if your child would qualify for help from a therapist. Oral Jigglers can be used for this purpose as well.

*I only used the items with long handles such as the Z-Vibe  and Nuk Brush with my daughter when she was strapped in her high chair. I knew she should not be crawling or walking around with those items as she could fall and they could be jammed into her throat. I kept them away and out of her reach when I was not using them with her.*

A great item that my daughter eventually enjoyed and could use daily on her own was the Infantino Vibrating Teether. I just bought this at my local store. I have bought these for my daughter and the children I work with at the grocery store, Baby Depot and Babies R Us. I find they are cheaper at the stores than online. I had to ultimately buy a second one for my daughter as the vibration does not last very long. However, this was a great tool as I could keep it out for my daughter all the time with her other toys so she could grab it whenever she was playing. There is a The First Years Massaging Action Teether that can be used as well.

3.     I had my daughter sit with myself or the family in her high chair for meals. This is usually when I gave her, her Z-Vibe so she could somehow orally participate in meals. I also had her eat frozen Neocate by spoon or fed her ice chips to work on her spoon skills and oral acceptance of a spoon. I will admit a lot of the time it was just so sad for her to sit there and not to eat, but I realized that she enjoyed being with her family at meals. It was good for her to see food, see people eating and experience the social interactions that come with meal times. As hard as this was for her family members, it worked to her great benefit when it was time for her to eat again.

4.     I provided my daughter with these materials daily. It may feel like a lot to do this daily, but if you are doing it at mealtimes when you would normally be feeding your infant/toddler, than it works.

When my daughter was 14 months old and allowed to eat again, she was happy to do so and she had no oral aversions. Every food we gave her she would at least try and was a happy eater. She also within a few weeks of eating began using her spoon independently.

My hope is that the information I provided will help you to help your child to become a happy eater and enjoy meal time. Our little ones, at least my little one, had so much negativity and suffering when it came to food, that I am thankful I had the education to help her so that she can now enjoy her food or the several that she can eat.

Listed are the techniques I used with my daughter, but should not replace any guidelines specific to your child provided by his/her pediatrician or therapist.

Annette Mestern is an OTR/L and the mom to a sweet two year old with FPIES

Sunday, November 11, 2012

"Alone we can do so little; together we can do so much." ~ Helen Keller

At The FPIES Foundation, we believe that forming strong bonds with our local and global communities means greater strength for supporting our children and families. We believe that it is only by partnering with our community that we can effect change. Together, we can make a difference in the lives of FPIES children and their families.

But how can you make a difference? How can you help us to build this foundation of resources and support?

The FPIES Foundation recognizes donations of time and talents!  The talents of one mother whose daughter has FPIES enabled us to release a video on YouTube for Food Allergy Awareness week 2012-- thank you, KatieLou Photography!  Beautiful photographs designed specifically for our new website by Photographyby Sarah M, capturing the essence of the lives of those living with FPIES, were also contributed by a mother whose daughter has FPIES.

The FPIES Foundation blog and website aim to continue to put a voice to this rare allergy. By writing and sharing your story for the Inspiring Family Stories page on the website, you can help contribute to that voice. Putting a story behind your experiences helps others to not feel so alone and can inspire others to reach out as well!

If you are a crafter, our Hugs for Heroes program continues to accept donations of your talents. Your creations can give comfort to a child with FPIES!

Let's continue to build this foundation of caring together! The FPIES Foundation is an entirely volunteer-based organization and does not keep any paid employees– all manpower is unpaid. Any efforts to support the activities of The FPIES Foundation are enormously appreciated, as we strongly value anyone reaching out to FPIES families. 

The journey with this diagnosis can be daunting but the connection to one another can certainly help the load that we all carry to feel a bit lighter. When you are ready and able to reach out, we have opportunities available to suit various interests and availability. Contact us at for more information-- we can't wait to hear from you!

This post was written by the Executive Board of The FPIES Foundation 

Thursday, August 30, 2012

The FPIES Foundation Celebrates 1yr. Anniversary!

NON PROFIT TO SUPPORT PEDIATRIC PATIENTS WITH RARE DISEASE, RE-LAUNCHING WEBSITE FOR ANNIVERSARY, CINCINNATI, OH, AUGUST 27, 2012: The FPIES Foundation, headquartered in Cincinnati, OH, is announcing the launch of their new interactive web site on Monday, August 27, 2012, to celebrate the organization's one-year anniversary. The organization’s executive board identified a dire need for additional support resources and has significantly increased the amount of patient education tools on the new site to improve educational and practical resources for families and medical professionals alike. 

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 was formed in August 2011 to provide support for families and medical professionals navigating this rare disease. The FPIES Foundation's new web site will offer an expanded toolbox, a physician locator, an expansive glossary, and many more multimedia resources.

The FPIES Foundation is comprised of an executive board and a medical advisory board, with board members located in communities nationwide. 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. “We provide a network of caring-- the support you need to support your child” – Joy Meyer, founding member and Chair.

This post was written by the Executive Board of The FPIES Foundation 

Friday, May 18, 2012

Celebrating Food Allergy Awareness Week 2012

The FPIES Foundation presents an awareness slideshow for FPIES (Food Protein Induced Enterocolitis Syndrome) for Food Allergy Awareness Week (FAAW) 2012. The video stars some adorable children who just happen to have FPIES. For more information on FPIES visit: 

Video created by: Katie Lou 

Music by: Kevin McLeod. Eternal Hope

This post was written by the Executive Board of The FPIES Foundation 

Monday, May 14, 2012

How to Help an FPIES Family Today

Dear Family and Friends,
Thank you for taking the first step and trying to learn more about what life is like for our little one with FPIES and for us as a family. We do understand that sometimes you might not know what to say or do, and that you often wish you knew what you could do to help. Help doesn't have to be grandiose, complex, or expensive. The effort behind it can mean more to us than you may ever imagine. To get you started, here are some simple but very meaningful ways that you can help an FPIES family today:

Family Life:
We strive to maintain our home as a safe foundation. For us, this means keeping a nurturing environment for the siblings as well as for our child with FPIES. Play dates at our house, where the environment is set up for the safety of our FPIES child, are just as important as play dates/outings away from the home, even if we ourselves are unable to provide that for siblings due to the needs of the child with FPIES. When you offer to include my non-FPIES children on one of your family outings, this can help our children to feel included and to experience a sense of age-appropriate “normalcy” outside of the FPIES realm of their sibling.
We may spend a great deal of time going to medical appointments, some of which may even require extensive travel. This can interfere with family time we may have otherwise spent going to museums, parks, and so on. Helping us to find ways to schedule family time can aid us in further supporting the nurturing environment of our home and in reclaiming our family's foundation.
Spending time with all of our children is important to our family, and it is essential to touch base with each of them regularly, particularly when we may have been in a crisis situation with our little one diagnosed with FPIES. Offering to sit with our other children while we spend some needed 1:1 time with each individual child can help our children to reconnect and feel more secure during the "storm" that often accompanies reactions and/or other medical complications of their sibling.
Around the House:
Simple tasks, like grocery shopping, may be more extensively time consuming for our family due to constant label reading and seeking out specialty products that may be safe for our child with FPIES. When you offer to watch our children while we as parents attend to the shopping, you not only give our children a “break” from this task but also enable us as parents to have better focus on this activity.
When our child with FPIES experiences a reaction, knowing that we have family and friends to rely on to help with the other children can be an enormous relief to us as parents. Volunteering to be a part of our family “emergency plan” by coming to our house to stay with siblings while we accompany our child with FPIES to the emergency room or by picking up children from school when we need to be at unplanned doctor's appointments can help us to maintain a secure and calmer home environment for all members of the family.
Medical Aspects:
The medical care involved for our little one may be overwhelming and even scary at times for all members of our family. As a friend or family member, reaching out to simply listen to us can be an enormous comfort. Taking care of our other children while we attend to our little one undergoing procedures can ease our already anxious minds. Cooking a meal for those family members not on a restricted diet can help us to spend more time focusing on helping our little one to better cope and heal. Offering to accompany us on a medical appointment to play with our child or to take notes on what the specialist may say can help us to better understand the doctor's assessment and directions for medical care for our little one.
Social Life:
Play dates, dinner parties, and even preschool can be anxiety-filled for our family. We do want to spend time with you and our other family and friends and do enjoy a fun night out, but we often don't know how to make it safe enough for our little one and low-stress enough for the rest of our family. Arranging for play dates to be at our house instead of popular “tot spots,” organizing multiple family outings that are food-free, or helping us to interview caregivers and/or preschools that might be suitable for our child based on his/her special needs can be great ways to help our family and especially our little one feel included as well as to help us connect with all of you in a low-stress environment.
The Learning Curve:
Adapting to life with FPIES can be a steep learning curve, depending on what aspects are involved in our little one's day to day care. Some children require prescription formula, some need specialized medical equipment, and all children with FPIES require some dietary restriction. Helping our family to search online or through cookbooks for safe and family friendly recipes would be greatly appreciated. Pouring through insurance research with us to ensure coverage for formula or needed medical equipment for our children is not only helpful in a practical sense, but also in an emotional sense, as navigating this unfamiliar diagnosis can often feel very isolating.
No One Needs to Go Through This Alone:
Above all, the most important resources that you can give an FPIES family include your understanding, a shoulder to cry on, and an ear to listen. No one needs to go through this alone. The simple knowledge that there will be a comforting voice on the other end of the phone or that a friend can stop by and just “be” with your family during troubling times--- these are the building blocks that support our family, which in turn enable us to better support the ones we love.
Thank you,
An FPIES Family

This post was written by the Executive Board of The FPIES Foundation 

Tuesday, March 13, 2012

What is FPIES?

This post was written by the Executive Board of The FPIES Foundation 

Thursday, March 1, 2012

Hugs For Hero's!

Are you crafty? Interested in using your skills to reach out to struggling FPIES kids?

The FPIES Foundation is looking for volunteers to contribute to it's newest initiative, 'Hugs For Heroes'. We are be collecting handmade lovie blankets, stuffed animals, and super hero capes to distribute to FPIES children in need of a little bit of extra comfort during in-hospital procedures. 

This ongoing program makes it easy to contribute as you are able, but will make a big impact on little FPIES heroes! 

For more information about how you can help, please contact us:

This post was written by the Executive Board of The FPIES Foundation 

Wednesday, February 29, 2012

What is a Rare Disease?

"In the U.S., a rare disease is one that affects fewer than 200,000 people. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, as many as one in ten Americans are suffering from a rare disease."  from: Rare Disease Day 2012 

How are Families Affected by Rare Disease?
1. Financially
2. Emotionally (feeling isolated and overwhelmed)
3. Physically 

What Can YOU do to Help Families Affected by Rare Disease?
1. Provide a sounding board, listen
2. Involve the family in social activities (often families feel unable to engage in typical social gatherings)
3. Help to raise awareness

Rare Disease Day Visions of Solidarity: "Alone we are rare. Together we are strong". 

In honor of Rare Disease Day, The FPIES Foundation is launching 'Hugs for Heroes;' a new initiative to support FPIES Families. We will be collecting volunteer-crafted lovie blankets, stuffed animals, and super hero capes to distribute to FPIES children in need of a little bit of extra comfort during in-hospital procedures. This ongoing program makes it easy to contribute as you are able, but will make a big impact on little FPIES heroes. 
For more information about how you can help, please contact

“Rare but strong together”. Feb. 29, 2012 is Rare Diseases Day.  Join us in raising awareness to FPIES! 
Rare Diseases Day Handprints Across America

This post was written by the Executive Board of The FPIES Foundation 

Tuesday, January 31, 2012

How to claim and benefit from special foods tax breaks

Tax season is approaching. A fellow FPIES family has shared this wonderful resource for some important information that may be helpful to your family. 

"The IRS extends a tax relief in cases of food allergies. The tax man will allow you a tax break if you prove that you are usually propelled to purchase special foods to contain your diet under certain conditions.
To benefit from this tax break, there is a criterion that you must meet before incorporating the special food costs as part of your medical expenses."
  from: How To Claim and Benefit From Special Foods Tax Breaks

This post was written by the Executive Board of The FPIES Foundation