Food Allergy Living Blog




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Enriching Your Family’s Food Allergy Journey

Posted 7.1.15 | Nutrition Specialist

By Kimberly Pellicore, The Food Allergy Mom 

Kimberly has celiac disease and is a proud mom to two children, one of whom has severe, multiple life-threatening food allergies and asthma.  After years of being largely dissatisfied with the lack of credible online and local support systems, she established thefoodallergymom.org to offer parents and caregivers of children with celiac disease, food allergies, and asthma a POSITIVE support network. Follow her on Facebook, Twitter, and Pinterest.

THAT day— the day before I took my child to the allergist and they sent us home with an epinephrine autoinjector and a food allergy diagnosis— I was a regular mom kissing boo-boos and inciting laughter.

The next day, life looked and felt different…for me and my son.

Food allergies?  No one in my family had food allergies, or my husband’s that I was aware of.  How was this possible?  Could the test have been wrong?  What on earth was I going to feed my child from this point forward?  Would this diagnosis affect his growth?  How would these new dietary restrictions impact his nutrition?

Do these thoughts sound familiar?  For me, it signaled the starting line.  Like it or not, I was running a marathon and it was time to start thinking strategy.

Here are 10 proactive strategies to employ in your food allergy journey:

1.       Breathe:  You and your child are the exact same people you were before this diagnosis.  Your love for each other has not changed.  Give your child a warm cuddle to make sure he/she knows it.

2.       Set Boundaries:  Food allergies absolutely cannot define you, your child, or your family, unless you allow them to. 

3.       Make A Food Allergy Action Plan:  Be sure the plan is approved and signed off on by your child’s allergist.  Keep the hard copy for yourself and make additional copies for other caregivers of your child.  Not sure where to start?  Food Allergy Research & Education (FARE) has an excellent example here.

4.       Learn To Read and Understand Ingredient Labels:  Learn how to scan and read ingredient labels so you can buy and stock up on safe foods.  Not sure how to correctly read a label?  For a clearer explanation, visit FARE’s website.

5.       Educate Yourself:  When looking for information, it is crucial to find accredited, credible, and positive resources.  A few of my favorites are Food Allergy Research & Education (FARE), Kids With Food Allergies (KFA), Asthma and Allergy Foundation of America (AAFA), and Allergic Living Magazine.

6.       Get Familiar With Your Child’s Prescriptions:  Now that you’ve filled your child’s prescriptions, learn how to properly use them and make sure others who care for your child know how to use them as well.  Some companies even offer instructional apps for your mobile devices.

7.       Get To Know Your Allies:  If you find a product that plays a major role in your food allergy journey, take time to visit the company’s website and social media outlets as they often offer additional tips and recipes.  For example, you can buy Neocate formula at the store, but only if you visited their website would you find that they offer a food allergy cookbook.

8.       Be A Role Model:  Your child, no matter his or her age, is watching your reactions closely. This means it is okay to show some frustration, as long as the child also sees you resolve it.  It means remaining calm (or at least faking calm) in a food allergy crisis situation so the child does not experience additional panic.  It means living life with a smile, even on the hard days.

9.       Find A Confidant:  Every parent and caregiver needs and deserves a caring support system.  Enlist a friend to lend his or her ear when you need to regroup and talk things out.

10.   Repeat:  The food allergy learning curve is forever changing and a caregiver’s education is never complete.  This is not a burden, but a gift, as scientific breakthroughs often change our food allergy journeys for the better.

I’ve been utilizing the above steps for more than 10 years and I continue to walk the food allergy journey daily with my son.  So, how has life changed?  It hasn’t…not really…thankfully.  I’m still just a mom who loves her sweet son- a boy who loves Legos, lives life to the fullest, has a great smile, and, oh yeah, lives with food allergies.


Happy Birthday America!

Posted 6.30.15 | Nutrition Specialist


The Fourth of July - Independence Day for America - is celebrated with patriotism, parades, fireworks and food. Outdoor food activities like picnics and barbeques are part of the day’s tradition and are fun for everyone. If you have food allergies though, caution is necessary. Here are some tips for celebrating worry free:

  1. You never know what might be leftover and clinging on public grills. Before using them, cover them with heavy duty aluminum foil or, better yet, use a disposable grill cover or aluminum pan to avoid potential contamination with allergens.
     
  2. Like a public grill, the public picnic table can also be risky. Consider using a festive, disposable table cloth as well as dishes and utensils. Not only are they worry free, they are fun and easy. Don’t forget sanitizing wipes too, which can be used on most any surface.
     
  3. Potluck-style meals are popular at picnics and barbeques. You don’t always know if foods prepared by others are truly free of allergens and safe. Here is a reference for recipe substitutions that might be useful for some traditional picnic foods that you can share this with folks responsible for food preparation. http://www.kidswithfoodallergies.org/page/recipe-substitutions.aspx
     
  4. Food labels are a good idea and often seen at celebratory gatherings that include a lot of people and food. If you’re preparing a dish, it’s a good idea to include common allergens on the label. Also, why not have some fun with food allergy labels? http://www.kidscanhavefun.com/food-allergy-printables.htm - This site offers ideas to use as stickers, labels, and tags and there are options for other major holidays too.
     
  5. You may want to bring your own food to the festivities, just to be safe. Check out these sites for ideas:
  1. Some excellent ideas and resources can be found in our past Food Allergy Living blog posts. Here are some that have relevance to celebrating the 4th of July:

Happy Birthday America! What are you doing this year to prepare and have fun enjoying Independence Day?

-Jody L. Benitz, MS, RDN

Image from Beverly & Pack


A New Use for Neocate Nutra!

Posted 6.16.15 | Nutrition Specialist

Oral Budesonide, a Steroid Medication, Mixed withNeocate Nutra

For those of you who are not familiar with Neocate Nutra, it is the first and only hypoallergenic, amino acid-based semi-solid medical food. It contains essential vitamins and minerals to promote balanced nutrition in children and infants over 6 months of age with cow milk allergy, multiple food protein intolerance, eosinophilic esophagitis (EoE), short bowel syndrome (SBS) and other gastrointestinal conditions.

While an elemental diet or an elimination diet can be used to manage EoE, sometimes steroids are used; at this time no medication has FDA approval for management of EoE. Steroids, like oral budesonide, have been shown to be effective in managing EoE for more than half of patients. However, steroids may not be the best long-term solution for everyone. Children and adults who use steroids for EoE may mix the medication recommended by their physician with something that causes it to thicken, so it can help to coat the esophagus with the steroid.

The original research of oral steroids for the management of EoE used Splenda as the means of administration. However, between June 2008 and June 2013 researchers in the Eosinophilic Gastrointestinal Disorder program at Boston Children's Hospital conducted a study that showed oral budesonide mixed with Neocate Nutra is as effective as oral budesonide mixed with Splenda at managing EoE in children. The researchers concluded that Neocate Nutra is an effective and palatable mixing agent to create a thick budesonide mixture for families who prefer not to use the standard recipe with Splenda. The cost of the mixture with Splenda vs. Neocate Nutra is comparable.

Please visit this link to see the research abstract for the Boston Children’s Hospital study: http://www.ncbi.nlm.nih.gov/pubmed/24821535

If you would like to know the recipe for mixing oral budesonide with Neocate Nutra that was used in the team's research, ask your healthcare professional. If they don’t have the recipe, they can contact Nutricia North America for a copy of the recipe.

-Kathleen Smith, RDN, LDNy

Reference: Rubinstein E, Lee JJ, Fried A, Lofvineneko, T, Ngo P, McDonald D, Hait EJ. 2014. Comparison of delivery vehicles for viscous budesonide to treat eosinophilic esophagitis in children [Abstract] Journal of Pediatric Gastroenterology and Nutrition, 59(3):317-20.

Splenda is a registered trade mark of McNeil Nutritionals, LLC


Allergy-Friendly Birthday Party Recipes and Activities

Posted 6.11.15 | Nutrition Specialist


Are you hosting a birthday party for your food-allergic little one, or maybe you’re expecting food-allergic guests? No need to reinvent the wheel! In this blog, you’ll find links to several blogs we’ve previously created which include a number of allergen-free party activities and recipes/snacks!

Recipes

We like some of these recipes so much that we’d even serve them to non-allergic guests. Nobody would know the difference!

Here’s a delicious alternative to your traditional birthday cake:

Is your child receiving his/her nutrition via a feeding tube and unable to eat by mouth? Check out this “foodless birthday cake” that our colleague Mallory created for her sister:

If you’re a parent to a child who does not have food allergies, however would like to learn more about food allergies in order to host a “food-allergy friendly party”, try reading this blog:

This post has it all, including information on hosting a party with guests who have food allergies, sending your food-allergic child to a party, and various recipes:

 

Non-Food Activities

In our society, we tend to center most of our celebrations around food, however this does not have to be the case! We can enjoy our birthdays (and any other celebration) without involving food at all! Check out these links for non-food related party activities:

These web sites suggest party activities for school celebrations; however these ideas can easily be adapted for home celebrations as well!

How have you celebrated your little one’s birthday in an allergen-friendly way? We’d love to hear your ideas!

-Kendra Valle, RDN

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Image by ND Strupler


Frozen Neocate Pops

Posted 6.8.15 | Nutrition Specialist


Who doesn’t love an ice cold treat on a hot summer day? Finding a frozen allergen-free treat can be a challenge. However, we’ve created a delicious allergen-free frozen treat for you or your little one to enjoy…frozen Neocate pops! We found a fabulous ice cream mold to use with our liquid Neocate products. The result...frozen Neocate in the shape of an ice cream cone! This can be done in just a few simple steps:

1)      Shake and open your Neocate drink box. Separate the two pieces of the ice cream mold. Flip the clear piece of the ice cream mold upside down, and pour Neocate into the clear piece.
2)      Place the bottom piece of the ice cream mold (the cone) on top of the clear ice cream mold. Keep the ice cream mold upside down.

3)      Place ice cream mold in the freezer for at least 3 hours.

 

 
4)      Remove frozen ice cream molds from the freezer and allow frozen Neocate pops to sit for 1-2 minutes (this will make the removal of the clear piece a little easier).Description: C:\Users\valleke\AppData\Local\Temp\notesE8B3C6\FullSizeRender.jpg
5)      Remove the clear piece of the ice cream mold and enjoy!

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There are many ice cream molds available however the one we used is from a company called Tovolo (http://www.tovolo.com).

You can even take these pops to the next level and add some color by rolling them in colored powdered sugar! Or add a “safe food” to Neocate before freezing. For some this may be fruit juice or chopped up fruit such as strawberries or mango. This would be a great opportunity to get your little ones involved!

Frozen Neocate that thaws may discolor and/or separate therefore we recommend you enjoy your frozen pop shortly after removing from the freezer.

It is important to note that freezing Neocate products can affect some nutrient levels: The nutrition information on Neocate packaging reflects the nutrient levels when prepared as directed on the packaging. Healthcare teams may allow some Neocate servings to be frozen to help meet a Neocate goal for certain patients, but this is a case-by-case decision. Ask your healthcare team for advice before you prepare Neocate any way other than as directed on the packaging. Your healthcare team should advise you how to store and how long to keep frozen Neocate products.

Have you tried this before or done anything similar with your Neocate products? We’d love to hear from you!

Kendra Valle, RDN


Preparing Your Child with Food Allergies for Summer Camp

Posted 6.4.15 | Nutrition Specialist

Summer camp season is right around the corner! For the nearly six million children in the U.S. with food allergies, it is important that camps have established food allergy policies. We understand that it takes a little bit more prep and work to send your child off to camp when they have food allergies. Therefore, we are here to make your life easier and have provided some tips and information to help ensure that your cutie has a safe and fun camp experience.

·         Consider enrolling your child at a camp that is designed specifically for children with food allergies.  Food Allergy Research & Education (FARE) provides a thorough list of 2015’s “Food Allergy-Friendly Camps.”

·         Notify the camp of your little one’s food allergies by filling out and providing them with FARE’s Food Allergy & Anaphylaxis Emergency Care Plan.

·         Watch Kids with Food Allergies’ free educational webinar called "Off to Camp with Food Allergies", which includes information on: 

·         How to choose a camp

·         Questions to ask the camp staff

·         How to store epinephrine at camp

·         Food allergy management at camp

·         Educate your child on how to properly manage their food allergies at camp and ensure that they are aware of:

·         Safe and unsafe foods

·         Strategies for avoiding exposure to unsafe foods (i.e. NEVER trade food with other campers)

·         Symptoms of allergic reactions (i.e. NOT to go off alone if symptoms are beginning);

·         How and when to tell an adult about a possible allergic response

·         How to read a food label (if your child is younger, plan with the camp how to handle this)

·         How to use epinephrine 

Feel free to share with us any other resources that you have used in prepping your little one with food allergies for summer camp!

Have a great summer!

-The Neocate Team 

 


Satisfied YOU, Happy US!

Posted 6.3.15 | Nutrition Specialist

For more than 25 years, we’ve been working to meet the changing nutritional, developmental and social needs of children with food allergies. We have always encouraged our community to be strong and not let food allergies get in the way of everyday life. Neocate has stepped in, and tried to make this journey easier for kids and their families with food allergies.

We wanted to reach out to all the members of our community and extend a huge THANK YOU for all of your love and support. We receive messages from all around the world that thank us for being the only age-specific range of amino acid-based products which has proven to be effective in the nutritional management of food allergies and associated GI conditions. 

Your testimonials positively encourage us and reinforce the strong support Neocate receives from the food allergy community. By sharing your little one's success story of how Neocate has helped with their food allergies, you can help raise awareness about these conditions that still remain unknown to a few. Parents need to be informed that diagnosis and relief are possible. Most of all, it will give real hope to other families who are facing similar difficulties.

 

 

We promise and assure you that your story will be treated with respect on our Neocate website, our Food Allergy Living blogFacebook page and other public education materials. We would also love if you shared fun photos of your little ones with us and our community. Pictures help other parents like you see the difference Neocate can bring to their children.

Please submit testimonials and your cutie's pictures here. We can’t wait to hear and share your Neocate story! 


New Neocate Email Sign Up

Posted 6.2.15 | Sarah O'Brien

In order to keep you up-to-date with allergy and Neocate product news we've added a new email sign up feature to Neocate.com. Sign up with us to stay up-to-date on allergy friendly tips such as:

Sign up today to have Neocate product news and updates delievered right to your inbox!

To sign up, go to Neocate.com, find this "Email Sign Up" box

- Sarah


Find Help Here – Some Useful Links

Posted 5.29.15 | Nutrition Specialist


We know that managing food allergies is very challenging and you need as much information and help that you can find!  In order to assist you, we have compiled a list of resourceful food allergy-related websites including educational sites, blogs, advocacy groups and nonprofit organizations.


Help for Parents

Kids with Food Allergies is a nationwide nonprofit organization offering online food allergy support groups for families raising children with food allergies. Parents love their online food allergy support groups, information, news, and allergen-free recipes.

GIKids provides easy to understand information about the treatment and management of pediatric digestive conditions and nutritional disorders for children and parents.

Education and Advocacy Solutions, LLC provides an educational resource for parents, advocates, and school personnel who seek accurate and current information about advocacy strategies. Their mission is to promote social normalcy, safety and advocacy for children with food allergy, asthma and other special healthcare needs.

Go Dairy Free is a website for information on the dairy-free diet. A variety of dairy-free recipes and product reviews are available.

A Mother's Journey is an informational site for parents to learn about food allergies. Resources provided can help parents talk to their child's doctor about potential food allergies.


Eosinophilic Disorders

CURED is a not for profit foundation dedicated to those suffering from eosinophilic enteropathy, which includes eosinophlic esophagitis, eosinophilic gastroenteritis, eosinophilic colitis and other eosinophilic disorders.

APFED is a non-profit organization dedicated to patients and their families coping with eosinophilic disorders. APFED strives to expand education, create awareness, and support research while promoting advocacy among its members.


General Allergy Information

Food Allergy Research & Education (FARE) is a nonprofit organization that was formed in 2012 as the result of a merger between the Food Allergy & Anaphylaxis Network (FAAN) and the Food Allergy Initiative (FAI).  FARE works on behalf of the 15 million Americans with food allergies, including all those at risk for life-threatening anaphylaxis. 

Asthma and Allergy Foundation of America (AAFA) is dedicated to improving the quality of life for people with asthma and allergic diseases through education, advocacy and research. AAFA provides practical information, community based services and support to people through a network of Regional Chapters, Support Groups and other Local Partners around the U.S.

The American Academy of Asthma Allergy & Immunology (AAAAI) is the largest professional medical organization in the United States devoted to the allergy/immunology specialty. The AAAAI is devoted to the advancement of the knowledge and practice of allergy, asthma and immunology for optimal patient care.

The National Institute of Allergy and Infectious Diseases (NIAID) is the lead Institute at the National Institutes of Health for research in food allergy. They support efforts to help better understand, prevent, and manage this disorder. NIAID supports food allergy research, from basic research in allergy and immunology to clinical trials that test new strategies to treat and prevent food allergy.


Reflux

The Reflux Rebels is a site comprised of the experiences of caregivers who share the common thread of infant reflux. It is here to provide some basic information that has been of help to other families as they advocated for the most effective treatments for children.

InfantRefluxDisease.com offers a website and support group for parents living with, treating and managing, a baby or child living with infant reflux and/or pediatric GERD.


Crohn’s and Colitis

Crohn's & Colitis Foundation of America is a non-profit, volunteer-driven organization dedicated to finding the cure for Crohn's disease and ulcerative colitis.

 

What websites have you found helpful in answering questions or providing information about managing food alleriges?

-Kathleen Smith, RDN, LDN

Image source


How to Be Prepared: When You Have a Child With a Severe Food Allergy

Posted 5.28.15 | Nutrition Specialist

Grennan Sims is a registered dietitian and the Nutrition Education Coordinator for the Hickman Mills C-1 School District in Kansas City, MO.  Grennan has worked in school nutrition for nearly 20 years, developing healthy school meals and teaching children ages 3-18 years about making healthy food choices.  She’s also the mother of a child with severe food allergies. “I’m on a mission,” she says, “a mission to protect the lives of the children we serve in school nutrition.  I know what it’s like to worry about sending your child with a food allergy to school.  My goal is to empower school nutrition professionals with the knowledge and skills necessary to effectively manage food allergies in school kitchens and cafeterias.”

Grennan serves on the Food Allergy Management & Education (FAME)national advisory board, where she is honored to share her unique perspective on the management of food allergies in school nutrition.  She is also a contributor for AllergyHome.org and Food Allergy & Anaphylaxis Connection Team (FAACT).  Grennan has presented at numerous local and state conferences.  In July 2014, she teamed up with a pediatric allergist and nurse to offer a comprehensive training workshop about food allergies at the School Nutrition Association’s Annual National Conference.  

As the mother of a child with a severe food allergy I know-all too-well the fear of sending your child to school and praying she comes home safely.  We used to insist Rachel take her lunch to school whenever pineapple was offered on the menu, but often it was paired with her favorite school lunch entrée that she rarely got to enjoy because of it. 

<SIGH> 

As a school nutrition dietitian, how could I deny my daughter who wanted to buy a school lunch?

I knew that school nutrition professionals read and re-read (and read again) literally hundreds of food labels.  I knew they implement cross-contact prevention strategies as they prepare thousands of meals every day.  They wash hands and change gloves between every new task.  They check and recheck lists of students with noted food allergies.  But still, I was anxious about sending my baby to buy lunch at school when pineapple was on the menu.

<DEEP BREATH> 

I spoke to the district level supervisor responsible for managing food allergies to make a plan that included my daughter’s teachers, the school kitchen manager, my daughter and my husband.  The plan evolved as Rachel got older – she now goes through the lunch line and self-carries epinephrine.  Here’s what we did early on and things we still practice today:

·         Provide school nutrition office with required documentation signed by physician.  Schools should not make food substitutions without a doctor’s statement identifying the medical condition (ie. food allergy) and how it restricts the diet, major life activities affected, what foods must be omitted and what foods are allowed.  It is good practice to provide updated forms each year.  Ask if your district requires annual updates.  Restrictive diet changes must be updated in writing and signed by a doctor.

·         Ask the school nutrition director about food allergy management training provided to district culinary team.  School nutrition departments are required to meet professional training standards, including food safety.  Share food allergy resources, as necessary.  Early and frequent communication with school nutrition staff helps support their success and can create peace of mind for both of you.

·         Introduce your child to the school nutrition manager and staff.   Everyone in the kitchen should know what your child looks like, as well as what is his/her food allergy or other diet restricting medical condition.

·         Speak directly with the kitchen manager at your child’s school before the start of school, if possible.  Provide list of safe foods he/she enjoys.  If available and affordable, schools will make every reasonable attempt to provide foods your child likes and can safely eat based on doctor’s orders and plan developed. 

o   When Rachel was in elementary school, on days pineapple was offered, we emailed the kitchen manager her safe menu choices.  If something on the menu was not available, the manger let us know alternatives offered.  School Nutrition staff pre-plated the meal and her teacher retrieved it from the serving line to avoid accidental exposure in the self-service area.  Rachel ate lunch with “safe lunch buddies” every day.  

o   Middle school brought new freedoms and responsibilities for Rachel.  She lets the kitchen manager know if she plans to eat school lunch each day.  If pineapple is offered, staff provides safe side dishes in covered bowls so Rachel can avoid potential cross contact on the self-serve bar. 

o   Next year, high school will present new opportunities for us to partner with school nutrition staff!

The first time we let Rachel buy lunch on a “potentially life threatening day” was one of the longest days of my life.  I was on pins and needles checking my cell phone all day, praying it didn’t vibrate on my desk at work.  I forced myself not to meet her at the bus stop that day, but watched with relief as my then second grader walked home to me that day.    I asked about her day, which included asking her to tell me something fun or exciting that happened.  “I got to eat chicken tenders today,” she said with a huge grin on her face.  “Oh yeah, how was that?”  I asked.  “Delicious!” she exclaimed.  I asked if everything went okay.  “Yep,” was all she replied.  All that worry over nothing.  After two years of packing lunches every day, she finally got to eat school lunch again.  Whew!

-Grennan Sims, RD, LD – District Dietitian, Hickman Mills C-1 Schools, Kansas City, MO



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About Us

Food Allergy Living is a resource for parents of children with food allergies, brought to you by Nutricia, the makers of Neocate. For more in-depth information about our purpose & authors, see our About Food Allergy Living page.