Food Allergy Living Blog

Nutrition Specialist Column

How to Travel with Neocate

Posted 2.27.15 | Rob McCandlish, RDN

by Kathleen Smith, RDN, LDN

As the weather starts to warm up and you start to consider travelling, you have lots to consider: where to go, how to get there, and what to pack. Whether you travel by car, bus, train or plane, an advance plan for the transportation and amount of Neocate you or your family member will need for your trip will save you from additional trip stress.

First things first, calculate exactly how much formula you will need for the entire trip. You don’t want to underestimate and run out of formula, as the chances of a local pharmacy having Neocate are small! (Check here if you find yourself in that situation.) We recommend packing an extra can just in case your travel plans change unexpectedly.

Next you will want to plan the amount of prepared formula to bring with you. Neocate powdered formulas can be prepared ahead of time and kept in a refrigerator for up to 24 hours. Neocate can be kept at room temperature for up to 4 hours as long as the bottle or container has not been “touched” (i.e. no formula has been consumed). So if you have a long flight or car trip, consider bringing a little cooler for your bottles; the cooler should be maintained at a temperature of less than 40°F. Also, pack some extra Neocate powder in your formula bag in case of lost luggage or spillage of formula.

If you are flying, the Transportation Security Administration (TSA) has regulations about flying with liquids for you or your family member. Formula, breast milk and juice for infants or toddlers are permitted to be brought on board the aircraft. Older individuals (older child, teen or adult) may also travel with Neocate. Travelers must tell the TSA officer at the beginning of the screening process that they wish to bring formula, breast milk and juice in excess of 3.4 ounces in their carry-on bag. These liquids do not have to fit within a quart-sized bag like other liquids. The formula, breast milk and juice are typically screened by X-ray, and any of these liquids in excess of 3.4 ounces will receive additional screening.

Travelers are encouraged to travel with only the amount of formula, breast milk and juice needed to reach their destination. Ice packs and other accessories required to cool formula, breast milk and juice are also permitted through the screening checkpoint but may be subject to additional screening. We’ve learned from Neocate families that some TSA officers may not have encountered an older individual requiring a medical food like Neocate before. If you or your loved one is older, it may also help to bring a doctor’s note explaining that Neocate is medically necessary. TSA recommends that if you plan to travel with large quantities of medically necessary liquids you should coordinate your screening by contacting a Passenger Support Specialist prior to your flight.

For more detailed information from TSA about flying with formula, visit http://www.tsa.gov/tsa-kids/parents-page prior to your flight.

For more information about the screening of passengers with disabilities and medical conditions, go to www.tsa.gov/traveler-information/travelers-disabilities-and-medical-conditions. Here, passengers will find information about the TSA Cares program, how to secure the services of a Passenger Support Specialist (who is trained in assisting passengers with disabilities and medical conditions through the checkpoint screening process), and what to expect during the security screening process. In addition, passengers may ask to speak to a Passenger Support Specialist or a Supervisory TSO while at the checkpoint if they need assistance. Passengers also may report concerns by emailing TSA’s Disability and Multicultural Division at TSA.ODPO@tsa.dhs.gov.

We hope you and your family have a safe and wonderful trip!

-Kathy

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Neocate Shipping and Storage

Posted 2.24.15 | Rob McCandlish, RDN


It’s a cold, blustery evening on your drive home from a long day at the office. As you approach your front door you notice the Nutricia North America box sitting at your doorstep. Your initial thought is, “Oh no, can we use this after it’s been sitting here in these cold temperatures all day?”

During these cold winter months (as well as those hot summer days that will soon be upon us) it is not uncommon to wonder if our products are safe after the temperatures they have been exposed to during shipping and delivery.

Short-term exposure to temperature extremes that our products experience during shipping (e.g. being left on a porch in cold or hot weather) typically does not pose a risk to product quality or stability. Those extreme temperatures would become a concern if the product is left at those temperatures for an extended period of time, for example several days or weeks.

The temperatures that are printed on our product labels are recommended storage temperatures, which cover long-term storage of the product. They are based on the effects that extreme temperatures can have on the products over extended periods of time, typically much longer than those experienced during shipping. (With this said, Nutricia’s products are not required to be shipped in a temperature-controlled environment.)

Of note, freezing Nutricia's liquid products may affect the product's consistency, as the thawing process can affect the ability of emulsifiers to maintain a stable solution. In addition, freezing of our liquid products could also have an impact on the water-soluble vitamins (specifically Vitamin C and the B vitamins) which is certainly important to take into consideration for those individuals who rely on our products as their sole source of nutrition.

If you are ever unsure as to whether or not the Nutricia product you have received is safe to use, please do not hesitate to call a member of our Nutrition Services team to discuss your concerns.

-Kendra Valle, RDN, LDN

 

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It only takes a cupcake…

Posted 2.13.15 | Nutrition Specialist


…to cause a cascade of unfortunate events for a child with a food allergy. Besides having to say “NO” to the tasty treat due to potential allergy-triggering ingredients, the student may encounter taunting and teasing from classmates for having an allergy- insult icing!

Both the number of children with food allergies and bullying incidents of these kids are on the rise. According to a 2013 study by the Centers for Disease Control and Prevention, food allergies have increased in children approximately 50% between 1997 and 2011, estimated at nearly six million children, or 8% of kids in the U.S and roughly two in every classroom. Unfortunately about one-third of these kids are bullied because of their allergies. This can run the gamut from being barred from activities involving food by teachers to name calling by peers or even threats to the allergic child using the potential food allergen. Faced with this, the allergy-challenged child experiences increased stress and anxiety. This may lead to their not eating during school, avoiding school or even succumbing to peer pressure and forgoing the off-limits food, in spite of possible harmful side effects. Bullying can be both emotionally and physically damaging.

Parents, teachers, and the community can be instrumental in curbing food allergy bullying. Scripting responses, role playing scenarios and running interference with school personnel are ways parents can help. Kelly Huth writes about these and offers suggestions and supporting information for parents on this website.

Guidelines for schools and training materials are available through the Food Allergy & Anaphylaxis Network (FAAN) on their website. The School Nutrition Association has training available to members on their School Nutrition University website. Online training for non-healthcare school personnel developed by FAAN and the Food Allergy Initiative can be found on their website.

 The Food Allergy Research & Education (FARE) has an online public campaign - “It’s Not a Joke” - that has sparked a lot of media attention to food allergy bullying. Their PSA, along with other materials, are available on the campaign website www.foodallergy.org/its-not-a-joke.

Webinars
What Every Parent Must Know about Managing Food Allergies at School: Must-know facts for establishing a safe and inclusive school environment.

CDC Guidelines: The Gold Standard for Food Allergy Management in Schools: Highlights from the CDC Guidelines: Developing a Food Allergy Management and Prevention Plan (FAMPP); Following Federal Laws; Recommendations for Safety and Inclusion; Actions for District and School Administrators and Staff

For additional information and resources consider: http://www.cdc.gov/healthyyouth/foodallergies

Sharing information and resources on the serious nature of food allergies and increasing awareness of the dangers of food allergy bullying is a way to be a change agent for kids with allergies. Spark some attention to this- spread the word. Be the icing on an allergy-free cupcake!

-Jody Benitz

References

1.        Allergy statistics. American Academy of Allergy, Asthma, and Immunology website.
2.       Food allergies: what you need to know. US Food and Drug Administration website.
3.       Lieberman JA, Weiss C, Furlong TJ, Sicherer M, Sicherer SH. Bullying among pediatric patients with food allergy. Ann Allergy Asthma Immunol. 2010;105(4):282-286.

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Tube Feeding: Troubleshooting Tips

Posted 2.3.15 | Mallory West

Many Neocate babies and children receive their formula through a feeding tube. Common Neocate formulas that are received through feeding tubes include Neocate Infant DHA/ARA, Neocate Junior, Unflavored, and Neocate Splash, Unflavored. Enteral tube feeding provides nourishment to individuals who are unable to consume adequate nutrition by mouth. If your child uses a feeding tube, you know that there may be some occasional tube feeding complications. This blog will provide some general troubleshooting tips for the most common tube-feeding problems.

Clogging of the Feeding Tube:

Sometimes a feeding tube will become blocked so that no food can go through.

How to Fix Clogs:

  • First, using a syringe to gently remove the liquid on top of the blockage, if possible (throw away the fluid removed).
  • Next, gently flush the tube using lukewarm water, using at least a 30 mL (1 oz) syringe. Gently plunge the water back and forth to clear the blockage.
  • Unless directed by a healthcare professional, do not use acidic solutions such as fruit juices or cola as they may curdle the formula.
  • If the tube is still clogged, clamp the tube for around 10 minutes and then try flushing it again.
  • If the tube the clog remains, gently squeeze the tube between your fingers along the length of the tube as far as possible.
  • If you are still unable to clear the blockage, contact your healthcare professional for advice. Sometimes, the physician will prescribe a special enzyme which can dissolve the clog. If the clog cannot be cleared, the tube will have to be replaced.

How to Avoid Clogs:

  • Tube flushing is the most important factor for preventing the feeding tube from clogging. Use a syringe to flush 20 mL of warm water through the feeding tube before and after feedings and medications (or as directed by your healthcare team). If your child receives a continuous feed, your healthcare provider may recommend flushing with water during the feed to prevent clogging.
  • Use liquid medications whenever possible. If pills are necessary, crush them well and mix them with a small amount of warm water. Use a syringe to draw up the solution and insert it into the feeding tube. If pills are coated or time-released, discuss this with the physician because these types of pills are typically not meant to be crushed.
  • Do not mix medications together and do not mix medications in formula unless instructed to do so by your healthcare provider.

Tube Site Irritation or Infection:

Redness, pain, swelling or unusual/excessive drainage, as well as fever, can all be signs of an infection at the stoma site (the surgical opening through which a gastrostomy tube (g-tube) or jejunostomy tube (j-tube) enters the stomach or small intestine).

How to Avoid Irritation or Infection:

To avoid infection, it’s important to keep the stoma site clean and dry. Your healthcare provider should give you specific recommendations for how to clean the stoma site each day. For more information on keeping the stoma site clean (from a parent’s point of view), check out this informative article from Complex Child E-Magazine.

A Dislodged Feeding Tube:

If the feeding tube comes out, call the doctor and go to the hospital right away. The stoma can close up very quickly so the tube needs to be replaced promptly. Cover the site with clean dressing or bandage to prevent leakage and immediately seek medical attention.

Sometimes the healthcare provider will train you to replace the feeding tube yourself (temporarily or permanently) but you should ONLY do this if directed and properly trained by your child’s physician.

How to Avoid:

Young children occasionally pull the tube out themselves. Keep the tube covered with clothing to prevent this. Onesies work well for infants and toddlers. It’s also important to secure the tube during activities so that it doesn’t get pulled out. You can use various methods to secure the tube. Some companies make special wraps and clothing for protecting and accessing the feeding tube:

Do you have any troubleshooting tips to share with other tube-feeding families? What problems have you encountered and what tricks have you learned?

- Mallory


Enteral Tube-Feeding: Understanding the Basics

Posted 1.29.15 | Mallory West

Although most Neocate users drink their formula, many patients receive Neocate through a feeding tube. This is referred to as “enteral nutrition”. Those of you with tube-fed family members are already experts on the subject, however, I hope this post will be useful for those of you who are new to tube feeding or for those of you who are just interested in learning how it works.

Tube feeding provides nutrition to someone with a medical condition that impairs his/her ability to eat or drink (or impairs their ability to consume enough to sustain his/her nutritional needs). Nutrition is provided by a special liquid food that is given through the feeding tube.

The liquid food contains all components of nutrition (protein, fat, carbs, vitamins and minerals) so it provides everything a person needs to live and be healthy. Some people are exclusively tube-fed while others continue to eat food while supplementing with tube-feeds. Fluids and medications (most of them) can also be given through the tube (which is a nice perk for kids who require some bad-tasting meds!).

Types of Feeding Tubes

There are various types of feeding tubes. A nasogastric or nasoenteral tube is inserted through the nose into the stomach or small intestine[1]. Alternatively, a tube may be surgically inserted through the skin and directly into the stomach or the small intestine in a procedure called a gastrostomy or jejunostomy, respectively. You may hear these refered to as a “g-tube” (short for gastrostomy tube) or a “j-tube” (short for jejunostomy tube). Patients with g-tubes may get a feeding port (commonly known as a MIC-KEY button or a mickey tube), so that the outside feeding tube only needs to be attached during feedings.

Methods of Tube-feeding

There are 3 ways that tube-feeds are administered:

  • Gravity: With gravity feeds, a bag of formula hangs above the patient so that the formula flows down the tube.
  • Syringe: With syringe feeds, formula is administered by hand using a syringe to push the formula through the tube.
  • Feeding pump: An electronic pump moves formula through the feeding tube at a controlled rate. Common brands of feeding pumps include the Kangaroo pump and the Infinity pump.

Feeding Rates

  • Bolus feedings: Bolus feedings are relatively large in volume and given over a relatively short period of time. Feedings are given several times a day and the schedule more closely resembles “mealtimes” in comparison to a continuous feed.
  • Continuous/drip feedings: Feedings that are given at a slow rate, over a relatively long period of time. Continuous feeds may be indicated for patients who are unable to tolerate large volumes.
  • Combination: Some people may do a combination of both types. For example, they may receive bolus feeds during the day and a continuous feed overnight.

Enteral nutrition is such an amazing example of the impact that medical technology has on our lives. Before there was enteral nutrition, the inability to eat was a life-threatening situation. Although nobody wants to rely on a feeding tube unnecessarily, it is such a blessing for those who could not live without it.

My younger sister Caroline got her G-tube about 6 years ago (she was 11). We tried to avoid it for so many years but once she got it, it turned out to be such a blessing in disguise! She has never looked healthier; she gained some much-needed weight, her hair and skin look so much healthier, and she’s so much stronger. Our family is so thankful for it! If you have come across this post because your little one is getting a feeding tube, I hope this gives you a new and optimistic perspective!

Do any of you have experience with a feeding tube? What impact did it have on your child’s life? What are the biggest obstacles you experience with a feeding tube?

-Mallory


[1] American Society for Parenteral and Enteral Nutrition (A.S.P.E.N.). http://www.nutritioncare.org/About_Clinical_Nutrition/What_is_Enteral_Nutrition/

 




Living Dairy-Free in a Crazy-for-Dairy World

Posted 12.16.14 | Nutrition Specialist

Rachel is a mother of two, and is married to her husband, Brent. Her son has life-threatening allergies to dairy, egg, peanut, carrot, celery, and pumpkin.  She blogs at Mom Vs. Food Allergy, home schools her children, and is a No Nuts Moms Group Support Group Leader.  It is her passion to encourage other mothers and caregivers in their food allergy journey.  Follow her on Facebook, Twitter, and Pinterest.  

It seems that the world is crazy for dairy, dairy, and more dairy!  I’ll be the first to admit that I love a delicious slice of cheese. Once my son was diagnosed with a severe, life-threatening dairy allergy at nine months old, sitting down to make that first grocery list post-diagnosis was quite difficult. Four-and-a-half years later, we’re getting used to living and cooking without our beloved dairyladen recipes.

Where is dairy hiding?

Dairy hides in all sorts of products, and not just food products. I polled readers of my blog, Mom Vs. Food Allergy, for places they had found dairy and here’s what they came up with:

•    Allergy medications

•    Asthma inhalers

•    Soap

•    Clothes (yes, this is for real)

•    Hot dogs

•    Bouillon cubes

•    Antibiotics

•    Instant rice

•    Fresh, whole turkey

•    Baby lotion

•    Fresh chopped basil (in squeezable tube)

•    Taco seasoning

•    Salt & vinegar chips

•    Dramamine

•    Wine

•    Deli meat

•    Chicken broth

•    Theater paint

This list is really just the beginning, and is dependent on brands, certain flavors, and where things are processed.It does reveal, though, just how many products that need to be on your radar as someone dealing with a dairy allergy. It’s a perfect reminder to read every label, every time.

How do you avoid dairy?

•    Read every label, every time

•    Use safe substitutions for milk

•    Be on the lookout for words such as “creamy”

•    Know alternative words for dairy such as whey, ghee, and casein. See a more complete list here

•    Don’t eat food that doesn’t have a label

•    Be conscious of cross-contamination

 

What are safe dairy substitutions?

Thankfully, there are many dairy alternatives these days. I’ll never forget when I discovered vegan “cheese”that allowed me to make favorites like Macaroni-n-“Cheese” and Goldfish crackers for my then preschool son. I really thought I’d died and gone to dairy-free heaven. Here are my favorite brands for living a dairy-free life to the fullest:

•    Daiya Foods (frozen pizza, cream cheese style spreads, and shredded, sliced and block “cheese”)

•    So Delicious Dairy Free (ice cream, yogurt, and milks that are coconut based.  They produce some nut products as well, but have a great allergen statement on their website)

•    Silk (milk and yogurt from a variety of dairy free sources.  Read labels if you have other allergies)

•    Tofutti (dairy-free soy based products)

**If you have more than dairy allergies, please read labels carefully and call companies if you are uncertain about cross-contamination

What are some resources for dairy-free living?

•    Kids With Food Allergies

•    Go Dairy Free (book and website)

•    Vegan Cooking & Baking Books

•    The Neocate Food Allergy Cookbook

Living with a dairy allergy can be challenging. If you are diligent, you still can live a healthy life that is full of tasty treats and meals.  My most important tip of all, is to ALWAYS carry your epinephrine (call 911 after administering), asthma medication, and antihistamine. Also, read every label, every time to stay safe while managing your dairy allergy. Lastly, focus on the foods you CAN have to have a positive outlook on living a dairy-free life in a crazy-for-dairy world.


How Children Can Explain Food Allergies

Posted 11.19.14 | Rob McCandlish, RDN

Many parents of children with food allergies figure out over time how to explain the allergies to others. But what happens when your child is on her/his own? How do you prepare your child to explain food allergies to other children?

1 – Role Play

It may seem simple, but one of the best methods to prepare your child to answer questions is to practice. You can take a turn being the child with food allergies to give your little one a chance to see an example. We got this idea from Linda Cross in her post on the Kids with Food Allergies site: Raising a Well-adjusted Child Who Happens to Have Food Allergies. It’s full of a lot of other great, practical tips!

2 – Read about it

Children love reading from a young age. Why not read a book together about a young boy’s food allergy? Peter Can’t Eat Peanuts was a book Nadine Reilly wrote to help others work through the same experience her family had. We learned about this great book through a blog that Wendy Mondello wrote, that’s full of a lot of other great tips about managing food allergies as a family, especially emotions.

3 – Share a Video

Videos can be great teaching tools, especially for young children. Your child could share this video, narrated by a pair of pediatric allergists, with his/her classroom during ‘Show and Tell’ or could share it with a friend when asked about why certain foods are ‘off-limits.’

What have you found helpful in empowering your child to explain food allergies to other children?   

-Rob

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Four Tips for Celebrating the Holidays with Food Allergies

Posted 11.17.14 | Nutrition Specialist

With the holidays around the corner it is important for families with food allergies to plan ahead.

Below are tips that will help you to have a healthy, happy and allergy-free holiday season:

1. Communication is key:Communication is so vital when dealing with food allergies. It never hurts to remind kids of how to explain their food allergies and be mindful of what they eat. If you’re going to a party with your kids, be sure to educate the host of the food-restrictions for your kids. Discuss the concerns of food allergens, possibility of cross-contact and allergen substitutions.

2.  Festive giveback:If a guest brings food that contains allergens and is well-sealed, consider donating the food to the many organizations that work towards alleviating hunger across cities. If you’re a guest to a party which is hosted by a family with food allergies, you can contribute to the party by not just bringing in food, but also flowers, carnations, cups, dishes and so on…

3. Labels and color-coding:Labels are very helpful that enable vital information regarding different ingredients in the food item. If you’re a host, be sure to label every ingredient in the food item for food-allergic guests. If you’re invited to a gathering, plan ahead and suggest the idea to the host of having food labels. Color-coded utensils can be a great way to alert food items with allergens for individuals with food allergies. For example: A bright red spatula can signify the food containing food allergens.

4. You’ve got this:With every new experience, you will find your own unique way to celebrate holidays with food allergies. We know that you have learnt a lot with numerous family gatherings, parties and birthdays and that’s why we know you’ve got this!

This is a wonderful time of the year and enjoy the holiday season allergy-free with your closest!


Allergy Labels

Posted 11.4.14 | Rob McCandlish, RDN


Every now and then we hear about or stumble on a new product that we feel is worth sharing with our readers. This week we wanted to let you know about various labels for food allergies that are made by a company called 

Name Bubbles. You can view the various food allergy alert labels they make here

We like these labels because they're easy to understand and hard to miss. The larger labels include room for your contact information, and all are waterproof, which a lot of homemade labels are not. That makes them ideal for food storage containers that you send to school, to daycare or on play dates. Not only are typical adhesive labels available, but they also offer wristbands, which are a great idea for small children. While the labels Name Bubbles sells cost more than homemade labels, Name Bubbles has committed 20% of proceeds related to allergy label purchases to FARE this year - pretty impressive!

Aside from stickers and labels, how do you communicate food allergies to friends and/or strangers?

-Rob

 


This Halloween Go Teal

Posted 10.30.14 | Nutrition Specialist

Halloween can be a challenging holiday for families with food allergies. Allowing Little Ones to enjoy the experience without fear of an allergic reaction often keeps families from participating. As a solution, FARE (Food Allergy Research Education) is encouraging families to start a new tradition, the Teal Pumpkin Project, that will make Halloween less scary for children with food allergies.

This campaign encourages people to raise awareness of food allergies by providing non-food treats for trick-or-treaters and painting a pumpkin teal - the color of food allergy awareness - to place in front of their house along with a free printable sign from FARE to indicate they have non-food treats available. 

The Teal Pumpkin Project is designed to promote safety, inclusion and respect of individuals managing food allergies – and to keep Halloween a fun, positive experience for all. 

To learn more about the campaign, visit www.fare.org.

You can download a teal colored pumpkin here.

Have a happy and safe food allergy-free Halloween!

 



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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.