Food Allergy Living Blog Tagged Results

We are happy to announce that we have a new addition to our Nutricia Product Coverage Navigator program! The program assists patients in obtaining insurance coverage for Nutricia products, including Neocate. When we first launched in November 2010, the program was only available in New York and Texas, but now it is offered in Massachusetts!

If you are a resident of Massachusetts, New York or Texas please call 1-800-365-7354 for help with:

• Obtaining prior authorization for any and all Nutricia products, including Neocate Infant, Neocate Junior and EO28 Splash;
• Answering questions regarding claims submissions;
• Drafting letters of medical necessity;
• Providing instructions on how to correct billing errors;
• Interceding with the insurance company on complex reimbursement matters; and
• Appealing a denied claim.

If you don’t live in Massachusetts, New York or Texas, please visit the Neocate website where you will find tips for obtaining coverage and details about reimbursement legislation.

- Sarah

Today's post is a guest blog written by Jodi Berndt. In honor of Feeding Tube Awareness week, Jodi shares her daughter, Allie's story. We'd like to thank Jodi for taking the time to share her family's story with us and raise awareness about feeding tubes.

At this very moment, many parents are facing the reality that their child may need a feeding tube. How do these parents know if a feeding tube is right for their child? Most parents know very little about feeding tubes or what they have to offer.. Feeding Tube Awareness Week (February 6-12, 2011) is to help raise awareness of enteral feeding as a positive and often life-saving medical intervention for those who are unable to eat and drink enough to sustain life, grow and thrive.

This is Allie Berndt’s story. Allie is a 2 ½ year old little girl who weighs 24.6 pounds and is 33 inches long. Her feeding tube saves her life every single day!

Allie was born full term on April 30, 2008 weighing in at 5lbs 8 oz and 16.5 inches long. Shortly after birth, we noticed that Allie wasn’t drinking as much breast milk as a typical newborn, however we never imagined this was the beginning of her long medical mystery.

For 4 months, we tried breast milk and numerous formulas but Allie would not drink more than 2oz at a time. Her Pediatrician started tracking her weight, height and head circumference. Allie continued to fall off the growth chart. When we introduced solid foods at 6 months old, we knew immediately that something was wrong because Allie would never eat more than a quarter of a jar of baby food. We met with numerous local pediatricians and nobody could figure out why Allie wouldn’t eat. Our family pediatrician finally referred us to the Children’s Hospital of Wisconsin (CHW) and we met with our first team of specialists when Allie was a year old.

At this point, no diagnosis and no progress had been made with her oral intake. Allie was shrinking by the day. The CHW feeding clinic evaluated Allie and immediately started running tests to figure out why she refused to eat. It was obvious that Allie had the ability to eat but she just was not interested in food.

We met with the CHW feeding team every other month for 8 months and at each appointment more tests were ran. All the tests were coming back normal so we were encouraged to enroll Allie in a 1 week outpatient intense feeding intervention and to start Allie on an appetite enhancer. We agreed, and in October of 2009 Allie started her feeding intervention and medication. Neither technique worked and Allie continued to avoid food at all costs.

Our little girl was slipping away from us. She was 20 months old and completely mute. She had gone from saying several words to not speaking at all. Her balance was awful due to major muscle deterioration. Allie’s brain had stopped developing properly and she was losing skills she had used weeks before. At this point the doctors had done nothing except mention that down the road Allie may require a feeding tube. We didn’t know anything about feeding tubes and what it could offer for Allie; however when our occupational therapist met us for the first time on December 8, 2009 and looked me straight in the eyes and said, “Allie looks awful. How come she doesn’t have a feeding tube for proper nutrition?” That’s the day I opened my eyes and decided I had to stand up for my little girl because nobody else was going to. We met with the CHW feeding team on December 9, 2009 and I spoke loud and clear stating we were not leaving this hospital until Allie had a feeding tube.

How do you know when the time is right for your child to receive a feeding tube? That is the million dollar question many parents are struggling to answer. Obviously every child is different so every parent has a different answer, however in our situation, I truly believe we and the CHW feeding team failed Allie because she should have had a feeding tube at least 8 months earlier. Allie’s brain didn’t have to start deteriorating; she didn’t have to lose her ability to speak or her ability to walk straight. If Allie would have had her feeding tube earlier in life, she probably wouldn’t have some of the struggles she has today.

In December 2010, Allie was diagnosed with a severe corn allergy (Type IV – delayed reaction) and gluten sensitivity. Due to her severe corn allergy, there are very few enteral feeding formulas out there that are safe for her.

She had a lot of vomiting problems before we found our best friend – Neocate Jr. Neocate Jr. has been all of the doctor’s and dietician’s #1 choice for Allie. We started Allie on Neocate Jr. and a blenderized diet and we saw an improvement within 5 days. She is handling her feeds much better than before and her vomiting has stopped. We are also seeing a big difference in her behavior. Since Neocate Jr. and our blenderized diet do not contain any corn protein or gluten, Allie’s chronic pain has diminished and she is feeling much better every day.

In addition to the Neocate Jr., Allie also consumes Neocate E028 Splash orally. E028 Splash is Allie’s first choice when it comes to an elemental formula. E028 Splash comes in different flavors and Allie enjoys picking out a different flavor every day. Looking back, there are two things I wish we would have been informed about when starting Allie’s medical journey:

1. The feeding tube is not a bad thing! It has saved our child’s life and continues to save her every day. For many children, a feeding tube is temporary and sometimes is only needed for a short period of time. If your child is not consuming enough orally to gain or even maintain weight, I highly recommend you talk to your doctor about a feeding tube. My one regret is not being proactive and requesting a tube for Allie as soon we knew she wasn’t able or willing to consume enough calories to thrive on her own.
2. I wish we would have put Allie on the Neocate formula and a blenderized diet sooner. Allie struggled for a long time with vomiting and tolerance issues. Neocate Jr., E028 Splash and a blenderized diet have worked wonderfully for our little girl and overall she is much happier. Allie is now growing and thriving like every little princess should. Thanks, Neocate for providing such wonderful products!

Allie’s refusal to eat remains a mystery but we are continuing to search for a diagnosis. Here is a video of our journey, which started on April 30, 2008.

During Feeding Tube Awareness Week, please take the time to share your story, or Allie’s, and help spread positive awareness of enteral feeding. Let’s inform everyone of this wonderful life-saving medical intervention that is helping so many children at this very moment. For more information on feeding tubes, please check out: www.feedingtubeawareness.com.

Thank you,

Jodi Berndt

Want to learn more about Feeding Tube Awareness Week? Check out this Feeding Tube Awareness Video!

Links:

Allie's Video

Feeding Tube Awareness Video

We are excited to announce the winners of our Neocate Video Contest. Thank you to those that participated and helped raise awareness about food allergies with their touching videos!

Our first place winner is “Matthew’s Story”. Check out his video to find out how EO28 Splash keeps him movin’ right along.

Our second place winner is “Joshua’s Story”. His video shares his journey with eosinophilic esophagitis and life without food.

Has anyone else made videos to raise awareness about food allergies? We’d love to see them – be sure to post a link in the comments!

- Sarah

Let’s face it, kids are picky. This fact alone makes packing five lunches a week a tough task! And if your little one has food allergies, you’ve got it a little harder. But don’t fret. With a little planning, you can whip up a great bagged lunch in no time.

Relying on the school to provide an allergy-free lunch for your child can often be stressful. Many food allergy parents feel better packing their child’s lunch. It’s an easy way to remain worry-free about what your child is eating at school as well as to ensure that he is getting the proper nutrients.

Here are a few tips on how to pack an allergy-free, nutritionally complete lunch for your school-age kids:
- Plan ahead! It is much easier to make a lunch menu and take a trip to the grocery store when you aren’t on a time crunch.

- Add variety to your little ones lunch so they aren’t tempted to eat off someone else’s plate.

And for more great lunch ideas, check out this blog entry from Allergy Moms. What are you packing for your little one this week?

- Christine

Not so fast. School might be out, but with camp, fairs, carnivals and trips to Disney World…summer is not the time to let your guard down about food allergies.

Of course, it is summer...you and your children should go to the pool, have picnics and play in the sun! You just need to do these activities as food-conscience as you do all the others throughout the year.

Here are a few tips:

• Call ahead if you are attending an event – It can’t hurt! Find out if they are going to have an ingredient list available. If not, pack your child his/her own tasty summer snacks.
• Bring food substitutes – If you are going to be outside all day where safe food won’t be available, make sure to bring food allergy snacks or nutritionally complete drink boxes like E028 Splash.
• And as always, be prepared – make sure that Epipen is always close by.

For all those taking summer trips to Walt Disney World, click here to check out a blog from Allergy Mom. It has some great tips specifically for taking a safe summer trip to the Disney parks.

Any plans for safe summer food fun? I’d love to hear them!

- Sarah

Question: I’ve been hearing a lot lately about eosinophilic esophagitis. Can you explain what it is and how it is treated?

Answer:

Eosinophilic esophagitis, often referred to as EoE, is an inflammatory, gastrointestinal condition typically caused by food allergies. The disease causes swelling of the esophagus due to a build-up of white blood cells known as eosinophils. This inflammation causes painful and severe symptoms including difficulty swallowing, nausea, vomiting, regurgitation, severe heartburn, abdominal or chest pain and weight loss.

Doctors aren’t sure of the exact cause of EoE, but recent research has shown that it may be related to other allergic diseases such as hay fever, asthma and food allergies.

There is currently no cure for EoE, but medical and nutrition therapy can alleviate symptoms and prevent further damage to the esophagus. For the short term, standard medications such as steroids are successful in resolving symptoms and reducing the number of eosinophils. Because of concern with side effects associated with long term steroid use, long term treatment requires nutrition therapy.

Research has shown that an elemental diet with formulas like Neocate and E028 Splash are successful in reducing symptoms and eosinophils in children with EoE. If a total elemental diet cannot be used, then primary nutrition therapy is a food elimination diet where children avoid all confirmed allergic foods, which could include dairy, egg, wheat and tree nuts. Elimination diets are often so restrictive that they may result in poor intake of essential nutrients, like protein, calories, calcium and vitamin D. For this reason, children on elimination diets also benefit from adding an elemental formula, which provides a valuable source of essential nutrients missing in most elimination diets.

From time to time, parents of children with allergies, who use our products, ask me if I’ve ever tried the Neocate formulas. We here at Nutricia have certainly tasted them all, but tasting and consuming are two different things. After lots of questions from parents about what their little one is feeling and whether or not it’s normal, and given my indiscriminate palate, I decided it was time to really give Neocate a try.

My plan? To go on a nothing-but-Neocate diet for two days. What, exactly, would be allowed? Neocate: specifically any of the Neocate products, the flavor packets, and the flavors straws. What wasn’t allowed? Anything else. Well, almost anything else. I decided I would still be allowed tea (lack of caffeine could be a real problem!). I also decided that, given my usually high fiber intake, I would also be allowed to supplement my Neocate diet with fiber. I found an inulin fiber supplement: the same type of fiber that’s included in Neocate Junior with Prebiotics. Some folks might say this is cheating, but I took the advice that I (as a Registered Dietitian) would give anyone: to avoid a sudden and drastic change in fiber intake, up or down. 

With these rules in mind, I used my approximate calorie needs to design a “meal plan” and dove right in.

Day 1 Menu: 

• Morning Snack: Neocate Infant with DHA and ARA
• Breakfast: Neocate Infant with DHA and ARA
• Lunch: Neocate Infant with DHA and ARA + Lemon-Lime Flavor Packet
• Dessert: Neocate Nutra + Neocate Junior Chocolate (“Chocolate Pudding”)
• Afternoon Snack: E028 Splash Orange-Pineapple
• Appetizer: Neocate Junior with Prebiotics + Grapefruit Flavor Packet
• Dinner: E028 Splash Grape + Neocate Junior Chocolate (“Chocolate Covered Raisin”)
• Dessert: Neocate Junior with Prebiotics + Cookies ‘n Cream Flavor Straw

Day 1 Experience:

The day started with Neocate Infant with DHA and ARA. Does this taste like standard infant formula or milk? Nope. Because the Neocate products have amino acids instead of whole protein, Neocate Infant with DHA and ARA has a different taste and a thinner texture. To me it has a grassy undertone, which isn’t so bad, and is something most infants either don’t notice or get used to after a few days. Smaller amounts were fine, but a full 350 calories of plain Neocate Infant was a bit much, even for me: by my last “meal” of Neocate Infant at lunch I decided I could use the help of our Lemon-Lime Flavor Packet. So far, so good. I was surprised that I wasn’t ravenous as the day progressed – I had my doubts that an all-liquid diet would keep me satisfied, but it really did. I managed to go to bed without having any real cravings that day. No stomachaches and nothing out of the ordinary.

Day 2 Menu:

• Morning Snack: E028 Splash Tropical Fruit
• Breakfast: E028 Splash Orange-Pineapple + Neocate Junior + Strawberry & Banana Flavor Straws (“Fruit Salad”)
• Lunch: Neocate Junior Tropical
• Dessert: Neocate Nutra + Neocate Junior with Prebiotics + Cherry Vanilla Flavor Packet (“Chocolate-covered Cherry Pudding”)
• Snack: E028 Splash Tropical Fruit
• Appetizer: Neocate Junior with Prebiotics + Strawberry & Banana Flavor Straws
• Dinner: E028 Splash Orange-Pineapple + Strawberry Flavor Straw + Junior with Prebiotics
• Dessert: Neocate Nutra + Neocate Junior Chocolate + Strawberry Flavor Straw (“Chocolate-covered Strawberry Pudding”)

Day 2 Experience:

This day started with some definite hunger, but the morning snack took care of that. When I arrived at work I found a donut on my desk – so began the cravings for solid food. It was definitely difficult to avoid the snacks around the office that day, but I made it through. The toughest part was probably dinner time. I usually handle food preparation in our house, so having to cook dinner and not partake in enjoying it was difficult.

By the end of the day all of the different flavors began to taste pretty similar to me, probably because I tried to do too many flavor mash-ups. I will say that I definitely found the EO28 Splash an easy option. It seems silly, but it was so much nicer to grab a Splash instead of having to prepare a meal.

All things considered, the Neocate diet wasn’t nearly as difficult as I thought, and actually made life easier. I really appreciated having all of the different flavor options and the simplicity of Splash in a ready-to-go format. That said, a third day might have gotten a little routine, so I have a great deal of respect for the patients who have to stay on an elemental diet for an extended period of time, especially those children who have had “real” food, know what it tastes like, and have to give it up.

And the question many parents would like to ask: How did I feel after two days of Neocate? Pretty normal, actually. My stomach felt a bit more “active” at times, but I never felt queasy, had diarrhea or constipation, or really felt any different than I usually do. I didn’t experience any big swings in hunger or fullness, and it was nice not worrying about whether or not I was getting a balanced meal: Neocate took care of that for me. For parents of children who are going from a more typical diet to Neocate (such as those with EE who are starting an elimination diet) you may want to check with your child’s healthcare team about using Neocate Junior with Prebiotics, which has fiber to help maintain gut health. 

How about you: have you ever tried a full serving of Neocate? If so, what did you think? Feel free to share any questions you have about my experience!

- Rob

If you’ve ever tried to prepare a meal for a picky eater, you know that the process can be a handful. But what do you do when your little one has a very limited diet and they do not find the things they can eat appetizing? That’s just one of the many things we here at Nutricia have in mind, so we try to offer as many options to our customers as possible. Our goal is to make meal time as stress-free as possible for a diet that is difficult, but necessary. One of the easiest solutions we offer is our Flavor Packets.

What makes our Flavor Packets so great? They come in 3 flavors (cherry-vanilla, grapefruit and lemon-lime) that are different from the Neocate Junior and Splash flavors. Each packet adds only about 15 calories and contains no protein, making them perfect for an elemental diet. This gives more variety to a formula-based diet for children over one year.

The best feature of the Flavor Packets is that you can use as little or as much as needed to match your child’s flavor preference. For instance, some children who start using Neocate Infant at a young age and then transition to unflavored Neocate Junior make the switch with no problem. However, as they get older and experience new tastes (like fruit juice) they may not like the taste of an unflavored elemental formula as much. But it’s also possible to find one of our flavored formulas a bit overpowering. In this case, you can add just enough flavor to help mask the taste of the amino acids, but not so much that the flavor or sweetness is overwhelming.

Not sure how much of a flavor packet to use? Each flavor packet is designed to mix with about sixteen ounces (or two cups) of prepared formula. For a child who is accustomed to unflavored formula, a good suggestion might be to start out at half-strength and see what they think. If your child is old enough, you could set up a blind taste test “experiment” for them with a few different concentrations and flavors to see what they like best and make the experience more fun! Also, for children over a year old you can use Flavor Packets with Neocate Nutra. We suggest experimenting to see how much flavor is right and a good place to start might be ⅛ or ¼ teaspoon per serving of Nutra.

Have you found the Flavor Packets to be helpful with keeping your little one interested in their elemental formula? Let us know in the comments section below.

- Rob

We’ve written a few blogs in the past relating to fiber and prebiotics. One of them discussed what fiber is, and why it’s good for us and another touched on prebiotic fiber. In a previous blog that I wrote, I mentioned that I decided to supplement my all-Neocate diet with fiber. If you feel your child might benefit from a fiber supplement, we have some tips to help you choose the right one!


Know what your child needs

Before exploring the options, make sure to check with your child’s health care team to be sure that additional fiber is needed. As we’ve mentioned in previous blog posts, fiber can help to improve gut health. For many folks, adding fiber can mean being more “regular,” which would be a decrease in constipation, diarrhea, or both. Your child’s health care team will consider the symptoms your child has, his or her medical condition, the amount of fiber he or she is getting, and whether or not more fiber might be helpful. Nutricia already has the only amino acid-based formula with fiber (Neocate Junior with Prebiotics), which can help meet your little one’s fiber needs.


Know what’s available

Fiber comes in MANY different forms, and is found in a variety of foods. The best sources of dietary fiber are fruits, vegetables, beans (or “legumes”), nuts, and whole grains. However, many children on an elemental diet are limited in one or more of these food groups. They may be especially limited in processed foods, or foods that might include fiber but also have an allergen (such as whole grain bread, which can often have dairy or egg ingredients). Again, be sure to check with the health care team to see if the foods your child is eating meet his or her fiber needs.

While there is a lot of variety in the types of fiber in whole foods, the types of supplemental fiber tend to be an isolated single type of fiber. For instance, many fiber supplements are bran-based. They use the outer husk of a grain to provide both soluble and insoluble fiber. Since insoluble fiber tends to speed digestion along, it may not be the best choice.

Another common form of fiber supplement is an isolated fiber, either soluble or insoluble fiber. Soluble fiber dissolves easily, so it mixes well into Neocate Junior, E028 Splash, or Neocate Nutra. It can help slow movement through the gut, and can help add bulk to stool. This is the type of fiber we include in Neocate Junior with Prebiotics. Many of these isolated fiber supplements are inulin, which is derived from the root of the chicory plant, which poses low risk for most children with allergies.

Know what questions to ask

One of the best questions to ask is what the source of the fiber is. For children with a wheat allergy, a fiber source which is derived from wheat, barley, rye, and possibly oat might not be appropriate. For those, a parent should look for a “gluten-free” claim or contact the company for more information.

Some fiber supplements carry the label “non-allergenic” or “hypoallergenic.” It’s always best to contact the company and ask them exactly what they mean with these terms. Also be sure to ask what the source of the fiber is and whether or not the product poses any risks for your little one’s specific allergies or sensitivities.

If your child’s health care team recommends supplementing fiber, make sure to ask how much to add and how to start using it. It’s best to introduce more fiber to the diet slowly and increase it gradually instead of adding the full dose all at once. This gives the body time to adjust to the change. Fiber should also be spread out throughout the day.

Do you have questions about choosing the right fiber supplement?  Let us know in the “Comments” section below.

- Rob

[Image Source – D Sharon Pruitt]

If you’re used to preparing your little one’s powdered Neocate formula, you might be wondering if there is an easier way. It’s tough enough getting kids dressed in the morning, much less having to measure out and prepare powdered formula to send to daycare or school. Fortunately another option is E028 Splash!


What is E028 Splash?

E028 Splash, or just “Splash” for short, is part of the Neocate line of hypoallergenic formulas. The “E028” doesn’t mean anything special: it’s just a unique product code that stuck! Splash is technically a “medical food,” which falls somewhere in the middle of a food, a drug, and a supplement. Orange-Pineapple Splash has been available in the US since 1995, and in 2006 we introduced 2 new flavors: Tropical Fruit and Grape.

Splash, just like Neocate Junior, is designed for kids over a year old and contains some of all of the nutrients growing bodies need, like carbohydrates, fats, proteins, vitamins, and minerals. Splash is unique because the protein source is free amino acids, which are safe for kids with food allergies and other medical needs that require an elemental diet. It’s also gluten-free and casein-free.


What makes Splash so great?

The number one reason parents love Splash is because it’s so convenient. Splash is the only ready-to-feed amino acid based formula there is! It goes into a backpack just as easily as any other juice box. No more measuring powder, measuring water, and shaking! Not only is this convenient for daycare or school, but it also takes the guesswork out of the equation for babysitters, family, and other parents when your child visits on a play date.

Kids love Splash for a number of reasons. Severe allergies may mean they need a special formula, but who says it has to LOOK like a special formula? Not us! Splash is packaged to look like other juice drinks, so allergic kids don’t have to feel “different” from everyone else. We even use colored straws to mask the look of a formula, because Splash has NO artificial colors. For some kids, the novelty of getting to drink their formula through a straw instead of from a cup can make a world of difference. And don’t tell your little one that we said this, but the drink box keeps the distinct smell of formula wrapped up. And to top it all off, Splash comes in 3 great flavors, which can help kids to stick to an elemental diet by adding variety.

Splash has been a blessing for so many families that it has even appeared in a few news stories: here’s a video of Splash helping Matthew Bernard!

- Rob

Over the past few years, a lot of attention has been paid to bisphenol A, or BPA – which was commonly used in food packaging.    As we’ve mentioned in previous blog posts, BPA is still out there due to a lack of suitable replacements, though is a lot less common as a result of public concern.  Many manufacturers have been able to remove BPA from their food packaging materials as well as from plastic dishes and containers.  You may have recently seen items like baby bottles and water bottles labeled as being BPA-free.

Even though some of the chatter on this topic has died down, we here at Nutricia still often get questions about whether Neocate packaging contains BPA.  It’s normal for parents of children who use Neocate products to be more aware of things that other parents might not think to look for.  So, we wanted to briefly remind you and any new Neocate parents that the package linings for Neocate products do not contain BPA.

Our first blog on BPA in 2009 discussed the fact that all of the powdered Neocate products are packaged in cans that have a BPA-free lining.  But we still got questions from parents about E028 Splash, the ready-to-feed liquid elemental formula in the Neocate family.  In early 2010 we confirmed in a second blog that Splash is packaged in cartons that have a BPA-free liner.  More great news!

If your little one uses any of the Neocate products, you can rest assured that there is no BPA in the package linings.

- Rob