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Celebrating Neocate Mothers!

Posted 5.5.16 | Nutrition Specialist

Each year, for one special day we have the privilege of honoring all of the mothers who devote themselves to ensuring the safety of their children. With Mother’s Day approaching this weekend, we want to thank each and every one of our Neocate moms for their endless love and support of not only their children, but each other.

We frequently receive thoughtful messages from the community about how Neocate has helped moms and their LOs thrive. The beauty of the Neocate community is the willingness of our parents to share their journeys and help each other overcome food allergy obstacles. Thank youfor your continued love, support and dedication.

In celebration of Neocate mothers everywhere, we’ve highlighted a few of the heartfelt testimonies we’ve received. 

 

 


National FPIES Day 2016

Posted 5.3.16 | Nutrition Specialist


The one day of the year a pie to the face is a GOOD thing! 

Got your attention? Good! Because May 4th is National FPIES Day! We wanted to share a few facts about FPIES and tell you about National FPIES Day, ways that you can get involved, and some organizations that help to raise awareness and support for FPIES.

FPIES

FPIES stands for Food Protein-Induced Enterocolitis Syndrome. This is a rare form of food allergy that is gaining awareness. FPIES affects infants and young children primarily, can take a long time to be recognized and diagnosed, and can mean very significant dietary restrictions. Want more details?

National FPIES Day

What better way to raise awareness for a condition than with a dedicated day? We can’t think of one! In 2015, the United States Senate designated May 4th as National FPIES Awareness Day! This resulted from efforts from the International FPIES Association (I-FPIES, more on them below) and over 1,000 supporters.

Raising awareness of FPIES can help highlight the disorder on behalf of affected children and adults. Together, we can make diagnosis and treatment – and life in general - easier for FPIES children and families.

Every day is a good day to raise awareness about FPIES, but National FPIES Awareness Day is probably the best day. Here are some ways that you can help to raise awareness and spread the word:

  • Change your Facebook or Twitter profile picture to the official event logo, available from I-FPIES, the FPIES awareness ribbon:

 

  • Share your personal FPIES story, photos, and words of encouragement on social media
  • Use the hashtags #NationalFPIESDay and #FPIESontheRise
  • Donate in honor of someone you know with FPIES to an organization dedicated to creating a better tomorrow for those living with FPIES (more below)

Pies in the face for FPIES 

We saved our favorite awareness-raising idea for last: Pies in the face challenge for FPIES! This genius idea came from I-FPIES, and we personally can’t wait to pie our coworkers (to help raise awareness, of course!). Read more here, but here’s the low-down:

  1. Post a video of yourself being "pied" on the I-FPIES Facebook page or using the hashtag #pieface4fpies
  2. In your video, make sure to:
  • State why you are doing this: to raise money and awareness for FPIES and for National FPIES Awareness Day on May 4th.
  • Name who you are honoring with this challenge.
  • Refer to fpies.org to learn more about FPIES.
  1. Make a donation to help fund initiatives that make a difference in the lives of FPIES patients and families.
  2. Get family, friends and others involved! Nominate 4 more people to complete the challenge in 48 hours!

I-FPIES – The International FPIES Association

I-FPIES, founded by a mom who had a very personal experience with FPIES, is a nonprofit organization that provides education, support, and advocacy for individuals with FPIES and their families. I-FPIES partners with leaders in the medical community to develop evidence-based research, with a focus on early detection and new treatment options. Ultimately, I-FPIES represents families and medical professionals united by a common focus: finding a cause and a cure for FPIES. Learn more about I-FPIES here, including how you can help to support this great organization.

The FPIES Foundation

The FPIES Foundation is a collaborative effort of several families affected by FPIES who want to help other families find their way. The FPIES Foundation is committed to providing support resource to families to make their everyday lives easier. Learn more about The FPIES foundation and view their resources here.

Gee, we should have an FPIES conference!

Wouldn’t it be great if a national conference for FPIES took place the same week as National FPIES Awareness Day? We’ve got news for you: there is one, and it does! If you have a loved one with FPIES, there's still time…

The 2016 FPIES Education Conference takes place later this week, on May 7, in the great city of Chicago. Presented by I-FPIES, the conference brings together parents and caregivers to share experiences and learn the latest about FPIES from leading researchers and healthcare professionals. Read more about this great event here.

How will you help promote and raise awareness of FPIES this year?

-Rob McCandlish, RDN


Neocate Mixing & Storage Questions Answered – Round 2

Posted 4.28.16 | Nutrition Specialist


When it comes to mixing and storing formula, we’ve heard every question, usually more than once! A few months ago, we answered questions about mixing and storing Neocate products. This post was so popular that it helped spark additional questions from our Facebook followers as well as comments posted on our blog.

So here we go, Round 2!

Once Neocate formulas are prepared, how long until they go bad? Can I keep them longer in the fridge?

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The important thing to remember is that our recommendations help to make sure that Neocate stays fresh and that it doesn’t have time to “go bad.” (Good Neocate is a nice guy; Bad Neocate is just plain mean!) “Going bad” is a nice way of saying that a food or formula sat around too long, and bacteria showed up and multiplied! This can make food or formula taste bad, smell bad, and possibly make you sick. Here’s a breakdown of the times we recommend:

24 hours – This is the amount of time that prepared Neocate powdered formulas can stay in the fridge, IF you put them in right after mixing. This also applies to Neocate Splash that’s been opened, but not if anyone has taken a drink directly from the container! If Neocate has been in the fridge longer than 24 hours, we recommend throwing it out.

4 hours – This is the amount of time that prepared Neocate powdered formulas (or opened or poured Neocate Splash) can sit out at room temperature. This can be either after being freshly mixed, or after being removed from the fridge. If it’s been on the counter at room temperature longer than 4 hours, throw it out!

1 hour – This is the amount of time that Neocate can be kept after someone starts to drink it. Like it or not, our mouths are full of bacteria that just love nutrient-rich formulas like Neocate. Once your baby, child, or you take a drink, start the clock and throw out what’s left after 1 hour. Safety first!

Can I make Neocate in advance and use it at a later time?

C:\Users\mccandro\Pictures\purple fridge.jpgSure! As long as you follow the rules above for storage times, you can prepare Neocate formulas in advance. We always recommend that freshly prepared formula is best, but we know it’s not always easy to mix it exactly when you need it. For further guidance, check with your healthcare team!

Note: We don’t recommend preparing Neocate Nutra - our hypoallergenic semi-solid - in advance, because the texture will actually become thicker over time AND thicker with refrigeration. However, the storage instructions for Neocate Nutra would be the same as for the Neocate formulas if your healthcare team is okay with the thicker texture.

 

Once I’ve mixed Neocate to store for later, do I put it straight into the fridge or do I need to cool it down first?

It’s best to cool the prepared Neocate quickly to get it below the “danger zone” at which bacteria grow best. Straight into the fridge for a bottle is fine, regardless of the water temperature used. That’s because small items will cool quickly in a fridge. However, if you mix a large volume of Neocate, such as for a full day, and store it in a large container, it will cool pretty slowly in the fridge. Here are two options:

  1. Use cold water to prepare the Neocate, so it doesn’t have much cooling to do.
  2. If you prepare the Neocate formula with warm or room temperature water, start by pouring it into the container you’ll store it in. Put the lid on. Then fill a large bowl or pot with ice water. Nestle the container with Neocate in the ice water. Rotate it every few minutes. This will cool it down quicker than the cold air in the refrigerator would. After about 20-30 minutes, it should be plenty cold, and you can move it to the fridge.

It’s important to note not to use hot water when mixing your formula.
(See what temperature water should be when used to mix Neocate formulas.)

What temperature should the fridge be when storing Neocate?

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Ooh, good question! We actually don’t get this one very often. For storing anything perishable (food, leftovers, prepared Neocate, you name it), a refrigerator should maintain a temperature below 40° F (4° C).

Did you know that some spots in your refrigerator are colder than others? It’s true! In general, the door is the warmest part of the fridge. The coldest parts can vary based on the layout of the fridge (i.e. where the freezer and icemaker are).

Want a surefire way to know if your fridge is cold enough? Take it’s temperature! Place a cup of water in the fridge, add a thermometer, and wait a few hours. You can even move it around to different parts of the fridge to see the differences – just make sure you give the water a few hours to adjust to the new “climate.”

What is the best temperature for storing Neocate Splash? Can Neocate Splash drink boxes be stored in the refrigerator?

The best temperature for storing unopened Neocate Splash long term is room temperature. That’s because some nutrients don’t hold up well under heat, and some don’t do well in cold. So keep Neocate Splash away from sunny windows, air vents, hot appliances, and cold, drafty spaces. That goes for unopened cans of other Neocate products, too!

That said, you can put unopened Neocate Splash in the refrigerator ahead of time to cool down, such as for tomorrow’s lunch box. If it hasn’t been opened, we suggest you can keep it refrigerated for up to a week. This is because we just don’t know the effects that cold (but not freezing) temperatures over extended periods of time might have on levels of some nutrients. Remember though: If the drink box is open, it can only be refrigerated for up to 24 hours, but no more. And if someone has already taken a drink from the box, you’ve got 1 hour!

How should I prepare Neocate when going on a trip?

Ooh, you’re going on a trip? Where? Can we come? No, seriously, you don’t have to bring us with you, but feel free to share a picture of you traveling with Neocate on our Facebook or Instagram!

When you are going on a trip with prepared Neocate formula, follow these rules:

  • Mix no more Neocate formula than you need in 24 hours - otherwise you’ll have to toss what's left!
  • Keep it cold – below 40° F (4° C) – and store it for no more than 24 hours. That means you’ll need a well-insulated cooler and plenty of cold freezer packs or bags of ice.
  • C:\Users\mccandro\Pictures\family road trip.jpgIf you use powdered Neocate formula, take extra cans, just in case.
  • If you use Neocate Splash, take extra drink boxes, just in case.
  • If you use Neocate Splash, keep unopened drink boxes away from extreme temperatures. That means don’t throw it in the trunk in the extreme heat of summer or bitter cold of winter for long periods of time, like road trips.
  • Check out this post about flying with Neocate for more helpful tips.

Can you store Neocate frozen?

We don’t recommend it. Why, you ask? Plenty of other foods can be kept safely in the freezer longer than they can in the fridge, so why not Neocate? The short answer to this question is: we don’t know. Okay, that’s not a very fair answer, and it’s not the whole truth! The mid-range answer is that freezing temperatures can affect Neocate’s quality in ways we can’t predict. Still want more information, or don’t believe us? Here goes…

Freezing temperatures (below 32° F, or 4° C) can affect some nutrient levels. Some vitamins just don’t hold up well under really cold temperatures, and home freezers can actually get very cold! Also, frozen Neocate that thaws may discolor and/or separate into different layers. Gray Neocate in layers is not appealing! We cannot guarantee nutrient content or quality of Neocate products when frozen, which is why we don’t recommend it.

That said, some recipes that call for Neocate products are frozen, and frozen treats can be downright delicious. Ask your healthcare team for advice before you prepare Neocate in any of these recipes, or any way other than as directed on the packaging or as we suggest above. Find more information about cooking with Neocate here.

Can I still use Neocate past the expiration date?

Nope! We absolutely don’t budge on this one. If you don’t like this simple, straightforward answer, you can read this post that spells out in detail why we can’t recommend using Neocate past the expiration date.

How do I ensure Neocate dissolves properly?

Like any powdered formulas, sometimes clogged nipples happen. Following these steps can help ensure that Neocate formulas dissolve well:

  • In general, the warmer the water, the better the vitamins, minerals, and amino acids in Neocate powders will dissolve.
  • The warmest water you should use is 122° F (50° C) to ensure the nutrient levels are not affected. (Water that temperature is pretty warm, but not uncomfortbly hot is our best description without pulling out a thermometer)
  • DO NOT use boiling water to prepare Neocate powders. While Neocate powders dissolve REALLY well in boiling water, it destroys a lot of important nutrients.
  • Stir or shake vigorously for the best solubility.
  • You can try allowing formula freshly mixed to "rest" for a few minutes and then give it another vigorous stir or shake.
  • If you still have trouble after trying the above tips, give us a call at 800.Neocate to let us know!

Again, if we didn’t answer your question, check this post with other common questions to see if we cover it there. If not, we’re happy to help in the comments section below! What other questions do you have about mixing, preparing, serving, or storing Neocate?

-Rob

You can trust me! I've worked at Nutricia as part of the Medical Affairs team since 2010! My job is answering Neocate questions, and if I don't know the answer to your question, I know where to get it! I'm also a Registered Dietitian Nutritionist.


2016 National Autism Awareness Month

Posted 4.21.16 | Nutrition Specialist

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April is National Autism Awareness Month. This year, we at Neocate helped to spread a bit of awareness on the condition by sharing a very powerful video that was put together by the UK National Autistic society on our Facebook page.

 “I’m not naughty. I’m autistic”

 

**Warning: this film contains flashing lights, bright colors and loud, sudden noises

The video portrays the world through the eyes of an autistic boy. It gives a glimpse of what the world looks like through the eyes of an autistic child. 

It’s important to note that this video is only meant to spark awareness and is not intended to depict exact experiences of all who are diagnosed with autism. Autism spectrum disorder varies from one patient to another.

What is Autism?

According to CDC, Autism spectrum disorder (ASD) is a group of developmental disabilities that can cause significant social, communication and behavioral challenges. 

A recent report by the Centers for Disease Control and Prevention (CDC):

·       Estimated about 1 in 68 children in the United States have been

        identified with ASD

·       Almost half of children identified with ASD have average or above

        average intellectual ability

·       ASD occurs among all racial, ethnic, and socioeconomic groups

·       Boys are 4.5 times more likely to be identified with ASD than girls

·       Most are diagnosed after age of 4

According HHS.gov: “ASD is a developmental disability characterized, in varying degrees, by persistent difficulties in social communication and restrictive and repetitive behaviors, interests, or activities. We know that early screening and intervention at younger ages helps children get the most effective treatments earlier in life. Yet the CDC found that most children with autism are diagnosed after age 4, even though autism can be diagnosed as early as age 2.”

The following is a chart from 2016 Community Report from the Autism and Developmental Disability (ADDM) Network:

 

How did National Autism Awareness Month Begin?

According to the Autism Society website, nearly a quarter of a century ago they launched a nationwide effort to promote awareness of ASD. The goal was to promote inclusion, and self-determination for all.

“Assure that each person with ASD is provided the opportunity to achieve the highest possible quality of life.”

National Autism Awareness month is an opportunity for all of us to promote autism awareness, autism acceptance and to draw attention to diagnosis.

How to Celebrate?

One way you can get involved this month is by finding a local or an online event/activity to participate in. The Autism Society Affiliate Network page provides great starting point for this search. They even offer a map option that can be used for your search. You can also reach out to various organizations to see if there is a way for you to partner up.

Additional national organizations involved with Autism Awareness (just a few we came across in our search) include:

·       Autism Society

·       Autism Speaks

·       National Autism Association

·       The Arc Autism Now

If you participated this month to help spread awareness of ASD, don’t forget to comment below and share your experience.

-The Neocate Team


Which should I choose: Neocate Junior or Neocate Splash?

Posted 4.19.16 | Nutrition Specialist

Choosing the right formula when you have several options can sometimes be a difficult decision.

In the Neocate range of products for children over 1-year-old, you certainly have options! The Neocate Junior and Neocate Splash products are very similar, with a total of 10 (TEN!) options.

So how do you know which is the best option for you or your child?

In this post, we’ll walk you through some of the differences between these products, which might help you with this decision. As always, consult your healthcare team before making any formula switch, or if you or your child are ready to start using one of these formulas.

Supplement or Sole Source?

For some children, a Neocate product is used as a supplement to the diet, whereas for other children it is the sole or primary source of nutrition (meaning little or no nutrition comes from “regular” foods). If you’re not sure whether you or your child will use a Neocate product as a supplement or a sole source of nutrition, ask your healthcare team!

(Healthcare professionals can help here, as nutrient needs are different for every person, and vary based on age, weight, activity level, and medical conditions).

Neocate Junior and Neocate Splash products both provide some of every nutrient. Technically, any one of these products can meet 100% of a child’s nutrient recommendations. However, some of the Splash products have lower levels of many nutrients, and they may not be high enough for most children. The healthcare team should help decide which product is the better fit, but here’s a quick rundown of how these Neocate products are typically used: 

 

 

Formula Format

Are you looking for a formula that doesn’t require mixing? If so, then Neocate Splash, Unflavored or Neocate E028 Splash may be a better fit. Both of these formulas come in a convenient drink box and do not require adding water or mixing before consuming, just shake well! Another convenience? No refrigeration required before opening.

On the other hand, if mixing formula isn’t a problem, our Neocate Junior products may be a better choice. This product is also ideal when you’re traveling and want to carry a lot of formula in a little space. In some cases, a healthcare team may recommend that you have formula that’s more concentrated (e.g. when someone can’t consume a large volume of formula at once). In that case, Neocate Junior products can be concentrated, by adding less water based on the healthcare team’s guidance.

In some cases, families find that both products fit into their lifestyle! Neocate Junior products work well in the home, and Neocate Splash products are helpful on the go.

Flavor Variety

What flavor does your child prefer? Both formulas come in a variety of flavors because we want you to be able to find one that works best for you and your child! In some cases, you may be able to use a few flavors to help with variety. Here’s a rundown of the flavor options:

Fiber, Fiber, Who Wants Fiber?

Fiber is an important part of a typical diet. However, many people who need Neocate have very few foods in their diet that are sources of fiber. For that reason, we offer Neocate Junior with Prebiotics. Are you not sure if you should choose a Neocate product with or without prebiotic fiber? Your healthcare team can help! Here’s the breakdown of which Neocate products contain fiber for children older than 1 year:

We hope this has helped you choose which Neocate product may be best suited for your child’s nutrition needs!  If you have any questions, contact your healthcare professional to help you decide. For questions about Neocate products, please contact our Nutrition Specialists at 1-800-Neocate.

How did you decide which Neocate product(s) were the best fit for you?

-Ellen

Tags

Neocate  |  food allergy  |  nutrition  |  Neocate Junior


Got Milk? 17 Products with Hidden Dairy Ingredients

Posted 4.14.16 | Nutrition Specialist

Grocery shopping for a family with food allergies can be extremely challenging. It’s even more difficult when you are shopping for someone with a cow milk allergy because dairy ingredients can get lost in the food labels.

It’s very important to know where dairy is hiding. The FDA labeling laws require that foods containing milk must be labeled that they “contain milk.” This has to appear near the list of ingredients. However, several food and non-food products are not covered by FDA labeling laws, and small-batch “local” food producers aren’t always aware of the law. For that reason, it is extremely important to know how to read labels for milk products. Below are several products that you might not have realized contain milk that you should be on the lookout for:

Store-bought crackers- Several brands of store-bought crackers contain butter and/or milk powder. Make sure to check the ingredient label to be safe!

 

Granola mixes- Before picking up a granola mix, make sure the mix does not contain any butter. You can find granola mixes that are oil-based and do not contain any dairy. It’s always the safest to make granola mixes yourself so you know exactly what is in them.

 

Canned tuna- Several brands of canned tuna have casein in them, which is a milk protein. You might not think it, but some canned-tuna brands include hydrolyzed caseinate to enhance flavor.

 

Instant potatoes- It’s very important to read the ingredient label of instant mashed potatoes! Several manufacturers add butter and milk before they dehydrate the potato mix.

Flavored chips- The flavoring that is added to potato chips may contain milk. To avoid this hidden dairy ingredient, we recommend snacking on regular chips or completely eliminating them.

 

Deli meats- Meat manufactures often use the same slicers for meat and cheese products. The deli meats also sometimes contain casein, which is a milk protein.

 

Broths and stocks – Some brands include milk proteins or solids into their mixes. This applies to both ready-to-use versions as well as dry and canned bouillon.

 

Medications and vitamins- When checking the labels, watch out for ingredients that contain milk proteins like whey.

 

Beauty products – This is a big category. Items that you use on a regular basis like shampoo, conditioner, soap, makeup, etc. may contain milk. While you need to ingest these proteins to trigger an allergic reaction, using products that contain these ingredients topically (i.e you’re your skin) might spark a skin reaction,  like a rash or hives, for some people with a cow milk allergy.

Other items we came across in our searches that have popped up with the potential to contain milk proteins:

  • Dustless chalk
  • Chewing gum
  • Bread
  • Ready-to-eat meals
  • Instant iced-teas
  • Instant coffee/hot chocolate
  • Latex items, like gloves
  • Nail polish

To help you find hidden milk ingredients, here’s a great chart that Kids with Food Allergies put together. It provides a comprehensive list of terms that can indicate milk-derived ingredients that you should keep an eye out for on product labels.

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If you are uncertain whether or not a product contains milk, it’s always best to call and inquire with the manufacturer of the product. If they are unable to guarantee that the product is dairy free, lean on the side of caution and stay away. And make sure to ALWAYS check: a brand or food that was dairy-free yesterday could change any time!

For more information, check out our comprehensive list of foods with dairy ingredients. We also have a Recipe Booklet full of delicious dairy-free Neocate recipes.

Have you recently found any foods that have hidden dairy ingredients?


Failure To Thrive – What Who When Which Why and How?

Posted 4.12.16 | Nutrition Specialist

Anytime your child is sick can be an anxious time as a parent. A diagnosis can bring some comfort, but not always. One diagnosis that can often strike fear and guilt into the heart of any parent is the diagnosis of “Failure to Thrive.” Many parents immediately feel that they have done something wrong, or perhaps failed as a parent. It is easy to quickly worry that perhaps your child may have a dim future when hearing a diagnosis of “Failure to Thrive.” Let us put your mind at ease to know what this diagnosis really means, and that your little one’s healthcare team will have suggested solutions that are often simple and quick.

While the name of the diagnosis is unsettling, the reality of what it means is far less hopeless. “Failure to Thrive” simply means that your child is not gaining weight, or not growing at the rate expected in some way such as their height, head size, or other developmental milestone. “Failure to Thrive” is still a very important diagnosis that needs to be addressed quickly by a healthcare professional, but there is no reason to fear the worst. Most children will start to gain weight and get back on track with developmental milestones very quickly with some small interventions or changes to their diet. Perhaps after some medical attention, you may also receive a diagnosis from your healthcare team of what might be causing your child to struggle with weight gain (allergy to food or perhaps a related GI condition).

So how exactly do you know if your child is not gaining weight, or more importantly not gaining enough weight? Let’s discuss a few of the terms that you might hear from your pediatrician or dietitian, and look a bit more at some of the tools they might use or show you to help you prepare for this journey and treatment.

Healthcare Terms You May Hear

“BMI” is a term that you may hear often, but what does it really mean? BMI stands for body mass index, and it is simply a number based on height and weight. It is a way to judge your weight in comparison to you height and determine if your weight is healthy, too high (overweight or obese), or too low (underweight). For adults the calculation for BMI is simple, since we have reached our maximum height. For children and teens that are still growing, the determination of their BMI is a bit different.

Infants and children until the age of 20 will have their BMI given in terms of a percentile. Percentile is a math term that can confuse many people (healthcare professionals included). A percentile ranks you in terms of 100 people. The 50th percentile means that out of 100 people, you are right in the middle or that there are 50 above you and 50 below you. In terms of weight the 80th percentile means that out of 100 people there are 20 that are larger or weigh more than you and 80 that are smaller or weigh less than you. In the same way the 20th percentile means there are 80 bigger and 20 smaller than you in weight.

Healthcare professionals use a growth chart to plot your child’s growth and determine their BMI and the percentile that their weight falls in. Let’s take a closer look at growth charts and what your healthcare professional will be looking for when talking about your baby’s weight gain and percentile.

How Does Your Child’s Growth Measure Up?

So how exactly would a healthcare professional determine that your child is not growing at the expected rate? One tool that is used and that you may see is a growth chart. Growth charts are used for the specific reason of charting an infant’s growth through the age of 2 years, and then children through their teen years to determine if their weight gain, BMI or other growth measurements are typical.

Weight is the most sensitive measure for nutrition in infants and small children. Between birth and 2 years of age is an important time for development and weight gain, so during the first 2 years of life your healthcare team will closely monitor your child’s weight gain or trend in weight gain. If your child has been diagnosed with failure to thrive, then their weight will be monitored much more frequently and more closely to provide them with the care they need to get back on track.

Once they pass 2 years old they will be monitored on a different growth chart, and their weight will likely be monitored on a much less frequent basis. Their height is usually measured while standing after 2 years of age as well, instead of their length while lying down.

Here is an example of how weight and more specifically BMI is monitored on a growth chart after 2 years of age. You will see that children below the 5th percentile are usually classified as underweight while children between the 5th and the 85th percentile are often classified as a healthy weight. Children that fall above the 85th might be considered overweight while children over the 95th percentile might have interventions to avoid gaining more weight as they grow.

It is important to ask your healthcare team what is best for your child, and remember that every child is different. Your healthcare team will look at what is best for your little one in particular, and make recommendations or perhaps a diagnosis based on what your child is specifically experiencing.

When it comes to weight and BMI, it is important to know what percentile your child’s weight falls in, but more importantly to know the trend their weight gain is following. Whichever percentile your child falls in, it is important that they continue to follow the trend of growth for that percentile. So if they are in the 10th percentile, as long as they continue to gain weight and follow the line or trend of weight gain for the 10th percentile then they are gaining weight as expected. Each healthcare professional will use their discretion when making a diagnosis or caring for your particular child, so it is important to know that not every child will follow the same standards as another child or perhaps receive the same diagnosis when they experience similar issues.

Let me tell you some standards that many healthcare practitioners will use to diagnose failure to thrive. Often a child will be diagnosed with failure to thrive if their weight drops below the 5th percentile, and sometimes even if they drop below the 10th percentile. Rate of weight gain is the most important factor that many healthcare professionals watch, so if your child’s weight drops down to a percentile lower than the one their weight was previously following, then they will often be diagnosed with failure to thrive as well if there is no obvious reason for the change in weight.

Here are some links to growth charts so you can take a look for yourself and see what your healthcare team might be looking at when they are following your child’s weight gain.

·         World Health Organization (WHO) Growth Charts

·         Centers for Disease Control (CDC) Clinical Growth Charts

·         WIC Growth Charts

What to Expect for Your Child’s Growth

Most children have small changes in weight for common reasons such as an acute illness such as a cold, or changes in eating behavior as they grow and experience new foods and textures. You should not expect your child to have a smooth growth just like the line on a growth chart, so do not worry if your child’s weight bounces around a bit as that is perfectly normal. If your child has a sudden change in weight and there is no obvious reason, or if they drop either up or down into a different percentile category these are times to take a closer look and contact your healthcare professional if they are not already aware of the change in weight.

For many families a change in weight will simply require a small change to their diet. Perhaps some diet interventions to help your little one eat more in general, or maybe to eat more calories within the items they do already eat. Maybe your family just needs a little help guiding your child to get some food into their mouth instead of on their head like this little guy here.

As fun as the feeding challenges can be for any family, some families will need a bit more help getting their child to gain weight. If your child is diagnosed with a food allergy or a related GI condition, this might be the reason they are eating but not gaining weight like they should. It is possible that your child is eating well, but not able to absorb all the wonderful nutrients they are eating because of a food allergy or related GI condition. Hypoallergenic products such as Neocate can often be a wonderful tool for children to provide the needed nutrition while avoiding the items that they are allergic to. Another product that many healthcare professionals might recommend is Duocal, which is a great source of extra calories from carbohydrates and fat and still useful for many little ones with multiple food allergies since there is no protein. Duocal is also made in the same place as our powdered Neocate products, so you can expect the same great dedication to quality and procedures to avoid common allergens as our other Nutricia products.

If you are worried about your child’s weight gain, please contact your healthcare team to discuss these concerns with them. Early intervention can often help avoid this scary diagnosis and make sure your child keeps gaining weight and meeting their developmental milestones for a bright and promising future.

Was this information helpful in your experience with a diagnosis of failure to thrive? Let us know what you experienced or how Neocate was helpful for your child in the comments section.

--Kristin Crosby MS, RDN

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FPIES –What Who When Which Why and How?

Posted 4.5.16 | Nutrition Specialist

If there’s one thing we know about, it’s rare conditions that most people have never heard of. And if there’s one thing we like to do, it’s to help spread the word about those conditions! Today we want to share about one of the most curious conditions – FPIES. If you’re new to this disease, we’ll give you some of the basics. If you’re here because you have a child with FPIES, we’ll share some information that might be helpful, link you to other families’ stories as well as some expert interviews.

WHAT is FPIES?

FPIES. Pronounced like the letter “f” followed by the word “pies.” If you’ve never heard of it, allow us to help! FPIES stands for food protein-induced enterocolitis syndrome. FPIES is an allergic reaction in the digestive tract.

When someone says they have a food allergy, most people think of symptoms like anaphylaxis or hives or an itchy, swollen mouth. Those don’t happen with FPIES. FPIES is a non-IgE-mediated immune reaction in the gastrointestinal (GI) system to one or more specific foods. This means that the IgE antibodies associated with many food allergies are not involved in an FPIES reaction. That makes FPIES hard to test for. More on that below.

Unlike most food allergies, FPIES reactions are delayed and usually begin several hours after ingestion of the causative food. Often vomiting occurs 2 hours after eating a trigger food. For some people with FPIES diarrhea will follow around 5 hours after eating. Some children experience relatively mild symptoms, while others, about 20%, will have extreme reactions and may become seriously dehydrated and go into shock and need to go to the emergency department for treatment.

WHO can get FPIES?        

FPIES affects both boys and girls, typically when they are infants and young children, starting within the first year of life. While it usually affects young children, it’s thought that FPIES can affect anyone at any age, although reports of FPIES in adults have been rare and not well studied. At this time we don’t really know how many infants or children have FPIES, or the likelihood of a newborn developing FPIES. Hopefully we’ll have better data in the coming years!

WHEN do people “get” FPIES, and when will it likely go away?               

Often FPIES shows up when the first formulas or solid foods are introduced to a baby’s diet. Breast milk doesn’t cause an FPIES reaction, even if the mother has eaten a trigger food. For FPIES babies, it’s not uncommon for the baby to successfully breastfeed, only to have FPIES symptoms show up when a cow milk or soy infant formula is introduced into the diet. Many children outgrow FPIES by age three, but this can vary based on how severe their symptoms are and which foods they react to.

WHICH foods are FPIES triggers?

In the United States, cow milk and soy are the most common FPIES triggers. However, ANY foods can cause an FPIES reaction. Some foods that aren’t typically considered likely to be allergens are common food triggers for FPIES patients, like rice and oats. Fruits and vegetables are also not unusual as triggers among FPIES patients. Weird!

HOW is FPIES diagnosed and managed?

It can be difficult to diagnose FPIES because blood allergy tests only look for IgE-mediated food allergies. In fact, there is no valid laboratory test for FPIES yet. Usually FPIES is suspected after multiple reactions, because FPIES reactions are often mistaken for a stomach bug.

Once FPIES is suspected, the only way to diagnose it with certainty is to do an oral food challenge. This is where the healthcare team gives a patient the suspected allergen and watches them to see what happens. If the symptoms happen again, that’s a positive FPIES diagnosis! For infants diagnosed with FPIES, introducing new foods slowly – one at a time and for up to three weeks – is extremely important to identify both safe and trigger foods.

Once FPIES is diagnosed, there’s nothing to do but avoid the trigger foods and wait. Similar to many other food allergies, FPIES is usually outgrown within a few years. The healthcare team will often advise avoiding the problem food for a certain period of time and then conducting a “challenge” to see if the allergy has been outgrown. (A challenge means that the problem food is consumed again to see if the allergy is still present.)

For infants with FPIES to milk, a hypoallergenic formula like Neocate is needed, as standard infant formula will trigger FPIES. Up to half of infants with FPIES to milk will also have FPIES to soy, so a soy formula is usually not recommended. If FPIES to milk lasts beyond the first birthday, a hypoallergenic formula is recommended to ensure a source of key nutrients in the diet. For toddlers and children with FPIES, especially to multiple foods, a hypoallergenic formula can help supplement the elimination diet. For some children who have fewer triggers treatment is simply to avoid those foods.

Over the years we’ve had a number of blogs addressing FPIES. Today’s blog will be a refresher on Food Protein-Induced Enterocolitis (FPIES), recapping and highlighting information, past references and resources. Here we go!

I still have more questions!

That’s great! We’re glad you’re curious. We think FPIES is fascinating. It’s just too bad that FPIES symptoms are so scary and that it takes so long to get answers for many families. To learn more about FPIES we recommend checking out some of our previous articles about this interesting allergic condition:

Listen to one of the allergists who’s helped conduct research on FPIES to break down the ins and outs of FPIES in this Fact vs. Fiction video:

 

Watch this video to learn more about FPIES through the stories of several families and interviews with experts, sponsored by Neocate: 

 

What support is there for families with FPIES?

If your little one has FPIES, check out the I-FPIES at FPIES.org. This forum is a great way to learn more and connect with other families managing FPIES! 

FPIES Foundation has a spot for KIDS with FPIES, click here and check out their Kids in Action, Brag Board and Ways to Cope, designed with and for kids.

Kids with Food Allergies is a go-to resource as well. They offer daily assistance and practical food allergy management help and have a large online peer support group focused solely on children’s food allergies. Registration is free and a good place for giving and getting help with food ideas, recipes and cooking challenges!

While there are lots of questions we don’t have the answers to yet, we’re learning more about FPIES every day. What else can we tell you about FPIES?

-Jody (find out more about me here)

 


You have a food allergy – Now what? 5 Questions to Ask Your Doctor After Diagnosis

Posted 3.31.16 | Nutrition Specialist

For many families, getting to a diagnosis of a food allergy can be a tough journey. Many food allergies and related conditions start with mysterious symptoms that mimic other conditions or diseases, which can mean multiple doctor visits for some families to reach a diagnosis. For other families, symptoms can be severe enough to be life-threatening. While scary, this often makes finding a diagnosis simpler, but not always. Regardless of the path you took, a diagnosis is really just the beginning of your journey. Now what?

In this post, we’ll walk you through some suggestions for the next questions to ask your healthcare team. Now that your loved one (or you) has a diagnosis, what are the next steps you need to take to keep life moving forward?

What are our options?

You may have already received this information, but if not this is important. First, almost every food allergy is managed by avoiding the offending food(s). But for some food allergies or related conditions, you may have several options. Aside from avoiding the food, this could involve nutritional support (like from Neocate), therapies to help minimize the risk of allergic reactions, and drugs, like epinephrine. You also may have the option of combining several management options.

Ask the healthcare team 1) what all of your options are and 2) to clearly explain them. Also, if you have several options, make sure to have clear directions when each action is appropriate. A plan of action in case of emergencies and day-to-day management can help lower some anxiety you might be experiencing initially after getting the diagnosis.

What are the potential risks and benefits? What are the pros and cons?

This is a general question to ask for any healthcare advice you receive, but it probably applies best to drugs or therapies. When a doctor needs to prescribe a medication, for instance, he usually has reasons for choosing one medication over another. (For example: maybe they work equally well, but one has fewer side effects.) However, you should ensure it’s a best fit for you or your family member. It’s important to know how much one option will improve a symptom or side effect, and any potential consequences, before you agree to it.

Could this other formula (or medication or therapy) be an option?

You may already have some ideas for managing food allergies based on what you know, or maybe you’ll come across a story in the news, or hear about a new approach from a friend. Don’t be afraid to ask your doctor about things she doesn’t mention to you first!

If there is a particular type of approach (formula, medication, or therapy) that you are interested in, bring information about it in case the doctor hasn’t heard of it. There are so many different options out there, and your doc may or may not be familiar with all of them. You should always feel empowered to speak up when you want to know if an approach is an option for you or your loved one. Your doctor will appreciate your curiosity – it’s a sign that you’re ready to do what it takes to succeed!

Can you clarify this for me, or provide it in writing?

It’s so, so important to make sure you leave medical appointments with clear instructions. Doctors, nurses, and dietitians are all experts, and sometimes can forget to make sure we understand them. Don’t be afraid to speak up! Make sure that you completely understand your doctor’s explanations and instructions.

I find it really helps me to take notes during medical appointments. Even though the doctor’s explanation seems clear to me in the exam room, within 5 minutes it’s completely out of my brain! If the doctor is giving you instructions about a new medication or mixing formula, don’t be afraid to write it down and ask them to repeat it. Some medical offices now make a point to provide you with printed instructions, which can be a huge help.

If this works, what should I expect to see, and how quickly? How soon will I know if this doesn’t work?

These are very important questions to ask. Some approaches work more quickly than others. Some options may take time to adjust to. And some options won’t necessarily work for everyone. By asking these questions, you may save yourself some heartache.

For example, you might think that an approach isn’t working if you don’t see any improvement in your loved one’s symptoms within a week. However, that approach may take up to two weeks to improve certain symptoms. By knowing this when you leave the doctor’s office, you have an idea of what to expect, and you also know when to schedule another appointment if you don’t see improvement within a certain time frame.

What questions have you asked your healthcare team after diagnosis that you think would help other families?

-Rob McCandlish, RDN

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Starting Solid Foods and Food Allergies

Posted 3.30.16 | Nutrition Specialist


When my youngest son was around seven weeks old we discovered that he had multiple food intolerances. I ended up on an elimination diet, removing dairy, soy, eggs and nuts from my diet in order to continue nursing him. With some hard work I was able to successfully continue breastfeeding. I was his sole source of nutrition for many months; so when our doctor said it was time to start introducing solids, I was very nervous. Our baby was finally doing so well, feeling better, I didn’t want to rock the boat! 

We started introducing solids to our baby when he was around 6 months old. We followed our doctor’s suggestions of only adding one food at a time, and waiting at least 7 days in between new foods. We started with infant cereal. He refused to eat the infant rice cereal, so we moved on to infant oatmeal. Unfortunately for our little guy, the infant oatmeal did not agree with him; he broke out in hives within hours. So needless to say my first experience with feeding him solid foods was not as smooth as I had hoped! After some discussion with our doctor, we decided to delay grains for our baby, allowing his GI tract to mature a little more. Instead we started infant veggies and fruits, and luckily he did great! Sweet potatoes were his favorite!

Now my “baby” is five years old; and luckily he has outgrown all of his food intolerances! However, I will always remember how nervous and worried I was when our little guy tried something new. One thing in particular that I found helpful was being as informed as possible! I found great information from several different resources. 

The American Academy of Pediatrics (AAP) has some great information on basic food introduction, such as:

  • When is the right time? Can your baby hold his/her head up? Can he/she eat from a spoon?
  • What foods should I start with? According to the AAP, in general for most babies the recommendation is to start with grains, then vegetables and then fruit.
  • Finger foods can be given once your baby is sitting up and able to bring his/her hands to his mouth.

View AAP Starting Solid Foods Guide

I also found help in resources that understand food allergies! Kids With Food Allergies (KFA) has some great information to help navigate the way, as well as community support:

For babies with possible food allergies KFA suggests it is important to:

  • Go slow
  • Do not give highly allergenic foods first
  • Give small amounts

(Your healthcare team can give you more guidance on what foods may be best to try first!)

Read Feeding Allergenic Foods to Babies and Pregnant or Nursing Moms

A few more tips I learned:

  1. Wait for a good time to introduce new foods. Don’t rush it! Take the time to do it slowly and be relaxed for you and your baby! 
  2. Keep a log. Write down what foods you’ve introduced, and include any and all reactions your little one had, even “good” reactions, like a smile or talking! I found it was uplifting to see when my baby was enjoying his food!
  3. Ask for help! If you’re unsure where to start ask your doctor for help. They have a lot of good advice and information. If your pediatrician isn’t sure how to help, ask for a referal to a specialist (i.e. a pediatric allergist, registered dietitian nutritionist that specializes in food allergies, and/or a feeding specialist).

Introducing solids to your baby can be a fun time, but I also know from personal experience how challenging it can be for babies with food allergies. I would love to hear from you! What experiences have you had introducing solids? And what advice can you offer other parents in the same situation?

-Rachel Miller

Our post today is a guest blog entry from Rachel Miller, Baby E’s mom. Read Rachel's story



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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.