We often get calls from parents who are interested in thickening Neocate. In today’s post, we’ll explore the reasons for thickening formulas (or bottle-fed breast milk) and some tips for those of you considering it.

There are  two main reasons for wanting to thicken your child’s infant formula.

1) Reflux:

One reason is for gastroesophageal reflux. If your child suffers from reflux, the physician may recommend thickening their formula or breast milk by adding a small amount of rice cereal. This practice is somewhat controversial. Some physicians recommend it and others feel that it can actually worsen reflux for some infants. Thickening feeds is shown to reduce vomiting but there are mixed results in terms of its effect on reflux itself. Every baby is unique and for some babies, thickening with rice cereal is helpful.

If you are considering trying to thicken your baby’s formula, be sure to discuss it with the physician first. If your baby has food allergies, make sure the ingredients in the rice cereal are appropriate. We have heard from several parents that their child reacted to a brand of rice cereal that contains soy. As always, read the food labels carefully. It is possible for babies with multiple food protein allergies to be intolerant to rice proteins.

We don’t recommend thickening Neocate, nor do we recommend NOT thickening Neocate. It really depends on the circumstances and it is something for the physician and the parent to decide. That said, the nutrition in Neocate will not be harmed by the addition of a thickener so as long as the doctor or dietician recommends it, there is no problem with thickening Neocate. Keep in mind that thickening formula may make it difficult for the baby to drink it so you may have to adjust the nipple size accordingly.

2) Swallowing Problems; Dysphagia:

Swallowing problems, also known as “dysphagia”, is the other reason for thickening infant formula (or bottle-fed breastmilk). According to the Children’s Hospital of Boston, dysphagia describes the inability of food or liquids to pass easily from the mouth, into the throat, and down into the esophagus to the stomach during the process of swallowing. Swallowing problems can be dangerous because of the risk for aspiration, where food or liquids are inhaled into the windpipes and lungs, which can lead to pneumonia.

When a child has swallowing problems, the physician or feeding specialist may recommend altering the consistency of the diet to make swallowing easier. Sometimes the physician may recommend thickening with rice cereal and other times they will recommend a commercial thickener such as Thick-It. In the case of dysphagia, there is no problem using a thickener with Neocate, so long as it is recommended by a healthcare provider and it contains no ingredients that the child is intolerant to. 

Do you thicken your child’s infant formula or bottle-fed breast milk?

On behalf of all of us here at Nutricia North America, the makers of Neocate, we want to wish you and yours a happy, healthy and allergy-friendly Thanksgiving!

 We are very thankful that we have a great community of readers.  We love hearing and learning from you!

 What are you thankful for this year?

 -The Food Allergy Team 

Our post today is a guest blog entry from Lynda Mitchell.  We’d like to thank her for guest blogging for us.

When the Kids With Food Allergies Foundation opened its doors in 2005, Tracy, one of our members, told me her son had food protein-induced enterocolitis syndrome (FPIES), a rare allergy condition affecting the GI tract that was sometimes mistaken for an eosinophilic gastrointestinal condition.

When Tracy shared her story, I came to better understand FPIES and the unique challenges it presents both for the families dealing with it and for the physicians diagnosing it. I’ve written the following to help you better understand FPIES using personal stories moms have shared with us along the way.

Debbie’s story:

When [my baby] was 6 months old, my milk supply started to drop so I was told to give him some milk formula. …  Almost immediately, … he started to projectile vomit. We took him to the ER of our children's hospital. By the time they got to us, he had stopped vomiting and was just a happy baby. They patted us on our heads and told us it was just a milk allergy and sent us on our way. …A few weeks later, Ben started vomiting 1 1/2 hours after [feeding], and I was told (by the pediatrician's nurse) he just had the flu. But I could tell it was more than that.

A child with FPIES may experience what appears to be a severe stomach bug, but the "bug" only starts a couple hours after the offending food is given. Many FPIES parents have rushed their children to the ER, limp from extreme, repeated projectile vomiting, only to be told, "It's the stomach flu." However, the next time they feed their children the same solids, the dramatic symptoms return, often more rapidly after ingestion. 

Maria’s story:

Mason was "big and healthy" but nearly died (vomited until he became dehydrated, went into shock and stopped breathing) after starting rice cereal at 4 months of age.

FPIES reactions often show up in the first weeks or months of life, or at an older age for the exclusively-breastfed child. Reactions usually occur upon introducing first solid foods, which are typically made with dairy or soy, such as infant cereals or formulas. (Infant formulas are considered solids for FPIES purposes.) Although the most common FPIES triggers are cow's milk (dairy) and soy, other solid foods can cause an FPIES reaction, even uncommon food allergens, such as rice, oat and barley. 

Reactions are frequently characterized by profuse vomiting and diarrhea. Upon removing the problem food(s), all FPIES symptoms subside.

Tracy’s story:

A typical reaction takes Evan about four days to recover from. His most recent exposure was a single bite of a bagel with cream cheese on it. Within two hours he had vomited three times, and began diarrhea that put him through 32 diapers in as many hours. ...  Evan's reactions occur approximately two hours after he ingests food, with dairy in any form or strength causing his most severe reactions.

FPIES reactions almost always begin with delayed onset vomiting (usually two hours after ingestion, sometimes as late as eight hours after). Symptoms can range from mild (an increase in reflux and several days of runny stools) to life threatening (shock). In severe cases, after repeatedly vomiting, children often begin vomiting bile. Commonly, diarrhea follows and can last up to several days. In the worst reactions (about 20% of the time), the child has such severe vomiting and diarrhea that he rapidly becomes seriously dehydrated and may go into shock. One characteristic is that these children do not have other typical symptoms of allergy develop as part of these reactions (e.g., hives, wheezing, atopic dermatitis, swelling, etc.).

Debbie’s story:

 … At 7 months, I weaned him. … So, we gave him a bottle of soy formula (assuming it would all be fine because he was JUST allergic to milk according to all the docs. One and a half hours after Ben had eaten, he started projectile vomiting again and passed out. We took him to the ER and they decided to admit us. The allergists still didn't think it was an allergy—they thought these were all flukes—and I believed them. … They decided to do a soy oral challenge (because nothing was showing up on the RAST [blood allergy test] for soy). He failed it miserably!! They had to call a code blue and then admit us from the allergy clinic. It scared the allergists (and me for that matter) half to death. So, because they had called a code blue, they had to write an incident report. Because of that report, someone else looked at Ben's case and figured out that he has FPIES.

Debbie’s son went into shock, which is a severe reaction due to FPIES. As with all things, each child is different, and the range, severity and duration of symptoms may vary from reaction to reaction.

Brooke’s story:

One night in my frustration, I thought that she did well with the soy formula, so I would try a bottle of that again and see if she would eat. She ate about half of that bottle and then refused it. My husband took her and she started profuse vomiting again. I gave her a quick bath because she was soaked to the bone. She vomited the whole time; I was only able to put a diaper on her before she went white as a ghost and totally limp and unresponsive. She was like a rag doll and wouldn't move. We rushed to the local children's hospital branch close to our house. They immediately took her into trauma and started to work on her. She wouldn't respond to anything, not even needle pricks. They gave her oxygen, and IV, thermal blankets, etc. They finally got her stabilized and sent her to the main children's hospital downtown by ambulance. At the hospital, after a dozen different kinds of tests, she was started on Neocate® formula.

Since rapid dehydration and shock are medical emergencies, your local emergency service (9-1-1) needs to be contacted when a reaction like this occurs.

The most critical treatment during an FPIES reaction is intravenous (IV) fluids because of the risk and prevalence of dehydration. Children experiencing more severe symptoms may also need steroids and in-hospital monitoring. However, use of antihistamines and epinephrine are not helpful because FPIES works through a different mechanism than a “regular” IgE mediated allergy. Mild reactions may be able to be treated at home with oral electrolyte re-hydration (e.g., Pedialyte®). Because it's a rare, but serious condition, in the event of an emergency, it is vital to get the correct treatment. Some doctors provide their patients with a letter containing a brief description of FPIES and its proper treatment. In the event of a reaction, this letter can be taken to the ER with the child.

Dietary modifications vary, depending on the patient’s specific reactions. Often, infants who have reacted to both dairy and soy formulas will be placed on hypoallergenic or amino acid-based formula. Some children do well breastfeeding. Other children who have fewer triggers may just strictly avoid the offending food(s).

New foods are usually introduced very slowly, one food at a time, for an extended period of time per food. Some doctors recommend trialing a single food for up to three weeks before introducing another.

Jen’s story:

Ian did well until we tried to reintroduce milk at our GI doctor's suggestion. Ian vomited once with a small quantity of milk. A [blood] RAST test then came back negative and I was told to try the milk again. This is when the "textbook" FPIES reaction occurred. One and a half hours after ingesting a tablespoon of milk, my son experienced severe vomiting (at least 30 times) and pretty much passed out in my arms immediately. We had to be rushed via ambulance to the hospital where IV fluids were given. He recovered after a few hours.

FPIES is hard to diagnose because it is a non-IgE mediated immune reaction in the gastrointestinal system. This means that traditional blood or skin testing will be negative for the foods that cause FPIES reactions. Unlike traditional IgE-mediated allergies, FPIES reactions do not manifest with itching, hives, swelling, coughing or wheezing. Symptoms typically only involve the gastrointestinal system; other body organs are not involved.

Final Thoughts

FPIES is a rare condition that often goes undiagnosed, or can take a while to diagnose because traditional allergy tests are negative and the diagnosis is typically made based on symptom presentation. FPIES can be a very frightening condition to deal with, especially before it’s diagnosed when the child is experiencing severe and unexplained reactions to first foods or formulas with dramatic symptoms of lethargy or shock. A correct diagnosis and dietary avoidance of the offending foods is essential to manage and avoid further FPIES reactions.

I hope this information is helpful to you. If these stories sound familiar regarding your own child, print out the patient education resource below and speak with your child’s physician. 

 For more information, please visit:

Patient Education Resource:  What is Food Protein-Induced Enterocolitis Syndrome?

Online Support:  Kids With Food Allergies Foundation Online Community(includes a dedicated forum just for FPIES parents)

New FPIES Nonprofit Organization Forming:  International Association for Food Protein Enterocolitis

Lynda Mitchell is the founder and president of the Kids With Food Allergies Foundation(KFA). Lynda knows from personal experience that parents raising children with food allergies struggle to keep their children healthy and safe.  And, like her, many become empowered by telling their stories and connecting with each other for emotional support and information-sharing. To meet these needs, she first organized the online group POFAK (Parents of Food Allergic Kids) in 1998, to connect parents. Then in 2005, to help more families, she organized KFA as a national charity focused on day-to-day food allergy education and support for families. She has a master’s degree in health information management and informatics and lives in Doylestown, Pennsylvania, with her husband, a retired naval officer, her son, and her two Labrador Retrievers.

Names of moms and/or children in this blog post have been changed out of respect to the members of our community. 

 Next week, from October 20 – 23, we will be attending the  North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) Annual Meeting and Postgraduate Course in Orlando, Florida.  

NASPGHAN is the only professional society for pediatric gastroenterologists in North America, with a membership of over 1600 clinical gastroenterologists and scientists from the United States, Canada and Mexico with expertise in digestive, liver, pancreatic and nutritional diseases.

This is a great opportunity for us to connect with key decision makers and industry leaders, while also learning about the latest advances in pediatric gastroenterology, hepatology and nutrition.

To learn more about NASPGHAN and the annual meeting and post graduate course, check out their website and for the latest news updates, announcements and events follow them on Twitter (@NASPGHAN).

 [Picture from: http://www.naspghan.org/wmspage.cfm?parm1=493]  

 Back in July we attended the 9^thannual, APFED – the American Partnership for Eosinophilic Disorders  parent conference, in Greenville, South Carolina.

 As we’ve mentioned before APFED was started by Elizabeth Mays, a mother whose son had eosinophilic gastroenteritis, to create a place where families could “come together to share knowledge, educate themselves, arm themselves with credible information, meet and support one another, raise public awareness and generate research dollars.”

The group is an excellent resource for accurate, up-to-date information on eosinophilic disorders and related problems.  Not only does APFED increase awareness and educate patients and physicians, the group also works to increase funding for research.  

We especially love attending the conference because it is a great opportunity for children affected by eosinophilic disorders and their families to learn from experts and one another.  

During the conference we filmed videos of the attendees with our FlipCam and created a video to help increase awareness about eosinophilic disorders for our NeocateUS YouTube channel.  So check them out and feel free to share them! 

Also, if you enjoy receiving information from Neocate via video please let us know by posting a comment on our YouTube channel.  We are continuing to work on more videos and we would love to hear from you!

So, what kind of other videos would you like to see on our channel?   

In a recent study done in the UK, researchers surveyed restaurants about food allergies and found that most were misinformed.

To give some background, according to the study, deaths caused by food-induced anaphylactic reactions are increasing with most deaths being caused by food purchased outside of the home.

Allergen avoidance is always the most desirable form of prevention. and this is often easily accomplished in the comfort of your home. However, a late soccer practice, or meeting, or simply just wanting to enjoy the cuisine of a favorite local restaurant can make avoidance difficult.  This is because when choosing to eat out the responsibility of allergen avoidance is shared by the diner and the restaurant staff.

The researchers surveyed various restaurants and found that:

·        1 out of 3 kitchens, common food allergens like wheat, nuts, dairy, fish were not separated from other foods.

·        About 20% thought it was safe for an allergic customer to consume only a little of the allergen – and to pick the offending food out of the dish.

Probably the most concerning finding to come out of the research is that 81% of the restaurants reported they could provide a safe meal for allergic customers!

Keep in mind this study was conducted in the UK so similar findings in the US may not be as drastic. But in the world of food allergies, you can never be too careful! So when you eat out always remember it is your responsibility to be proactive and speak up about your allergies.

Also, If you’re looking for more information on dining out with food allergies, you can view our other posts on the topic here: Dining out with Food Allergies. These posts will help you and your family prepare for an allergy friendly dining experience.

- Christine

Study Reference:  Bailey et al. Restaurant staff's knowledge of anaphylaxis and dietary care of people with allergies. Clinical & Experimental Allergy.2010.41(5):713-717

Crohn’s Disease (CD) is a type inflammatory bowel disease.  It may occur in any part of the GI tract but usually it affects the small intestine and/or the colon.  Individuals with CD have periods of improvements and periods of “flare ups” when symptoms present.  Symptoms may include abdominal pain, diarrhea, rectal bleeding, fatigue, weight loss and in children, growth delay, etc.

CD is thought to be caused by an abnormal immune system.  One theory is that the immune system mistakes its own friendly gut bacteria and foods traveling through the GI tract as pathogens and triggers an immune reaction to attack them.  Treatment usually is with drugs (such as steroids and immune system suppressors) which are used to manage symptoms and to prolong the periods between flare ups as long as possible.

Nutritional Management of Crohn’s Disease: 
Nutrition is an important factor for patients with CD.  During flare ups, inflammation of the GI tract may disrupt the normal absorption of nutrients.  This can cause serious nutrient deficiencies so it’s important to assess the need for nutritional supplements.  During periods of severe symptoms, intestines may be unable to absorb enough nutrition to sustain life, so the physician may prescribe an alternate way to provide nutrition, such as temporary intravenous nutrition or enteral nutrition.  With enteral nutrition, the patients may consume an elemental formula, a nutritionally-complete liquid formula that provides all nutrients in the simplest form which makes it easy for the GI tract to absorb.  This allows the GI tract to rest and repair itself, while ensuring the patient is still receiving adequate nutrition.

Crohn’s Disease in Children: 
Long-term steroid use can have serious side-effects.  In children, the growth impairment associated with steroid use is a serious concern, especially combined with the fact children with CD are also more prone to consume inadequate calories.  Some families choose to treat flare-ups and prolong remissions using nutritional management rather than steroids.  An elemental diet or even a half elemental diet can help manage flare ups, prolong remissions and ensure proper nutrition & growth for children with CD.  E028 Splash and Neocate Junior may be useful for children with CD who are following dietary therapies.

 If you are searching for more information on the use of diet to manage CD, many families find the book “Beat Crohn’s” helpful.

 - Mallory

Image Source: http://digestive.niddk.nih.gov/ddiseases/pubs/crohns/images/Digestive.gif

National Digestive Diseases Information Clearinghouse  

This weekend, July 8 – 10, APFED – the American Partnership for Eosinophilic Disorders will be hosting their 9^thannual parent conference, the 2011 Eos Connection, in Greenville, South Carolina.

APFED was started by Elizabeth Mays, a mother whose son had eosinophilic gastroenteritis, to create a place where families could “come together to share knowledge, educate themselves, arm themselves with credible information, meet and support one another, raise public awareness and generate research dollars.”

The group is an excellent resource for accurate, up-to-date information on eosinophilic disorders and related problems.  Not only does APFED increase awareness and educate patients and physicians, the group also works to increase funding for research.  There is some nice APFED videos on YouTube and you can also “Like” APFED on Facebook and follow APFED on Twitter (@APFEDorg) to keep up with their latest news, announcements and events.

The conference is a great opportunity for children affected by eosinophilic disorders and their families to learn from experts and one another.

We will be attending the conference and look forward to seeing some of you there!  Be sure to stop by and say hello, we will be filming videos of the attendees with our FlipCam to help increase awareness about eosinophilic disorders. 

In recent years, there has been a lot of attention on gut flora, the good bacteria that live in your digestive system and play a role in proper digestion, nutrient absorption, immune function and bowel health. Research has shown that infancy and childhood are critical periods in the development of a healthy gut environment that includes this good bacteria.

Health Benefits of Probiotics:
One way to alter the gut flora is with probiotics. Remember that probiotics are live “friendly” bacteria that naturally live within the human GI tract and provide health benefits to the host. Certain foods, such as yogurt, contain probiotics and when you eat these foods, you can add more friendly bacteria to your system. Note that PRObiotics are different than PREbiotics, which are a type of fiber that feeds the friendly bacteria already living in your GI tract. Probiotics and prebiotics are sometimes used together, a mixture known as “synbiotics”.

Scientific research shows that probiotics may help reduce certain diarrheal diseases such as antibiotic-associated diarrhea and acute gastroenteritis (stomach viruses). In addition, probiotics have been found to lower the risk of food allergy and improve colic in infants. Many parents choose to add probiotics to their child’s diet, either with natural sources like yogurt or with supplemental probiotics.

Probiotics and Food Allergies:
Because of the role probiotics plays with allergies and digestive health, a lot of Neocate mom and dads have questions about whether probiotics might be helpful for their child with food allergies or digestive problems. This is complicated because many probiotic foods are off limits for children with food allergies. Most of the clinical studies on the health benefits of probiotics were done with the strains Lactobacillus GG, L. casei, B. bifidum and S. thermophilus, all of which are traditionally used in dairy foods.

The good news is that it is possible to find allergy-friendly sources of probiotics, such as pickles, sauerkraut and kombucha tea. Probiotic supplements may also be a good option, but use caution when choosing one to be sure it is safe for your child’s food allergies.  Ask your child’s doctor or nutritionist about whether a probiotic supplement is appropriate and see if they can recommend an allergy-friendly brand.  If they don’t know of a particular brand, do your research, check labels, call the manufacturers and then discuss what you find with the doctor to decide upon the most appropriate one.

Readers, do your children with food allergies take a probiotic supplement? Have you found an allergy-friendly kind? Has it been helpful for your child?

- Mallory

Photo source: Flickr User

Our post today is a guest blog entry from Renee O'Donnell, Baby N’s mom. Baby N has Food Protein Induced Enterocolitis Syndrome (FPIES) and her mom Renee is hard at work raising money for the FPIES United Family Fund. We’d like to thank Renee for guest blogging for us.

My name is Renee; I am a wife and a mother of three magnificent children. My youngest has FPIES (Food Protein Induced Enterocolitis Syndrome). She was diagnosed at 8 months after one of the longest battles of our life.

Our journey started the day we found out we were pregnant. Every mother becomes overjoyed with the thought of having a beautiful healthy baby. But to even think for one moment that something could be wrong is unfathomable.

Three weeks early baby “N” came. Everything was fine until her first bottle. Breast feeding was not an option due to some medicine I needed to go back on. We started her on regular formula. She drank it like a champ. But two hours after the bottle that was suppose to bring her nutrition, she started screaming and vomiting. We changed her to Soy and saw no change. After seeing our local pediatrician again and changing formula again. I asked to see a GI doctor.

The first thing I said to the doctor when she walked in to that room was “I think my daughter has protein intolerance!” At this point I had never heard of FPIES and neither had the doctor’s that had been seeing her. The doctor agreed that I could be right and put her on Neocate. This was our life savior. Who knew that one formula would change everything. There was no more vomiting, screaming, bloody diapers, rash, and even the movements that we thought were seizures seem to go away. We later learned these movements were Sandifer’s Syndrome.

After a few months of a happy little girl, we decided to try rice cereal. Rice cereal is suppose to be safe for everyone right?? The answer to that was NO, not to most FPIES children. We ended up in the ER hooked up to IV fluids. It was one of the scariest moments of our lives.

At that point I realized that something needed to change. We needed to get a second opinion. After seeing multiple doctors I had found an article online about a few kids having similar conditions. We contacted a Doctor in New York that gave us a name of an Allergist in our state.

It was then at 8 months old that we were finally heard and given a diagnosis. “Your daughter has FPIES.” Such bitter sweet words to hear. Yes, this was going to be neither simple nor easy. But for someone to tell us what was wrong with our child felt like a huge weight was lifted off our shoulders. We could start to work on what was going to make her better and not fighting to get the doctors to see that there was something wrong.

We still have a long battle ahead of us and many other medical problems to overcome. But at this moment we are just staying strong and working on getting our little one to grow. She currently has a GJ tube that we are putting Neocate Junior in and she is now taking Neocate Junior Tropical by mouth. Our hope is that more doctors will become aware of FPIES and understand the importance of starting babies like my little one on formulas like Neocate.