We hear from a lot of parents who are dealing with feeding difficulties. Often, feeding difficulties can be a symptom or side effect of food allergy related conditions such as Eosinophilic Esophagitis and other GI conditions. This can occur because eating is a learned developmental skill, and one of the few activites of daily life that a child can completely control. If a child experiences discomfort associated with food they can learn to avoid this discomfort by developing food selectivity, difficult mealtime behaviors, or food aversions. Even after your child’s condition has been treated and they are no longer in pain, they still may have lingering issues at mealtimes due to learned associations with food and discomfort. For others, they may simply not like the taste of their new formula and need some help adjusting to it.

Below are some tips that we hope can help make mealtime a little less stressful for both you and your child. As always, be sure to consult with your doctor and/or feeding therapist before trying anything new.

• Transition to new formula gradually. If your child is refusing Neocate when you first switch, try mixing a small amount of it with a large amount of another beverage that they will drink. Then you can increase the concentration of Neocate gradually, until your child will accept a bottle of 100% Neocate.
• Plan predictable and routine mealtimes. Sometimes when a child is on a diet consisting mainly of formula, they will “graze” throughout the day, drinking a small amount of formula here and there. Maintaining a predictable mealtime schedule, seated in a highchair or at the table can help increase their appetite, leading to an increased intake of formula. Predictability can also help decrease anxiety about eating, and promote optimal learning about the routines, customs and social richness of mealtimes.
• Try “repackaging” their formula. If your child doesn’t like to drink their formula from an open cup, try introducing it in a sippy cup or with a straw cup with a lid (or even better, a flavor straw!) to help decrease the smell and intensity of the flavor.
• Offer choices, when possible. For example, if your child brings his or her formula to school for lunch, let them choose which flavor they want each day. This will allow them to feel more in control of their mealtimes.

Have any of you dealt with a feeding difficulty? What tips have you found helpful?

Angela Haas MA, CCC-SLP

Pediatric Feeding and Swallowing Specialist

I have a friend whose daughter has severe gluten allergies. We often have long conversations about what it’s like to live with a child who has severe allergies, but one story she shared with me stands out. Her daughter was starting to get a horrible rash on her feet, and my friend could not understand what was causing it. After some investigative work, it turns out it was her daughter’s new flip flops! The sandals had gluten on them. She had found out by calling the manufacturer and was able to locate the culprit.

I was truly stunned by this! My friend works so hard at avoiding gluten by looking over all food labels and yet, there it was, in her daughters’ flip flops. This got me thinking; what other things are gluten and other allergens hiding in?

Here is a list of some surprising hidden allergens in products other than food:

Gluten

• Adhesives on envelopes and stamps
• Self-stick labels and stickers
• Latex or rubber gloves for house cleaning
• Art supplies like play dough, clay, glue
• Hand lotion
• Shampoos

Dairy

• Chewing gum
• Toothpaste
• Sunscreen
• Clothing

Soy

• Adhesives
• Body lotions and creams
• Fabrics
• Paper
• Printing Inks
• Soaps

What are some weird and unusual places you have found an allergen? It always helps to discuss your findings with other families to help them in avoiding accidental exposure and frustrations! We’d also love to hear about any “safe” products you are using.

-Christine

Sources: http://www.celiacsolution.com/hidden-gluten.html

http://www.celiac.com/articles/183/1/Additional-Things-to-Beware-of-to-Maintain-a-100-Gluten-Free-Diet/Page1.html

Our post today is a guest blog entry from Brittney, one of the founders of the Reflux Rebels, a support group for parents of children with reflux, MSPI and other GI issues. You can also find the Reflux Rebels on BabyCenter, where they have an active group of over 1,800 parents. We’d like to thank her for guest blogging for us.

I’m Brittney, a stay-at-home-mom to three beautiful kids; 2 bouncing, beautiful girls and a sweet baby boy.

My journey with infant reflux and severe food allergies started when our second daughter, Elliott (Ellie), was born. Ellie immediately started with symptoms of what I now know as reflux and Milk/Soy Protein Intolerance (MSPI) (for Ellie, her reflux was a by-product of her untreated MSPI and various food allergies).

In the hospital she appeared to be a normal newborn. She was a little “spitty” but nothing that struck us as odd. She only had one bowel movement in the hospital and thus began our journey to what seemed like hell and back. When Ellie was four days old we went to the new pediatrician because her belly was distended, she hadn’t had a bowel movement since we left the hospital, and she was visibly in pain. We were told to put her on soy formula (which our first daughter was successful with) and to try a few home remedies to relieve her constipation.

In the midst of the formula change and adjusting to life with a newborn again, symptoms of severe reflux appeared. Ellie went from screaming for a few hours a day off and on to screaming bloody murder for hours on end. In desperation, we went back and forth to the pediatrician begging for help and answers. We were told countless things. She just has colic… She’ll outgrow it… Try some cereal… etc., etc.

We were put on medications such as Axid, Zantac, Erythromycin, Prevacid capsules, and Prevacid Solutabs. Finally one night after Ellie screamed for 22 hours straight and the pediatric nurse assuring me she just had “colic”, we made the decision to go back to our previous pediatrician across the state line. The next morning we were seen by our current, open-minded (and amazing!) pediatrician and have never looked back. Ellie was started on 30mg of Nexium a day and switched to Neocate, an elemental formula for kids with severe food allergies.

Throughout the following months, Ellie underwent countless procedures, x-rays, blood draws, ultrasounds, and doctors’ visits to get her condition under control. We trialed and failed food after food after food with her. We were told all of those common myths by the GI and the only thing we were left with was frustration and a daughter completely and utterly miserable. After a few months of being on the Nexium and Neocate combination, things started to look up. By a year she was a new baby and now, at 2, I don’t even recognize the once miserable baby she was. She brings such joy to our home!

When our third child, Cohen, was born, I noticed his bowel movements were filled with mucous (a tell-tale sign of a milk intolerance). I immediately cut all dairy from my diet. A week or two later I cut all forms of soy. Like Ellie, while we were trying to get his milk situation under control, I noticed reflux starting to creep its way in (both a mechanical issue and an MSPI by-product for Cohen). We wasted no time and went back to our pediatrician to get him a proper PPI (30mg of Nexium also) at MARCI-kids dosing standards. After 7 weeks of continuously mucousy and bloody stools, the decision was made to also put Cohen on Neocate. Within two weeks of being on the Neocate and Nexium combo, he was good as gold and within 6 weeks, his stools were perfect! He’s a happy, healthy, BIG, 7 month old now. He’s the perfect (and final!) addition for us!

Why all the details?, you ask. I share the details with you to let you know that I can relate. I have been there and done it all.

• I’ve dealt with the horrible doctors and the nurses who act like you’re insane.
• I’ve been there with the screaming, inconsolable infant.
• I’ve been there fighting with the insurance to cover this particular test and that particular medication.
• I have been there fighting with my spouse because of all the tension having a GERDling and allergy baby brings.

I have been there. And now I want to be there for you. Our group, and The Reflux Rebels website, was created out of our desire to see no parent, family member, and infant have to suffer like ours have. We hope that you will find this information useful and informative.

And as always, know, It’s not “just colic”

I, along with Lauren, created The Reflux Rebels in January of 2009. Since then it has grown to over 1,800 members. In late 2009, Lorelei and Kim joined us as co-owners of The Reflux Rebels. We are currently in the process of becoming a legal non-profit organization and strive to give back to our community and those in need.

 - Brittney

Anyone who has eaten something and then experiences an unpleasant reaction has probably wondered if they have a food allergy. In fact, one out of three individuals thinks they may have a food allergy or may modify their diet due to a suspicion. Occuring to AAAAI statistics, yet only around 6% of children under the age of three are affected by food allergies, but most out grow these allergies as adults.

What all of this adds up to is that food allergies and food intolerances can be easily confused with each other. Yet these conditions are different in terms of their origin, symptoms and treatment. So what are the differences between the two?

What Are Food Allergies?

Let’s start with the more severe of the two: food allergies. Food allergies occur when the body’s immune system identifies a food as a harmful substance. When the body recognizes anything harmful it will produce antibodies, which are like small soldiers that protect our body’s health.  When the body produces antibodies directed against a certain type of food, it causes an immune response.  This then releases histamine and other chemicals that trigger allergic symptoms. These allergic symptoms are ‘red alerts’, which tell us that something is wrong.

Generally, it is the protein in foods that cause an allergic reaction. Food allergy symptoms may occur right after consuming the allergen or even hours later. These symptoms may affect the respiratory system, gastrointestinal tract, cardiovascular system or the skin.  In cases of severe allergic reactions there may be a drop in blood pressure or loss of consciousness. Some people have food allergies so severe that they are at risk for life threatening reactions known as anaphylaxis. Anaphylaxis is a rapid series of serious allergic reactions that affect a number of different areas of the body at once.  Fortunately, this can be treated with the prescription drug epinephrine, which is available on-the-go in a pen size injector – also known as an Epi-Pen.

Common food allergy symptoms include:

• Skin rash or hives;
• Swelling of the tongue and throat;
• Breathing problems including asthma;
• Vomiting and/or diarrhea; and
• Abdominal pain and cramping.

Currently, there are no medications that cure food allergies, so it is necessary for children and adults with food allergies to avoid allergenic foods.  It is critical to review food labels and ask questions about ingredients in recipes before consuming any foods. The Food Allergen Labeling and Consumer Protection Act of 2004

What Is A Food Intolerances?

Food intolerance is the inability to properly digest or fully process certain foods. This does not involve an immune response, but is still an adverse food-induced reaction that can cause uncomfortable symptoms similar to a food allergy. For example, lactose intolerance is caused when a person lacks an enzyme called lactase that breaks down the milk sugar called lactose. This can cause gas, bloating and abdominal pain when consuming milk products. Fortunately, lactase tablets are available without a prescription to help treat this food intolerance. 

Because the symptoms of food allergies and intolerances are often similar, it is helpful to get tested by an allergist and keep a food diary. A food diary keeps track of which foods are eaten and at what time, which can help determine if they are causing the symptoms of an intolerance or allergy. This will help the allergist to distinguish the correct diagnosis and treatment. Allergists can also conduct a skin test or blood test to determine if an individual is allergic to a specific food.

How did you determine if you or your child had a food allergy or food intolerance? Did you find allergy testing to be reliable, or was keeping a food diary more helpful?

- Reneé

As we near the end the month of May, our series on Hidden Food Allergens is wrapping up. Mallory and Nita wrote great entries with tips and ideas on how to best avoid hidden dairy, soy and gluten allergens in food.  Usually, there is a long list of items to avoid, so as Mallory mentioned, it’s helpful to print out your own list, laminate it, and take it with you on your grocery trips. It’s nearly impossible to memorize all those potential allergens you need to look out for on the product label. Having a list handy will cut back on the time you spend examining labels and make it easier for you to get what you need from the store and get on with your day!

Always remember, if you are uncertain whether a produce may contain an allergen, call the manufacturers and ask! The more educated you can be, the better.

Belonging to a food allergy social group or network can also allow you to share experiences and learn from other families who are in similar situations. Some groups you can join are the Food Allergy and Anaphylaxis Network (FAAN), Facebook and/or Twitter groups dedicated to food allergies (including the Neocate Facebook page), Kids with Food Allergies (KWFA), and the Food Allergy Initiative (FAI).  For example, if you just found out (from the manufacturer) that a certain food, surprisingly, had some traces of a particular allergen, you could share that information with others and help prevent accidental exposure from happening to another family.

So keep those Hidden Food Allergens lists handy and keep an eye on those labels!

What other actions have you done to help avoid those hidden allergens? We always appreciate hearing your advice!

- Christine