Food Allergy Living Blog Tagged Results

There has been a lot of talk about dysphagia lately so we wanted to repost our blog from a few months ago called “Dysphagia, GERD and Silent Aspiration”

Dysphagia, GERD and Silent Aspiration

We’ve talked about Gastroesophageal reflux disease (GERD) before, and today we wanted to talk about dysphagia and aspiration, two things that can be associated with GERD.

GERD

Dysphagia refers to the inability of food and/or liquids to pass easily from the mouth, into the throat, through the esophagus and into to the stomach during the process of swallowing.[1] In more simple terms, it means “difficulty swallowing.” Many medical conditions can cause dysphagia but in children, it is usually due to physical malformations, neurological conditions or digestive problems like GERD.

How can GERD cause dysphagia?

GERD is a condition where the muscles at the end of the esophagus do not close properly and allow stomach contents to leak back into the esophagus. The acidity of stomach contents can cause inflammation in the esophagus (esophagitis) and may lead to ulcers and scaring. The scarring can result in narrowing of the esophagus which may make swallowing more difficult. Patients with dysphagia may experience pain in the throat or chest, heartburn, regurgitation or the feeling that they have something stuck in their throat or chest.

Aspiration:

Both GERD and dysphagia are risk factors for aspiration, where foreign substances (food, liquid and/or stomach contents) are inhaled into the lungs. GERD can cause stomach contents to flow back into the esophagus and dysphagia can cause food and/or liquid to remain in the esophagus after swallowing. If these substances are inhaled and move into the lungs, it can lead to serious respiratory problems, such as aspiration pneumonia[2].

Silent Aspiration:

Silent aspiration describes aspiration without any obvious signs of swallowing difficulty, such as coughing or breathing difficulty[3]. Silent aspiration is especially common among children with dysphagia. In fact, an estimated 94% of children with dysphagia experience silent aspiration. This form can be especially dangerous because caregivers may not know that aspiration is occurring until the child becomes sick.

Because GERD and dysphagia are risk factors for aspiration and because children are more likely than adults to experience silent aspiration, you may want to do a swallow study if your child has these conditions to rule out aspiration. If it is detected, don’t worry! There are various ways to manage it so that respiratory problems don’t develop, such as altering the thickness of your child’s food and drinks.

*Update*

Eosinophilic Esophagitis

Our previous post focused on GERD as it relates to dysphagia and silent aspiration but in this post, I want to mention Eosinophilic Esophagitis (EoE), which is another condition that is linked to dysphagia and silent aspiration. Patients with EoE may have feeding problems, vomiting, dysphagia, abdominal pain or food impaction. In fact, a recent study urged professionals to screen for EoE when patients present with dysphagia. If your child has been diagnosed with EoE, you may want to discuss the possibility of silent aspiration with your health care provider since dysphagia is a risk factor for aspiration. Symptoms of EoE are often controlled by diet so dietary management may be sufficient to control dysphagia and the risk for silent aspiration. Feeding therapy and food thickeners may be considered as well.

Have any of your children with GERD or EE experienced dysphagia? How do you manage the dysphagia and the risk for silent aspiration?

-Mallory

[1] Dysphagia. Children’s Hospital Boston:
http://www.childrenshospital.org/az/Site815/mainpageS815P0.html.
[2] Palmer & Drennan et al. Evaluation and Treatment of Swallowing Impairments. Am Fam Physician 2000;61:2453-62
[3] Lee J, Blain S, Casas M, Kenny D, Berall G, Chau T. A radial basis classifier for the automatic detection of aspiration in children with dysphagia. J Neuroeng Rehabil. 2006 Jul 17;3:14.

The European Rare Disease Organization (EURORDIS) established the first Rare Disease Day in 2008. Then, in 2009, EURORDIS asked the US-based National Organization for Rare Disease (NORD) to join the initiative and sponsor Rare Disease Day in the United States.

February 28, 2011 will mark the fourth Annual Rare Disease Day and there will be over 46 different countries participating! The goal is to raise awareness about rare diseases and the many challenges encountered by those affected.

This day is special for us at Nutricia because so many of our families are touched by rare disease. You are probably aware that we make medical foods for infants and children with food allergies and gastrointestinal conditions, but you might be surprised to know that we also make products for people with metabolic disorders, such as Phenylketonuria (PKU) and neurological conditions, like intractable epilepsy.

Our GI/Allergy Division (Neocate) makes medical foods for infants and children with food allergies, gastrointestinal disorders and various types of allergic diseases. There are several rare diseases that fall under this category, such as Food Protein-Induced Enterocolitis Syndrome (FPIES), Eosinophilic Esophagitis (EoE) and other types of eosinophilic conditions.

Our Metabolic Division makes medical foods for infants, children and adults with inborn errors of metabolism. Inborn errors of metabolism, also known as metabolic disorders, are rare genetic disorders in which the body cannot properly turn food into energy. People with these conditions must remain on a special, protein-restricted diet for their entire lives.

Lastly, our Neurology Division makes a formula called KetoCal, which is used by patients on a Ketogenic Diet (KD). The KD is a strict, high fat and very low carbohydrate diet that is used to manage intractable epilepsy, a form of epilepsy that cannot be controlled with anti-epileptic medications. Certain rare seizure disorders, such as Dravet Syndrome, are difficult to control with medication but often respond well to the KD. In addition to patients with epilepsy, the KD is also used by patients with rare metabolic disorders in which the body is unable to process carbohydrates for energy, such as Glut1 Deficiency and Pyruvate Dehydrogenase Deficiency.

In honor of Rare Disease Day, Nutricia would like to recognize our families that are coping with rare diseases, which may include:

• Eosinophilic Esophagitis
• Eosinophilic Gastroenteritis
• Glut1 Deficiency
• Pyruvate Dehydrogenase Deficiency
• Dravet Syndrome
• Lennox Gastaut Syndrome
• Methylmalonic Acidemia
• Propionic Acidemia
• Isovaleric Acidemia
• Glutaric Acidemia Type 1 and Type 2
• Phenylketonuria
• Tyrosinemia
• Maple Syrup Urine Disease
• Homocystinuria
• Very Long Chain Acyl CoA Dehydrogenase Deficiency (LCAD)
• Urea Cycle Disorders, including CPS Deficiency, NAGS Deficiency, OTC Deficiency, Argininosuccinic Aciduria, Arginase Deficiency, and Citrullinemia.

This year, families are encouraged to share their story via video! For more information or to get involved on Rare Disease Day, visit http://rarediseaseday.us/.

Rare Disease Day is extra special to me because my younger sister, Caroline, has a rare condition called Alternating Hemiplegia of Childhood. Is your child affected by a rare condition? Tell us your story!

-Mallory

Eosinophilic Esophagitis (EoE) is a condition that is gaining more and more recognition. Unfortunately though, the treatment options for EoE are not black and white. EoE may be treated either with medication, which has known long term side effects, or nutrition therapy, which has been shown extremely effective, but may be hard to follow for some.

Medication treatment for EoE is the use of steroids. However, this is not a long term fix. As EoE is a chronic condition, treatment with nutrition therapy is often discussed. Here are nutritional therapy options for EoE:

• Elemental Diet – A diet consisting of solely an amino acid-based (or elemental) products
• Elimination Diets – The removal of allergens from the diet.
  1. Tailored Elimination – Elimination of specific allergens based on allergy testing
  2. Six Food Elimination – Elimination of 6 top allergens based on the most common allergens seen in EoE patients

The Six Food Elimination Diet

The 6 Food Elimination diet is interesting because it bypasses the need of extensive food allergen testing. As you may know, allergy testing (skin prick tests and blood tests) are not perfect. There are often false positives which can make the treatment plan more complicated and time consuming. So what the 6 Food Elimination diet proposes is that, off-the-bat, patients will eliminate the top 6 allergens seen in EoE patients. The top allergens are milk, soy, eggs, wheat, peanuts/tree nuts, and seafood. One study¹ confirms there is a 74% success rate when using this type of nutrition therapy for EoE. (As a point of reference, an Elemental Diet shows a 95-98% success rate based on multiple studies)

Advantages and Disadvantages to consider

The advantages of using this nutrition therapy are that the EoE patients may still eat solid foods. It also eliminates the need for extensive skin and blood tests to check for food allergies. Important disadvantages to this diet therapy are that it may unnecessarily remove foods from the diet. This could increase the risk of the patients’ nutritional status. As some of you may know, it is hard just to remove milk and soy from your diet. Try eliminating 6 different allergens while maintaining your nutritional status! One way to ensure there are no risks for nutritional deficiencies is to supplement the diet with a nutritionally dense, hypoallergenic elemental product, such as Neocate®. This will help ensure the patient is getting all the protein and nutrients they need per day while guaranteeing that no allergic reactions will occur upon starting the elemental products. It is vital that EoE patients are monitored by a dietitian. The dietitian will help calculate how much of the elemental product the patient will need per day and also make sure the nutritional status of the patient is maintained.

Again, since there is a 74% success rate, if any symptoms persist after starting the 6 Food Elimination diet, see your doctor, as you may need a more “allergen safe” diet therapy such as an Elemental diet.

I hope this helped to shed some light on this nutritional therapy option for EoE. Every person will have their own treatment plan that works for them. Is anyone doing an Elimination diet now? How is it going for you? Have any tips you can share that may help others manage an elimination diet?

-Christine

^{1 Kagawalla AF et al, Effect of six-food elimination diet on clinical and histologic outcomes in eosinophilic esophagitis. Clin Gastroenterol Hepatol 2006:4(9):363-8}

Many of you have little ones who suffered for weeks, months or even years before finally getting a diagnosis. The diagnosis may have been a food allergy, gastroesophageal reflux disease (GERD), an eosinophilic disorder, food protein-induced enterocolitis syndrome (FPIES), multiple food protein intolerance (MFPI), or a similar allergy-related condition. The diagnosis explains your child’s symptoms and helps you manage them. Although you were likely relieved to have an answer and appropriate treatment plan, many of you were probably still left with many questions.

Research has given us many answers in recent years but there are many questions that still remain. Why did my child develop this condition? Is there any way to prevent this condition? What are the chances that siblings will develop the same condition? Is there a way to actually cure the underlying condition so that my child can eat a normal diet? The best way to get these answers is to support clinical research. There may be a research study on your child’s specific condition at a facility near you. Enrolling your children is the best way to get closer to the cause of these diseases and hopefully someday, the cure.

Finding a Clinical Trial

It’s easy to find trials on the U.S. National Institutes of Health (NIH) website: http://www.clinicaltrials.gov. Here are some clinical trials (which are seeking participants) that may apply to your child’s condition:

• Food allergies;
• Eosinophilic disorders;
• Infants and children with GERD;
• Pediatric inflammatory bowel disease;
• Short bowel syndrome in children; and
• General studies on pediatric allergic disease.

Obviously, pediatric allergic diseases are getting more and more attention from researchers. By joining a clinical study, you can help strengthen the research and do your part to help find answers. You can refine your search for a clinical trial by location so that you can find a clinical trial near you. You can even see a list of studies on a map.

Questions You Should Ask Before Enrolling in a Clinical Trial

Before you enroll your child in a clinical study, it’s important to understand exactly what a clinical trial is. Here are the answers to some questions that you might have. Chances are that you may be a little wary about signing your child up to be a “guinea pig” for science. And that’s okay; it’s your job as a parent to be careful!

You should make sure that you get all the facts before you decide to participate. The National Institutes of Health actually has a website dedicated to clinical studies for children that provides information and guidance for parents. For example, they provide a printable document (http://www.nhlbi.nih.gov/childrenandclinicalstudies/downloads/english/pdf/questions_to_ask.pdf) with questions that parents may want to ask when considering enrolling their child in a clinical study. Once you get all the information, your family can decide if participating in a clinical trial is right for you.

Have any of you participated in a clinical trial in the past? What has your experience been? Would you do it again?

- Mallory

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

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

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

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

- Sarah

We’ve written before about eosinophilic esophagitis or EoE, but wanted to share some information today about an important advocacy group dedicated to patients and families with EoE and other eosinophilic disorders known as APFED – the American Partnership for Eosinophilic Disorders.

How APFED Got It's Start

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 follow APFED on Twitter (@APFEDorg) to keep up with their latest news, announcements and events.

Annual APFED Conference for Caregivers

This weekend, July 16 – 18, APFED will be hosting their 8^th annual parent conference, the 2010 Eos Connection, in Denver, Colorado. 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.

- Sarah

In honor of National Eosinophil Awareness Week, I thought I would take the opportunity to highlight thisvery compelling video about two courageous boys living with eosinophilic esophagitis (EE). You can also read about their story on Neocate.com. We would like to thank Carson and Jake's Mom Chanda for allowing us to share her family's story and for all the hard work she has done to create awareness for EE. Watch YouTube video - Sarah

Eosinophilic disorders are on the rise in the US. Some clinicians have even referred to it as a “mini-epidemic”. One study I recently read suggested that it might not be a true rise in the number of people with eosinophilic disorders, but a rise in the recognition of the disorders as more and more doctors are able to identify and treat them. This is a very positive thing! But there are still people who do not know what eosinophilic disorders are. In order to help raise awareness of them, the week of May 16 – May 21, 2010 is designated as National Eosinophilic Awareness Week (NEAW).

The theme for this year’s Eosinophilic Awareness Week is APFED (in this case, it does not stand for American Partnership for Eosinophilic Disorders, but it is a clever theme!)

Monday, May 17^th ------------------ A: Awareness

Tuesday, May 18^th ------------------ P: Participate

Wednesday, May 19^th -------------- F: Fun with Family and Friends

Thursday, May 20^th ---------------- E: Educate Everyone

Friday, May 21^st --------------------- D: Donate Dollars

Each day of that week is dedicated to a way to raise awareness. Whether you are raising Awareness by sending out a mass email to all of your friends and family or if you are Participating in a Virtual Walk, the goal is to be involved and get the word out!

One great and influential idea would be to make a video about eosinophilic disorders and post it on Facebook or YouTube. I saw one recently that really illustrated the true pain and suffering that children with eosinophilic esophagitis (EoE) go through on a daily basis (not to mention how they deal with the restricted diet they are on). That video truly opened my eyes to the life of a person with EoE. Click here to view it.

So get the word out in any way you can! What are some ideas that worked for you to raise awareness of eosinophilic disorders?

-Christine

We would like to thank Kendra Tiedemann for guest blogging for us and sharing her family’s allergy story. In case you missed it, be sure to read her other entries about her sons Paulie and Norman.

In a typical conversation about my children's food allergies and eosinophilic esophagitis, I stress that they are just like their peers. They may not be able to eat or (in Paulie's case) even be near certain foods, but they can still do everything else that a typical child can do! They love going to preschool and playing with their friends. Paulie tells elaborate stories, and he sings or hums all day long. Norman makes spectacular sound effects, especially those related to cars and other motorized vehicles. They run around like wild animals and make me wonder where they get the energy! However, this is not a typical conversation and my boys could not safely engage in many typical childhood experiences without my pre-planning and behind the scenes work.

Every aspect of life is affected by the boys' food allergies, and that is the case for every member of our family. We no longer attend the large holiday gatherings that we once loved. The stress of knowing that similar events have led to the worst of Paulie's allergic reactions overshadows the joy of the celebration. Instead, we gather in smaller groups or remain at home to celebrate alone, scheduling family visits for quieter times. I look back at the Thanksgiving dinners, Christmas parties and Easter brunches of my own childhood and I hurt for my children, knowing what they are missing!

Planning for school is an ongoing challenge. Paulie and Norman both have extensive 504 plans on file with the school that lay out the accommodations that are needed. I work with the teachers and staff every step of the way to ensure that the boys are not inadvertently exposed to allergens while at school. Every item used in their classroom must be inspected and approved. This includes soap and cleaning supplies. Teachers know that they cannot use food or food packaging in lessons and crafts. However, allergens can be found almostanywhere. For example, paints may contain egg protein and shaving cream (used for tactile lessons) may contain milk. It is my job to communicate with school staff to catch potential exposures before they occur.

Medical appointments are also complicated. It is important that doctors and nurses wash their hands immediately before examining the boys, but not until I have checked the ingredients of the soap. Every new or refilled prescription is a potential problem due to the frequent inclusion of allergens as inactive ingredients.

It is a fine line that I walk with family and friends to prevent allergic reactions while also allowing my children typical life experiences. Every person who takes the time to learn about food allergies and eosinophilic esophagitis is one more person to help us walk that line. As Food Allergy Awareness Week (May 9 - 15) and National Eosinophil Awareness Week (May 16 - 21) approach, please take the time to share your story or mine. Let's work together to raise awareness about food allergies and eosinophilic esophagitis!

- Kendra Tiedemann

We would like to thank Kendra Tiedemann for guest blogging for us and sharing her family’s allergy story. In case you missed it, be sure to read last week’s entry about her other son Paulie.

This is Norman. He is three years old and has the spirit of a child who sees the world as his playground. He also sees much of the world through a looking glass. When he hears the ice cream truck, he runs to watch children gather with dollars in hand for treats that he may never taste. Norman is a boy with eosinophilic esophagitis, known as EE or EoE for those averse to tongue twisters.

Eosinophilic esophagitis is a condition of the gastrointestinal tract caused by an immune system gone awry. Eosinophils, white blood cells charged with fighting off parasites, mistake food proteins as foreign invaders. They flock to the esophagus to attack “invading” food proteins and remain there long after the food has passed through to Norman’s stomach. The eosinophils cause inflammation and other damage to the esophagus. The inflammatory process interferes with the body’s ability to properly utilize food that is taken in, causing a variety of symptoms that can make eating difficult or even impossible. Some EE patients must exclude just a few foods from their diets. Some, like Norman, react to every food and must rely on elemental formulas as the sole source of nutrition if they are to avoid life-long steroid treatments. Most are somewhere in the middle.

“But he looks so healthy!” That is the universal response to the above explanation for why Norman drinks formula rather than eating with the rest of us. That is true when he is on a diet consisting only of Neocate One Plus, Neocate Nutra and cane sugar. Those who have known Norman since birth know that it is complicated.

As an infant, Norman rarely slept more than 20 to 30 minutes at a stretch. He screamed in pain every time he soiled his diaper which, for many months, was more than a dozen times each day. His skin was burned and blistered despite our attempts to protect it with creams. Skin infections were not uncommon. When he wasn’t taking a cat-nap or screaming in pain, Norman was nursing. He pulled away frequently, arching his back and turning his head at an awkward angle. Seizure-like shaking was another indicator of severe reflux that was unresponsive to prescription medications. Despite the constant feedings and extreme modifications to my diet, Norman failed to thrive. The introduction of solid foods to his diet was disastrous. He delighted in each new food…until the pain of eating overcame the joy. Food trial after failed food trial, we could do nothing to ease his pain.

The day of Norman’s diagnosis was a day of celebration. We stopped giving him food and switched him to an elemental formula. Within a few days, he was sleeping longer and crying less. For the first time in his fifteen months, he began to thrive!

To those who say that Norman looks healthy, I say this: “Yes, he is healthy, but his eosinophils are still poised for attack. He is healthy because he doesn’t eat food."

- Kendra Tiedemann

We would like to thank Kendra Tiedemann for guest blogging for us and sharing her family’s allergy story. Stay tuned for her next entry about her other son Norman!

If you were to ask my son’s classmates about him, they would describe a typical five-year-old boy. They would say that Paulie likes cars, trucks, dinosaurs, and making noise. They might also tell you that he skips lunch every day. What they may not tell you is that Paulie is allergic to dozens of foods, or that simply sitting with his friends for lunch in the cafeteria would be a danger to his health.

Paulie began showing signs of allergies as an infant. He developed eczema by 10 weeks of age. Traditional therapies were ineffective. By five months, Paulie was wheezing daily. After hours on the phone, looking for an allergy specialist, I knew exactly what the next call would bring. “We don’t do allergy testing until after age two. Call again in 18 months.”

Our lives changed dramatically when Paulie, still just eight months old, was rushed to the hospital after he stopped breathing. The allergist we saw afterward indicated the symptoms were consistent with a severe allergic reaction. Allergy testing came up positive for some foods and animal dander. Removal of allergens from Paulie’s diet and reduction of animal dander in our home decreased symptoms, but there were still unexplained flare-ups.

Two months post-diagnosis, we were visiting family for the holidays where each day started with a hot breakfast. Paulie’s asthma and eczema flared each morning shortly after we entered the kitchen, but only sometimes during lunch and dinner. Finally the pattern was clear. He was reacting to food proteins in the air! We learned not to cook or reheat anything with eggs or pork around Paulie. Peanuts and tree nuts were banned from our home completely.

Paulie continued to sensitize to more foods over time. His allergy list grew from two foods to eight, and then to fourteen. Eventually, he was reacting to every food that he’d ever eaten. Additionally, Paulie was diagnosed with another allergic condition: eosinophilic esophagitis (EE or EoE). So, in addition to immediate and potentially life-threatening asthma and skin reactions, Paulie also has delayed GI reactions. These include esophageal pain, reflux and vomiting, generalized abdominal pain and skin-blistering diarrhea that hits one to three days after ingestion of an allergen.

It has been a year and a half since Paulie sensitized to the last of his safe foods. His sole source of nutrition is Neocate One Plus. We use Neocate Nutra, cane sugar and ice to give Paulie the option of sitting down with a bowl of something while we eat. He has adjusted well to his limited diet. When asked what he can eat, Paulie will rattle off his list as though it is carnival fare. “I can have special juice and special food and ice! Big ice, little ice, snow cone ice and ICE ice! And cotton candy and popsicles and freeze pops and…"

I am incredibly thankful that Paulie handles the restrictions so well, and often look to his example when we encounter food in an unexpected place.

-Kendra Tiedemann

The 3rd annual National Eosinophil Awareness Week is right around the corner -- May 17 through May 23, 2009. This week was created to help raise awareness for all eosinophilic disorders, including eosinophilic esophagitis (EE). EE is a rare inflammatory, gastrointestinal condition where the wall of the esophagus fills with eosinophils.

The number of people that are getting diagnosed with EE is rising but the condition is still relatively unknown. EE is often caused by food allergies and children with this condition are usually on a severely restricted diet. Because of this, many of them use an amino acid-based formula like Neocate as their source of nutrition.

For more information about EE, check out our EE 101 entry.

Since this rare disease often goes undiagnosed for months, National Eosinophil Awareness Week is a great time to help raise awareness about these conditions. To find out what events are going on during the awareness week, click here.

And to see what another family is doing to raise awareness about EE, check out this blog entry about Tami and her son Justin of Richmond, Virginia.

What are you doing for Eosinophil Awareness Week?

- Christine

Eosinophilic Esophagitis (EE) is a gastrointestinal condition that may be caused by food allergies. Although EE is rare, the number of people being diagnosed with this condition is on the rise and many families are beginning to share their stories in order to raise awareness.

Tami of Richmond, Virginia and her 6-year-old son Justin recently shared their EE story with a local TV station. From the time Justin was born, he could not keep his food down and was constantly sick. It took several years of Justin’s mother taking him from one doctor to another before he was finally given the correct diagnosis of EE.

Here is Justin’s story:

Many children who suffer from EE follow severely restricted diets and rely on amino acid-based formulas such as Neocate for their nutritional needs.

Common symptoms of EE include:

Nausea;
Vomiting;
Severe heartburn;
Difficulty swallowing; and
Weight loss.

Fore more information about EE, check out our previous entry, “Eosinophilic Esophagitis 101,” here.

And if you’d like to join Tami and Justin in raising awareness about EE, put May 17-23 on your calendars - it’s National Eosinophil Awareness Week.

- Nita

For those of you who are not familiar with EE, children that suffer from the condition follow severely restricted diets and rely on amino acid-based formulas such as Neocate for their nutritional needs.

Common symptoms include:

Nausea; Vomiting;
Severe heartburn;
Difficulty swallowing; and
Weight loss.

If you are interested in getting more information About.com has a great article you can read.

As Allergy and Asthma month goes on throughout May, continue to use it as another way to get the word out about food allergies, and next week, focus on EE.

-Marybeth

Hello Readers,

Last week, The Journal News, a newspaper in White Plains, NY ran an interesting story about a little girl who “can not eat food.” Three-year-old Hannah Devane has a condition called eosinophilic esophagitis(EE). It’s a very serious condition and many people don’t realize that food allergy is actually the principle cause of EE.

The story focused on the Devane family’s difficulty getting their insurance company to pay for the amino acid-based formula Hannah needs – which is really a shame. But discussion on the Journal News message board and on The Consumerist blog also showed me that there is a lot of confusion about EE. So, I thought I’d clear a few things up here.

• Kids with EE are allergic to the protein in foods such as milk, soy, nuts, eggs, etc. so the condition really limits their food choices.
• This allergy causes a build-up of white blood cells (eosinophils) in the esophagus which is a sign of inflammation. This inflammation causes difficulty swallowing, vomiting, regurgitation, and/or abdominal or chest pain. (The symptoms usually differ slightly for each kid.)
• Usually, EE kids can only have a very few “safe foods.” For Hannah Devone, it is rice and pears.
• Rice and pears alone cannot provide adequate nutrition for a 3-year-old. So, kids with EE rely on special amino acid-based medical foods (that won’t make them sick) to get the nutrition they need.
• Medical foods are not like vitamins or supplements you buy at a health food store. They have a special FDA designation, are deemed “medically necessary” for people with certain conditions, and families must have a recommendation from a healthcare professional to order them from the pharmacy or manufacturer.
• Some doctors do prescribe steroids for the EE symptoms so they can eat food, but steroids have not been shown to be as effective as amino acid-based medical foods and they can cause a lot of side effects.
• For more information, check out Act Against Allergy.

Be Well,
Dr. Y

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

Answer:

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

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

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

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

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. 

We’re always keeping our eyes peeled and our ears tuned for new news on eosinophilic esophagitis (also EoE or EE). This matters to us because many children with EoE  use Neocate products, as part of their special, healthy diet.


The Study

Dr. Charles DeBrosse and Dr. James Franciosi at the Cincinnati Children’s Hospital, where there is a Center for Eosinophilic Disorders, recently published a new research study about the long-term effects of EoE.  If you’re interested in reading the study here are links to the study abstract as well as a great summary.


The Results

The research team looked at over 100 patients with esophagitis; some had EoE, while others had chronic esophagitis, and compared them to patients who had no esophagitis. On average, this was about 15 years after the patients developed esophagitis. EoE research was in its early stages back then, and many patients went undiagnosed or were misdiagnosed. The participants answered questions about their symptoms and quality of life. The researchers then compared the results of each of the groups to see what differences really stood out.

Patients with EoE reported a lower quality of life and experienced more trouble swallowing and had food become stuck in their esophagus more often. Those patients with higher eosinophil counts in childhood had more trouble swallowing as adults. Also, patients with a diagnosed food allergy were more likely to have trouble swallowing and to have food become stuck in their esophagus.


The Bottom Line

As the researchers concluded, EoE “is associated with reduced quality of life and persistent symptoms 15 years after presentation.” They also noted that both increased eosinophil counts and the presence of food allergy in childhood increase the rate of trouble swallowing in young adulthood. It doesn’t sound very positive, but it’s what many of us expected: there is a strong link between food allergies and symptoms among patients with EoE, and high eosinophil levels can have a lasting impact.


What Can We Take Away from This?

Sure, the results and conclusion don’t sound great at first, but there are a few things to keep in mind. For one, a HUGE amount of research has been conducted on EoE in the last 15 years, and we’ve learned a lot! Patients who had EoE 15 years ago had a much different experience than patients with EoE today have. For instance, the way that EoE is diagnosed and treated has improved in that time. Also, many more of today’s health care teams can recognize, diagnose, and treat EoE, which is more widely known. And many teams also include allergy testing as part of the care process for EoE.

There are also options for managing EoE that are now in wide use. For instance, elimination diets and elemental diets (which we’ll blog about in a few weeks – stay tuned) have come a long way. Elemental diets (or amino acid-based formulas) can be especially helpful in getting EoE under control and are useful in diagnostic phases. These formulas can help improve trouble swallowing when EoE isn’t under control, which can mean better outcomes. They can also provide key nutrients when added to a very limited diet.

Children on elemental diets have lots of options these days in the Neocate family of products. We have Neocate Junior, which is available in several flavors. We also have E028 Splash, which not only comes in multiple flavors, but is also in drink box form, so it’s just as ready-to-go as your child! And for children who miss solid textures on an elemental diet, Neocate Nutra can provide a change of scenery, especially prepared in one of our recipes.


What did you learn from the new research that was published in June?

- Rob 


[Photo: Microsoft Images]

We’re excited to introduce you to our newest product — Neocate® Junior with Prebiotics, Vanilla!  This is the first and only flavored amino acid-based medical food with soluble prebiotic fiber for children with GI conditions.  Neocate® Junior with Prebiotics, Vanilla will help fight flavor fatigue and provide digestive support for a balanced gut for manychildren who suffer from milk or soy allergies, multiple food allergies or allergy-induced gastrointestinal disorders.

Just like Neocate® Junior, Chocolate and Neocate® Junior, Tropical, Neocate Junior with Prebiotics, Vanilla is an aspartame-free, hypoallergenic and nutritionally complete medical food for children over the age of one.

Children who use Neocate Junior should be under the care of a healthcare professional. Families with questions about Neocate Junior with Prebiotics, Vanilla or the whole Neocate family of nutritionally complete amino acid-based medical foods, please visit www.Neocate.com or call the toll-free number at 1-800-365-7354, Monday through Friday, 8:30 am – 7:00 pm EST.  

If your little one uses any of the Neocate products, you’ve probably heard the term “elemental diet.”  And if your son or daughter has eosinophilic esophagitis (EoE), you’ve probably also heard of an “elimination diet.”  These two aren’t always the same, so here’s a quick primer on the two.


Elemental Diet

The term “elemental diet” is a historic term that was used to refer to diets where the component nutrients were broken down into their “elements.”  Another term is “semi-elemental.”  In terms of nutrition, a semi-elemental formula, or hydrolysate, is one that has proteins that are partly broken down, or hydrolyzed.  These can be partially or extensively hydrolyzed.  An elemental formula, then, is one that contains only amino acids, the building blocks of protein.  Elemental formulas can also have some fats which are easier for the body to absorb than those found in the standard diet.

Now, technically speaking, elements are atoms, like you would see on the Periodic Table of the Elements.  So, technically, Neocate is not elemental, because it’s made of molecules, not individual atoms.  So in the strictest sense Neocate isn’t elemental: no formula is!  But, many health care professionals still use this term.  The more accurate term for Neocate, which you’ll see on our website, is amino acid-based formula.


Elimination Diet

An elimination diet is one in which one or several foods are eliminated from the diet.  There is no one “elimination diet:” it often varies from patient to patient.  Elimination diets can be based on the results of specific allergy testing (a tailored elimination diet), or more loosely based on common food allergies.  For instance, a six-food elimination diet is often used.  The idea behind an elimination diet, commonly used with EoE, is that you give the body a break from certain offending foods so that inflammation can calm down.  This works best if ALL foods that are causing a response are eliminated, which is why the six-food elimination diet isn’t quite as effective as a tailored elimination diet.

Where the lines get blurry between these two terms is that sometimes an elemental diet is used as a total elimination diet (so ALL food is eliminated!).  Basically a child might go on an elemental diet for a period of weeks, after which they usually start adding foods back to the diet one at a time.  That way there is no mistaking an allergic response to a specific food.  On top of this, an elemental formula like E028 Splash might be added to a six food or tailored elimination diet, to help make sure a child gets all of his/her essential nutrients when foods like dairy are removed.  What’s interesting is that studies have shown that the best response in EoE is to a fully amino acid-based diet.

Do you have any questions about the differences between elemental and elimination diets?

- Rob


[Image source]

You probably remember, like I do, dreading trips to the doctor as a kid. It seemed like nothing good came from those visits, except maybe a lollipop if I was well-behaved. Unfortunately, children who depend on Neocate have conditions like cow milk allergy and eosinophilic esophagitis(EoE), which can mean more doctor visits than usual. Those visits can involve some unpleasant tests. Here are some steps you can take to make those trips less scary for your little one.
 

Be Prepared

If nothing else, it can help you focus more on your little one and less on paperwork. Check out our previous blog that lists things you can do ahead of time to make the visit easier, especially when seeing a new doctor. The less stress you feel, the less stress your child will feel. Also, try to schedule the visit around meals and naps, when your little one won’t be tired or hungry.
 

Help Your Child to Prepare

It may seem silly, but simple things, like showing your little one what to expect, can make a big difference. First tell them, in simple terms, what the visit will involve. You may be able to read them a book (like this one about EoE) or watch a video about going to the doctor. It could even help to drop by the office ahead of time (to pick up paperwork) with your child, so he or she can become familiar with the office. Your child might enjoy role-playing a visit too – a toy doctor kit like this one can help them be more comfortable around medical instruments.
 

At the Office

On the day of your visit, ask your child which favorite toy, stuffed animal, or doll he or she wants to take along to provide comfort. Choices help children feel like they have some control. The doctor can examine the doll first, then your little one. This is a great way to show your child what to expect.

Many of us learn to associate the white lab coat with doctors at a young age. Seeing the coat can make us anxious. Many pediatricians do not wear one for this and other reasons, but if your child’s doctor does, you can ask them to remove it before coming in the room.

During the visit, remain calm and relaxed, since your child watches you to see how to behave. Give reassuring words and gentle contact during the exam. A distraction can also help, especially with shots. If you’re able to take a video game or a movie (on your phone), this can take your child’s focus off of the shot itself.
 

After the Visit

If possible, try to plan an activity that your little one enjoys after the visit. That way, going to the doctor becomes associated with something fun that is an activity to look forward to. After the visit is also a great time to break out the toy medical kit again, as this allows your child to think about the visit during play time.

What tips can you share with other parents to help make doctor visits less scary?

- Rob
 

[Photo: Microsoft Images]

Today’s post in our allergy-friendly meal idea series is the final topic: dinner! While breakfast and lunch may tend to be rushed or eaten out of the house, a lot of families still prefer to have dinner together at home. On top of this, the restrictions and rules that come with food allergies can make dining out very difficult.  Here are some dinner ideas that might help you add variety to the evening meal. As always, check with your little one’s health care team to make sure they are appropriate.
 

Neocate-Only Dinner Ideas

For children whose diets are strictly limited to amino acid-based formula, the same formula breakfast, lunch and dinner can be difficult for some children, especially older children. As we’ve mentioned in the previous two posts in this series, Nutricia offers multiple flavors in both Neocate Junior and Neocate’s E028 Splash. Many children have an easier time with restrictive diets when they have some input. Keeping a few flavors on hand can help kids to stay satisfied with an elemental diet. Try letting them chose their dinner flavor. Just like with breakfast and lunch, experiment with mixing different flavors of Neocate Junior and Splash with Neocate Nutra to come up with different flavors and textures. One of the easiest ways to offer variety is to use a blender. Mix one part Neocate formula with one part ice, blend well, pour into a fancy container or dish, add a straw or spoon, and enjoy! Neocate Junior Vanilla lends itself especially well to this shake format, and can be mixed with the other flavors or even with a fruit juice your child tolerates.
 

Top Eight Allergen-Free Dinner Ideas

If your child is on an elimination diet for eosinophilic esophagitis (EoE) or is avoiding all of the eight major allergens, you can offer some different food options along with one of the Neocate formulas. For younger toddlers, you can mix unflavored Neocate Junior with pureed foods that they tolerate. Vegetables and citrus flavors blend especially well with unflavored Neocate. If you’re putting together a full meal for the family, it may not be as difficult as you think to avoid the top 8 allergens and come up with something everyone can enjoy. You can easily build off of our ideas for allergen free lunches. Remember, while most processed foods have ingredients derived from the top 8 allergens, dining on whole foods makes the top 8 much easier to avoid. You may even be able to find family-sized convenience foods in natural or organic food stores that are free of the top 8, such as soups or frozen items.

Less Restrictive Dinner Ideas

For children who avoid dairy and only one or two other allergens, we have some great dinner suggestions in our online Neocate Food Allergy Cookbook, a compilation of recipes submitted by families. Mallory posted her top five dinner ideas from the cookbook, many of which use wheat, in a previous blog. One great thing about a lot of these recipes is that many can be made in advance and frozen or refrigerated for later use. If you decide to dine out, it’s a good idea to do some planning ahead with these tips we shared in a previous blog post.

As always, we recommend that you check any recipes on our websites or from other food allergy resources to be sure that the ingredients are safe for your child and ensure that the health care team is on board.

Do you have any allergy-friendly dinner ideas that have helped you that you’d like to share with other Neocate families?

Rob

[Image source: http://www.bonappetit.com/blogsandforums/blogs/bafoodist/2009/03/5-tips-for-handling-a-bad-wait.html]