Although most Neocate-users drink their formula, many patients receive Neocate through a feeding tube. This is referred to as “enteral nutrition”. Those of you with tube-fed little ones are already experts on the subject, however, I hope this post will be useful for those of you who are new to tube-feeding or for those of you who are just interested in learning how it works.

Tube-feeding provides nutrition to someone with a medical condition that impairs his/her ability to eat or drink (or impairs their ability to consume enough to sustain his/her nutritional needs). Nutrition is provided by a special liquid food that is given through the tube.

The liquid food contains all components of nutrition (protein, fat, carbs, vitamins and minerals) so it provides everything a person needs to live and be healthy. Some people are exclusively tube-fed while others continue to eat food while supplementing with tube-feeds. Fluids and medications (most of them) can also be given through the tube (which is a nice perk for kids who require some bad-tasting meds!).

Types of Feeding Tubes

There are various types of feeding tubes. A nasogastric or nasoenteral tube is inserted through the nose into the stomach or small intestine[1]. Alternatively, a tube may be surgically inserted through the skin and directly into the stomach or the small intestine in a procedure called a gastrostomy or jejunostomy, respectively. You may hear these refered to as a “g-tube” (short for gastrostomy tube) or a “j-tube” (short for  jejunostomy tube). Patients with g-tubes may get a feeding port (commonly known as a MIC-KEY button or a mickey tube), so that the outside feeding tube only needs to be attached during feedings.

Methods of Tube-feeding

There are 3 ways that tube-feeds are administered:

• Gravity: With gravity feeds, a bag of formula hangs above the patient so that the formula flows down the tube.
• Syringe: With syringe feeds, formula is administered by hand using a syringe to push the formula through the tube.
• Feeding pump: An electronic pump moves formula through the feeding tube at a controlled rate. Common brands of feeding pumps include the Kangaroo pump and the Infinity pump.

Feeding Rates

• Bolus feedings: Bolus feedings are relatively large in volume and given over a relatively short period of time. Feedings are given several times a day and the schedule more closely resembles “mealtimes” in comparison to a continuous feed.
• Continuous/drip feedings: Feedings that are given at a slow rate, over a relatively long period of time. Continuous feeds may be indicated for patients who are unable to tolerate large volumes.
• Combination: Some people may do a combination of both types. For example, they may receive bolus feeds during the day and a continuous feed overnight.

Enteral nutrition is such an amazing example of the impact that medical technology has on our lives. Before there was enteral nutrition, the inability to eat was a life-threatening situation. Although nobody wants to rely on a feeding tube unnecessarily, it is such a blessing for those who could not live without it.

My younger sister Caroline got her G-tube about 2 years ago (she was 11). We tried to avoid it for so many years but once she got it, it turned out to be such a blessing in disguise! She has never looked healthier; she gained some much-needed weight, her hair and skin look so much healthier, and she’s so much stronger. Our family is so thankful for it! If you have come across this post because your little one is getting a feeding tube, I hope this gives you a new and optimistic perspective!

Do any of you have experience with a feeding tube? What impact did it have on your child’s life? What are the biggest obstacles you experience with a feeding tube?

-Mallory

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[1] American Society for Parenteral and Enteral Nutrition (A.S.P.E.N.). http://www.nutritioncare.org/wcontent.aspx?id=266>

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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.

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.

Have any of you had experience with GERD, dysphagia or aspiration? Do you have any additional advice for little ones who are diagnosed with these conditions?

- Mallory

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[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.

This month we are doing a series of blog posts on hidden food allergens. So far we have discussed hidden sources of the allergens dairy and soy, and this week we will discuss hidden sources of gluten.

If your little one has a gluten allergy or intolerance, you are quite aware of the many challenges it causes. Gluten is a protein commonly found in all forms of wheat and related grains like rye, barley and possibly oats. It is also in many other foods consumed daily, such as cereal, breads and pasta. Depending on the severity of the intolerance to gluten, different side effects may occur. They may be limited to GI discomfort, such as diarrhea, gas and bloating.  A more severe intolerance would be classified as celiac disease (CD), a lifelong digestive disorder that causes damage to the small intestine and prevents absorption.

Gluten-Free Diets

If you or a loved one is following a gluten-free diet, it is important to be aware of where gluten may be hidden. Luckily, a gluten-free diet is not as limiting as it used to be. Now, gluten-free breads, pastas and prepared foods are available, which really aid compliance on a tricky diet!  You can purchase these gluten-free foods from most grocery stores or online.

As a general rule of thumb, if following a gluten-free diet, you should avoid the following ^1,2 :

Wheat and Gluten Ingredients:

• Anything which contains: wheat, rye, barley, spelt and millet
• Hydrolyzed wheat protein, sprouted wheat or barley malt
• Anything with the term “gluten”
• Words that refer to the specific kind of grain or wheat
  • Ex: bulgar, durum, farina, macha, matzo or matza, kamut, graham, semolina, seitan, fu, udon, couscous, tabbouleh

Generalized terms which should be avoided with gluten allergies:

• Malt/Malted milk/malt extract/malt syrup
• Soy sauce/Teriyaki sauce
• Flour
• Beer (most contain barley or wheat)
• Bran
• Germ
• Orzo (pasta)
• Cookie crumbs/cookie dough
• Bread crumbs
• Gravy
• Seafood analogs (imitation crab contains wheat)
• Bouillon or broth

Everyday products which may contain hidden sources of gluten:

• Lip balm
• Sunscreen
• Children’s stickers
• Stamps and envelopes
• Soaps and shampoos
• Washing machine detergent
• Toothpaste and mouthwash
• Medicine and antibiotics
• Ground spices

For a complete list of foods to avoid and other resources about celiac disease, visit www.celiac.com

Can you think of any other hidden sources of gluten that weren’t mentioned?

-Nita

Sources:

1. Hidden Ingredients Containing Wheat or Gluten: Tips and Tricks on How to Discern Gluten Ingredients http://food-allergies.suite101.com/article.cfm/hidden_ingredients_containing_wheat_or_gluten#ixzz0oD3Qh3V2

2. http://gfcf-diet.talkaboutcuringautism.org/hidden-sources-of-gluten.htm

As a follow up to our “Failure to Thrive: My child is underweight, what should I do?” blog, I would like to further explain the product Duocal.  It may be a good option for a child with failure to thrive (or FTT) as well as other conditions such as multiple food protein intolerance and conditions related to food allergies such as Eosinophilic Esophagitis (or EE), Gastroesophageal reflux disease (or GERD), and Atopic Dermatitis (or AD).

Duocal is a high calorie, protein-free powdered nutritional supplement that can be added to foods or beverages when additional calories are needed to gain adequate weight. Keep in mind that Duocal is not a formula and should not be used as a sole source of nutrition.

Duocal is made up of carbohydrates and fats. It is flavorless and super soluble so there are no changes to the taste and/or texture of the food it is being added to (which also helps with diet compliance). The Duocal 400g can comes with a scoop which provides about 25 extra calories per scoop.

The reason Duocal is unique is the fact that it does not contain proteins. This is important for a child who needs extra calories due to FTT or weight loss secondary to severe food allergies (keep in mind; only proteins can cause an allergic reaction).

Duocal is 100% milk free and is made in a milk free environment to ensure tolerance. Duocal is for children ages 1 and over. The amount of Duocal you or your little one may need per day is to be determined by your doctor or dietitian. The amount of Duocal needed per day really depends on what the specific nutritional needs are for the patient. Duocal is for children ages one year and older, so it can be used throughout ones life stages.

Duocal can be mixed with a wide variety of foods. Here are some quick tips on how to use Duocal to get you started.

(These are approximations, please check with your doctor or dietitian for exact amounts)

When using Duocal for:

· Beverages: Add 2 scoops of Duocal per 4 fl oz.

· Toddler Foods: Add 2 scoops of Duocal per ¼ cup of food.

· Mashed potatoes: Add 3-4 scoops Duocal per ½ cup of mashed potatoes.

· Soups: Add ~6 scoops of Duocal for a 16 oz serving (or one can) of soup.

The MyDuocal.com site has a lot of helpful recipes and complete nutritional information to help you better understand how to incorporate Duocal into your child’s diet.

Have you tried Duocal before? What kind of recipes did you make with it?

We are always excited to hear of new ways to use Duocal in helping patients thrive.

Christine

As a parent, it’s hard to hear that your child has been diagnosed with Failure to Thrive, often written as “FTT.” I often talk to parents who are confused by the diagnosis and not sure exactly what it means, so I thought I’d take the time today to answer some basic questions.

For those who don’t know, FTT is a medical term and is used to describe poor weight gain over an extended period of time. It is often used when diagnosing infants, children and the elderly.

What’s the background on Failure to Thrive?

FTT has been used for more than a century when diagnosing those who are unable to grow or maintain their weight properly; however, it still lacks concise guidelines because it describes a condition and not a disease.

Most diagnoses of FTT are in infants and children and can be a result of something else that may be going on — such as food allergies. The first few years of life are very important for growth and development; therefore it is important to ensure that your little one is gaining the proper amount of weight and has proper nutrition.  Most babies double their birth weight by 4 months and triple it by age 1; however, children with FTT often don’t meet those milestones and are lagging on their growth charts.

What causes Failure to Thrive?

FTT can be the result of a variety of social and medical factors.

Social Factors. With obesity on the rise, many parents fear that they are “over-feeding” their children, so they may restrict calories.  You will be happy to learn that children (especially young ones) are excellent self-regulators.  They lack the desire to eat simply because food is present or out of boredom, which many of us do not!  They eat out of necessity and because their body needs the nutrients the food will provide.  With that said if you have a young child, follow their hunger cues.  If you feel that they are gaining weight too quickly later in life, you may want to consult your doctor or dietitian.

Medical Factors. Most often FTT is caused by allergies or GI conditions such as:

• Gastroesophageal Reflux Disease (GERD), which can cause an irritated esophagus which may cause a child to refuse to eat;
• Chronic Diarrhea which causes the body to rapidly lose important nutrients and calories provided by food;
• Food Allergies to proteins in things like milk which require a restrictive diet that may lead to the inability to maintain or gain weight; or
• Illness when the body goes into overdrive trying to fight the infection, using up all of the nutrients it has stored to do so.

How is Failure to Thrive treated in infants and children?

Depending on the cause of FTT, it may be easier than you think to help your little one gain the proper weight he or she needs to get back on the growth charts.  If it’s caused by a disease or condition such as GERD, Short Bowel Syndrome or a milk protein allergy, you may want to introduce an elemental formula such as Neocate. This will not only aid in weight gain, but can also help with the condition itself.  Another option would be to add a product that contains additional fats and carbohydrates like Duocal. It is protein-free and virtually tasteless, allowing you to add it to foods or drinks consumed by the most picky and allergy-ridden eaters.

If you have been told that your child has FTT, make sure that you have your doctor note it on any medical necessity letter or documentation.  This may provide some leverage when applying for reimbursement for elemental formulas.

Have any of your little ones been diagnosed with FTT? How are you helping them to gain weight?

-Nita

References:

http://kidshealth.org/parent/food/weight/failure_thrive.html#

http://www.lpch.org/diseasehealthinfo/healthlibrary/growth/thrive.html