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

---

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

---

---

Kids will love this refreshing treat on a hot summer day!

• 4 scoops (18.5 g) Neocate Nutra powder
• 1.5 Tbsp applesauce, unsweetened
• 1 fl oz water
• ¼ tsp ground cinnamon
• ¼ tsp sugar (optional)

Combine ingredients and spoon into popsicle tray. Freeze overnight and serve.

Yields 1 serving

Nutrition Information:

Calories        100

Protein                   2 g

Carbohydrate          16 g

Fat               3.5 g

Calcium        132 mg

Vitamin D     1 mcg

Self-administrated shots of epinephrine (often referred to by their brand names: EpiPen and Twinject) are life-saving devices which can halt an allergic reaction and give a patient time to get to a hospital. For children and adults who experience anaphylaxis, an epinephrine shot is a matter of life or death. But it’s important for patients and caregivers to know how to properly work an automatic epinephrine shot. An incorrect or accidental administration can have dangerous consequences.

Accidental Epipen Injections & the Consequences:

In order for epinephrine to work properly, it must be injected into the thigh muscle. The greatest risk of an accidental or an incorrect injection is that injecting the epinephrine elsewhere can delay or impair the effectiveness during a time-critical emergency.

Aside from this, there are also risks of an accidental injection in and of itself. An accidental intravenous injection (which is very rare and would be fairly difficult to do on accident), is especially dangerous and can lead to hypertension and/or heart problems[1]. Most accidental injections (an estimated 94%) occur when a patient or someone trying to help them accidentally jabs their finger or thumb[2]. An accidental injection to the hands or feet can impair blood flow to these areas and can potentially cause tissue death. This however, is the worst-case scenario.

Symptoms of an accidental injection are not usually so severe and may include temporary numbness or tingling, pain and swelling at the injection site, elevated heart rate and/or heart palpations. Regardless, you should always seek medical attention in the event of an accidental injection; it’s better safe than sorry!

Know How To Use the Epipen:

It never hurts to refresh your memory on how to use your child’s epinephrine shot. You may even want to print out the instructions and keep them in a handy place (for example, fold it up and keep it with the epinephrine shot). Both EpiPen and Twinject have several resources to teach patients about the proper use of epinephrine shots.

• EpiPen
  
  • Downloadable instructions
  • Demonstration video

• Twinject
  
  • Downloadable instructions
  • Demonstration video

For best results, ask your child’s health care provider to demonstrate how to properly use an epinephrine shot[3]. Research shows that parents who receive hands-on training are better able to properly demonstrate how to use their child’s epinephrine shot[4]. Remind them to be careful! An ironic side note: An estimated 10% of accidental epinephrine injections occur in health care providers when demonstrating to their patients how to use it!

How many of you carry Twinject or EpiPens for your children? Have you ever had to deal with an accidental epinephrine injection?

-Mallory

---

[1] Epinephrine. Drug Facts and Comparisons. Efacts [online]. 2008. Available from Wolters Kluwer Health, Inc.
[2] Accidental EpiPen injections becoming more common. Annals of Allergy, Asthma and Immunology, April 2009.
[3] Pediatr Pharm. 2008;14(5) © 2008 Children’s Medical Center, University of Virginia.”
[4] Arkwright PD, Farragher AJ. Factors determining the ability of parents to effectively administer intramuscular adrenaline to food allergic children. Pediatr Allergy Immunol 2006;17:227-9.

It seems like every kid I know is talking about Toy Story 3 so chances are that your child is begging to go see it. However, a trip to the movie theater is a bit more complicated for a child with food allergies. Today we’ll go over some tips for having a safe and enjoyable movie theater experience.

The Movie Theater Concession Stand

If your child’s food allergies occur from ingesting food allergens, it’s much easier to control what they are exposed to. Your main obstacle will be the concession stand. Of course, we should all avoid this kind of food as much as possible but for a special occasion like going to the movies, it is fun to indulge a little.

Make sure you call ahead to inquire about any foods or ingredients that you are unsure about. For example, some movie theaters serve buttered popcorn that contains dairy while others are dairy-free. Use your discretion; if they can’t guarantee its safe, don’t risk it.

With prepackaged candies, its easier to identify ingredients and any potential allergens. Check the ingredients ahead of time to see what is safe for your little one! Some candies may be made of mostly sugar so although not healthy, they may be a safe special treat. For example, below are the ingredients for Sweet Tarts and Sour Patch Kids, both of which are free of the 8 major allergens.

• Sweet Tarts: Dextrose, Maltodextrin, Malic Acid, and Less than 2% of Calcium Stearate, Artificial Flavors, Blue 1 Lake, Blue 2 Lake, Red 40 Lake, Yellow 5 Lake, Yellow 6 Lake.
• Sour Patch Kids: Sugar, Corn Syrup, Modified Corn Starch, Citric Acid*, Tartaric Acid, Natural and Artificial flavors, Yellow 5, Yellow 6, Red 40, Blue 1.

*Keep in mind, some kids can be sensitive to Citric Acid and certain food dyes.

Allergies to Airborne Particles

If your child reacts to airborne particles, such as with peanut allergies, it’s more difficult to prevent exposure but there are various ways to keep the risk to a minimum. Here are some ideas:

• Try to see the movie at a time when the theater is not too crowded. This way, you can separate yourself from other viewers who may be eating unsafe snacks.
• Bring a seatcover. Not only are Plane Sheets great for when your little one with allergies is traveling, they can do double duty as a movie theater sheet!
• Bring Clorox wipes to clean the arm rests.
• There is often candy and other snacks dropped in the aisle, so if your child reacts on contact, dress him/her in pants vs. shorts and closed-toe shoes vs. sandals.

No matter how safe you are, it can be difficult to 100% eliminate the risk for an allergic reaction so be sure to pack your Epi-pen.

Alternatives To Help Avoid Allergens

• Bring Your Own Snacks:
  Although this is no-no most of the time, try calling the movie theater and explaining your situation. If they don’t offer any foods safe for your child, they will probably allow you to bring your own.
• Drive-in Movie Theater:
  Believe it or not, there are still some of these around!  The great thing about the Drive-ins is that you can bring your own snacks and seats, plus you can control how far you sit from other people and their snacks.
• Bring the Movie Theater Home:
  With features like On-Demand, you can get movies still in theaters right in your home. Invite some friends over and prepare some allergy-friendly snacks.

Have you picked up any tips or precautions for taking a child with food allergies to the movies?

-Mallory

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

---

[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.