Author: Kristen Cole (page 2 of 3)

GI Motility

Have you ever thought about the fact that your GI tract moves? This is particularly important when thinking about childhood feeding disorders, especially considering how many GI related diseases and associated symptoms can cause a disruption in the GI tract’s continuous and vital movement.

Gastrointestinal (GI) motility is defined as the coordinated contractions and relaxations of the muscles of the GI tract necessary to move contents from the mouth to the anus. In order for proper movement to occur through the GI tract, it takes a combination of reactions from local reflexes in the GI tract (peristalsis), contraction and relaxation of intestinal muscles, and stimulation from neurons within the GI tract.  It takes a lot of work on the part of your brain and your GI tract to make sure that food and liquid are able to enter your mouth, go down your throat and esophagus, through your stomach, small intestines and large intestines and exit your body without slowing down, stopping or hurting.

There are many GI related diseases and associated symptoms that can negatively affect GI motility. The most common disorders associated with disruption in the movement of the GI tract that we see on the Feeding Team are GERD (Gastroesophageal Reflux Disease) and Constipation. Though we treat these two disorders most frequently, we also recognize that our children with underlying genetic disorders, chromosomal abnormalities, cerebral palsy, type 1 diabetes mellitus, previous abdominal surgery, Down’s Syndrome and several other chronic conditions have further impairment of their GI motility. We also very commonly hear that patients had some type of viral illness that preceded their trouble with “movement” in their GI tract.

Symptoms that these children present with include nausea, vomiting, feeling full quickly, refusing to eat, pain just beneath the sternum and weight loss. This can look different depending on the age and specific eating challenge among patients. For example, an infant who has impaired GI motility may eat very small volumes frequently and vomit if more liquid than they readily accept is forced on them. An older toddler may prefer to graze throughout the day and never take more than a couple bites of anything offered at one time, also having a highly likelihood of vomiting if further eating is expected. A preschooler may exhibit the same type of limitation of liquids and foods, but also may only feel the need to stool during meals. This is in response to a normal part of digestion, the “gastrocolic reflex” (the body’s way of recognizing the need for more room for more food by stimulating the GI tract to move things along and out through the anus). This reflex works very well in a normally functioning GI tract with potty training when you have the child sit on the toilet for 5 minutes after each meal. However, if the child has impairment of their GI motility and they have learned to hold their stool otherwise, this reflex can cause pain and frustration if the child is only stooling while eating with associated pain.

In our children who are wheelchair bound and/or who have dependency upon gastrostomy tubes, impaired gastric motility can look a lot like reflux. In fact, I often explain GI dysmotility as being more of the mechanistic part of reflux – food and liquid just do not go in the right direction! These patients have frequent vomiting, inability to tolerate bolus feeds or even slowly administered continuous feeds through their gastrostomy tubes. These patients also have infrequent bowel movements that are not readily remedied with stools softeners and stimulant laxatives alone. Of course, there are other components of being confined to a wheelchair with decreased movement and general motility, that also affect GI motility negatively.

In my next post, I will discuss some of the interventions we use to treat GI motility disorders. Thanks for reading!

 

Malnutrition Defined

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Everyone knows a few “nutrition-specific” words, like protein, vitamin and carbohydrate. Dietitians have very specific definitions of such words that are often quite different than the general public’s understanding. Malnutrition is one of those words. Malnutrition can be a scary word that brings up images of bone thin children with large bellies. Those images are examples of a very severe form of malnutrition rarely seen in the United States. Hearing the word malnutrition can catch parents off guard,  especially since failure to thrive has been the more familiar descriptive term in the recent past.

The Academy of Nutrition and Dietetics and the American Academy of Pediatrics follow the same guidelines for identifying and categorizing malnutrition.  We follow those same guidelines here at the NC Children’s Hospital. Diagnosing malnutrition and categorizing its level (mild, moderate or severe) is a critical part of developing a nutritional care plan for each individual patient.  We do our very best to incorporate everything we know about a child before assigning that child with the diagnosis of malnutrition. Our guidelines tell us to take medical conditions, questions about accuracy of measurements and recent illnesses all into consideration before diagnosing malnutrition.

In children, malnutrition is identified using several difference pieces of information and is based on the child’s age. Slightly different for children under age two, we generally assess the following:

  • How much weight is gained compared to the ideal amount for a child his/her age
  • How much a child weighs compared to his/her height
  • Weight loss relative to usual weight
  • Height or length for age
  • At times, we also measure a mid-upper arm circumference (MUAC) and compare it to the ideal MUAC for a child of the same age

So that we make consistent comparisons, we use a statistic called a z score. The z score not only provides cut off information about whether or not a child is likely to be malnourished, but also the degree of malnutrition. Z scores are very useful because they give us much more concrete comparisons for growth information over time rather than looking solely at standard growth percentiles. We can see shifts in z scores sooner than changes in growth percentiles. This helps us, and you, know if our plans are effective.

As we hope you can see through this description, malnutrition is a much more specific term than its predecessor, “failure to thrive”.  Failure to thrive simply means that a child is not growing adequately compared to a standard growth chart. This alone is not enough information to plan and monitor treatment.

Although the word malnutrition may feel negative, it really is a positive way for medical providers to communicate, identify and track the success of our treatments so that we can provide the best care possible.

Written by Lisa Richardson, one of our highly trained Pediatric Dietitians.

A Word of Encouragement from our Dietitians

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In her book First Bite, Bee Wilson wrote, “Seeing a child fed reassures you that you have done your duty as a parent, like a mother bird ferrying worms to the nest.”

Unfortunately, parents of children with feeding challenges miss that regular reassurance, which can leave them feeling frustrated and unsuccessful in parenting their child. Then, parents come into the feeding clinic and the dietitian asks, “What does your child eat?”  Parents, particularly those new to our clinic, take a deep breath and sometimes even look away before answering. In that pause between question and response, it seems parents hear a different question: “How good of a parent are you?”

Similarly, the medical words we use can sometimes feel negative. Malnutrition is one of those words. Providers use medical terms to communicate quickly and specifically with one another.  But, “malnutrition” isn’t specific to medicine and the word can bring up images of children who are being starved on purpose. We use the term very specifically as it medically defined by national organizations (more about that in our next post so stay tuned!!). This is a much more specific word than “failure to thrive,” because malnutrition is defined by specific growth parameters. Indeed, the word failure is not exactly helpful in understanding feeding problems. In most cases, by the time families encounter our team, they have been creative and persistent in the face of very big feeding challenges (“Ferrying worms to the nest”).

Please know that our questions are to gather information – not to judge you! The primary purpose for the dietitians on the team is to craft best strategies for each unique child to be well-fed and to thrive, often using formulas and alternative ways of feeding. Asking about what your child eats and classifying his/her nutrition status, helps the dietitians to formulate best ways to help your child. Our ultimate goal is that each of our parents will feel the reassurance of that mother bird ferrying worms to the nest.

Written by Lisa Richardson, one of our highly trained Pediatric Dietitians.

Welcome to Holland

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Sometimes, you hear things that really stick with you. I thought I would share one of those things for me, with all of you. If you are a parent of a patient followed by our Feeding Team, you understand the struggles in a variety of different forms, of caring for children who will not or cannot eat. It is so very hard and so very complex. It is not what you thought it would be. It can rock you to your core. It can make you question everything.

Sometimes, it is good to take a step back and tell you that we understand. We know this is a hard place to be and we are here to help. You are not alone in this struggle. Whether you have a child who has actually been diagnosed with a “disability” or not, enjoy this beautifully written article and find hope.

WELCOME TO HOLLAND
by: Emily Perl Kingsley

“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So, you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.”

c1987 by Emily Perl Kingsley. All rights reserved.

Appetite Stimulation

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Children who have feeding difficulty, food refusal, volume limiting, grazing, and poor weight gain often show decreased appetite and reduced hunger cues. One of the many medications we use in the treatment of patients with feeding difficulties is an appetite stimulant, cyproheptadine (Periactin). It is an antihistamine that is also used to stimulate appetite in a variety of different types of patients. We use it within the feeding team most often after we believe a patient has achieved “gut comfort.”  Gut comfort is just a simple way to say that one’s GI tract is comfortable and happy.

We treat GERD and Constipation first with different medications and broken down formulas that are easier to digest. We treat these underlying conditions first, as we do not want to boost the appetite of a child who is in pain or has discomfort. We find the use of cyproheptadine in conjunction with behavioral feeding therapy very effective in stimulating the appetite while gaining improved eating skills and behaviors at the same time.

Many children have improved appetite and desire to eat when taking this medication. We have seen children double their intake, ask for food for the first time in their life, and transition into a routine of eating that is much easier and more comfortable for them which results in weight gain and growth. Many children have also benefited from reduced vomiting and an improved ability to tolerate larger volumes of food/liquid in the stomach, also benefits of cyproheptadine.

The main side effect we have encountered is sleepiness, which may actually be beneficial for the child who has a pattern of poor sleeping, often seen in children with feeding and reflux issues. In this case, we recommend giving the medication at night. Some of our patients taking cyproheptadine have increased activity or hyperactivity, as is also occasionally seen in other medications in the same class (like Benadryl). These patients take it first thing in the morning.

There are times when cyproheptadine does not work the first time, and we may opt to try its use a second time later on in the treatment plan.

For many children, the hunger effect will wear off after a period of time of use. Parents report that the medicine doesn’t seem to be working as well. At that point, we cycle the medication. Some children take it for 5 days on, 2 off; some take it for 3 weeks on, 1 week off; some children never cycle it. The schedule is tailored to the individual needs of the child.

We find the use of cyproheptadine to be very beneficial for our feeding team patients in increasing appetite and reaching our goal of optimal weight gain while more easily gaining proper feeding skills. One of our patient’s parents referred to it as “liquid courage” as his daughter tried foods she had never tried previously while taking cyproheptadine.

What is a Modified Barium Swallow Study (MBSS)?

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Does my child need a Modified Barium Swallow Study (MBSS)?

Feeding disorders are complex in nature and can have many underlying etiologies, which is why an interdisciplinary team is the best way to evaluate and treat feeding.  Using the medical motor behavioral approach to feeding, the speech pathology will evaluate oral motor skills and function, positioning during feeding and swallow safety.  A Modified Barium Swallow Study (MBSS) will be ordered if there is a question of swallowing safety identified during the clinical exam.   The MBSS is a radiographic study that examines the structure and function of the mouth, throat, larynx and upper esophagus during and after the swallow performed by a speech pathologist and radiologist. Food and liquid is mixed with barium, (a contrast that can be seen under xray) the child eats and drinks, and it is viewed on a monitor. The parents are in the room and are watching the same images as the speech pathologist and radiologist.  In our practice we will order a MBSS to evaluate aspiration risk or food or liquid entering in the airway. Our team will not order a MBSS to evaluate chewing skill or evaluate vomiting or reflux symptoms or on the basis of texture selectivity or picky eating behaviors.

 

What should I expect during the Modified Barium Swallow Study (MBSS)?

The MBSS is a test that evaluates eating and drinking, therefore we want your child to eat and drink, willingly, during the test. It is important to bring your child hungry so we can get the best most useful information out of the study. Bring home cups or bottles, any special utensils or food or formula.  The child will sit in a chair or tumbleform chair to participate in the study. The parents are asked to assist and encourage the child to eat and drink.  The speech pathologist will be right there in the room deciding which consistencies and food to offer, possibly changing bottles, cups, straws or utensils. The actual time the camera is on is usually no more than 5 minutes.  After the test the speech pathologist should review the study, explain the results, and offer recommendations based on the information gathered during the study.  For feeding team kids, the speech pathologist will always discuss results with the team and results will be reviewed at the next visit.

Written By: Sarah Studley, MS, CCC, SLP

Blenderized Tube Feeding

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Children with feeding disorders may require G-tube feeding to assist them in meeting their nutrient requirements. G-tube feedings may be given with a commercial formula, homemade blenderized tube feeding or commercialized blenderized tube feeding. Speaking with your medical team (physician, nurse practitioner, registered dietitian and feeding therapist) can help to guide your decision on which formula is best for your child.

Parents who choose blenderized tube feeding often do so due intolerance of commercial feeding formula, food allergies, desire to use “real food” or for improvement in GI symptoms such as gagging, retching, vomiting, reflux and constipation. When choosing to use blenderized tube feeding you have the option of using a commercial blenderized tube feeding or homemade blenderized tube feeding.

Homemade blenderized tube feedings are less expensive and can give more of a variety of foods. However, they also can raise food safety concerns, have a short hang time (~2 hours), may have unpredictable nutrient levels by using non-standardized recipes and are not often covered by insurance. Choosing homemade blenderized tube feeding will require close work with your child’s registered dietitian to ensure adequate nutrients are provided.

Commercial blenderized tube feedings are convenient, processed to ensure food safety, have a longer hang time of 8-12 hours, standardized nutrient levels and may be covered by insurance. Below is a comparison of several commercial blenderized tube feedings:

 

Nutrients Nourish Real Food Blends Compleat Pediatric
Serving Size 355 mL (foil pouch) 282 mL (pouch) 250 mL
Calories (Kcals) 400 330-340 250
Protein (g) 14 11-14 9.5
Fat (g) 17 18-20 9.5
Carbohydrate (g) 50 28-32 34
Fiber (g) 7 2.2-4 2
Water (%) 76% 75-78% 88%
Cost per 8 ounces $5.33 $4.16 $3.12
Additional Info Contains no dairy. Complete source of nutrition Contains no dairy however not a complete source of nutrition Contains dairy. Complete source of nutrition

 

Whether you decide to use a commercial, homemade or commercial blenderized tube feeding the UNC Pediatric Feeding team is here to help and support you during the entire process.

Written by Kerry Gibson RD, CNSC, LDN

Reflux

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This picture is a good window into how we really believe a lot of our patients feel when they experience reflux. We get a great deal of questions about reflux, so I thought it would be helpful to do a brief post on what exactly we see, observe and gain from history when evaluating a child for reflux.

Reflux is described in many different ways among medical providers.  First, there is often a distinction made between GER (gastroesophageal reflux) and GERD (gastroesophageal reflux disease). In the clinical practice guidelines from 2009, two of our professional organizations, The North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN) and the European Society for Pediatric Gastroenterology, Hepatology, and Nutrition (ESPGHAN), differentiated them this way:

“GER is the passage of gastric contents into the esophagus with or without regurgitation and vomiting. GER is a normal physiologic process occurring several times per day in healthy infants, children, and adults. Most episodes of GER in healthy individuals last <3 minutes, occur in the postprandial (immediately after eating) period, and cause few or no symptoms. In contrast, GERD is present when the reflux of gastric contents causes troublesome symptoms and/or complications.”

We do not treat children with medications who have gastroesophageal reflux, even if we call it “reflux”. These children do not have symptoms, other than the occasional effortless spitting up while maintaining their usual temperament and activities of daily living. These children most often progress seamlessly from breast or bottle feeding, to baby food stage 1 purees, followed baby food stage 2 purees, then meltable solids, to soft chewable table foods and end up eating solid table foods.

The children who come to our clinic have GERD. These children may have a number of the following symptoms:

  • forceful vomiting with associated crying, screaming, refusal to eat immediately following a vomiting episode – and not with current illness
  • spitting out food, refusing to swallow after chewing
  • inability to progress beyond a stage of normal childhood eating
  • choking with eating or drinking
  • difficulty sleeping (waking frequently with coughing, choking, crying)
  • head turning or swatting when caregiver attempts to feed
  • no interest in eating, only preferring to drink
  • preferential eating (only eating foods with specific packaging, from certain stores, with certain colors)
  • reswallowing, “chewing” on contents that come back into the mouth from the stomach
  • eye tearing with eating
  • gagging
  • retching

Because GERD symptoms vary in each of our patients, your child actually may experience GERD without any of the above symptoms. An example of this would be a neurologically compromised patient who turns his/her head slightly and grimaces each time he/she is fed through his/her gastrostomy tube.

Our team works tirelessly to evaluate each patient that we encounter to the best of our ability. The use of medications for the treatment of GERD is controversial, as there are risks associated with any medication, especially in pediatrics.

The most important first step in choosing the right diagnosis and associated treatment is obtaining a very detailed history, picking up on any subtlety that could potentially be related to GERD. We have found that treatment of GERD with both formulas and medications positively impacts outcomes of our patients.

I look forward to sharing specific treatment options in future posts, to best inform all of our parents about benefits and risks, along with candid commentary about why we treat patients the way that we do. In short, it’s because we genuinely care about best outcomes…and use a variety of ways to get there.

When Purees Have a Purpose: Part 2

 This blog post is a follow up to the previous post discussing how to successfully manage your child on pureed diets. This post will address many of the practical questions that are asked along with some “pearls” provided by our parents. We also wanted to provide you with some tasty, nutritious recipes to get you started. Enjoy!

“Where do I start with purees? What kind of blender should I buy? “

Blender Cost General Information
Blendtec® HP3 blender Range from 300.00 refurbished to 700.00 professional series new www.blendtec.com (800) 253-6383-there is patient assistance program available for this.
Vitamix® Wide range of 400-700.00 Inquire about Medical Needs Discount Program which is available to all eligible candidates at (800) 848-2469 or email: household@vitamix.com reference code 07-0036-0011

 

There are also refurbished models that are less expensive

Ninja Kitchen System Plus Average 75.00 (varies per site) Some come with storage/pureed recipes
Oster Immersion Blender 19.00 Per parent report one with a flat blade tends to puree best
Beaba Babycook 95-120.00 (varied per site) Baby food machine and cooks and purees-holds 2 ½ cups at one time
NutriBullet (also a Magic Bullet) Varies 75-120.00 Contains attachments and storage containers

Parents often ask us whether they need to buy the more expensive blenders to make effective purees. Our parents have given us great feedback and have found this not to be true. In fact, the primary inpatient intensive feeding program we often work with typically use the Immersion Blender which is the least expensive option.

 

“A lot of foods on the pureed diet look bland and boring and don’t seem to contain much nutrition. My child needs to gain weight. How can I achieve this? How can I add calories and protein to a pureed diet?”

TYPE OF FOOD           AMOUNT     CALORIES
Liquid fish oil (adds omega-3s) 1 tsp 40
Canned tuna/salmon (adds omega-3s) 2 ounces 60
Chia seeds 1 Tbsp 60
Boiled lentils 1/4 cup 60
Boiled Egg 1 70
Ground Beef or Chicken 1 ounce (3 oz is “palm of hand”) 70
Cooked oatmeal 1/2 cup 75
Avocado 1/4 mashed 80
Greek Yogurt 6 ounces 100-150/ 13 gm protein
Cooked Brown Rice or Quinoa 1/2 cup 110
Almond/Peanut Butter 1 Tbsp 100
Butter 1 Tbsp 100
Raisins 1/4 cup 55 (also great Iron Source)
Sweet potato 1/2 cup 70
Hummus ¼ cup 10

Written by Sharon Wallace, RD, CSP, LDN

Interdisciplinary Team

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Hello readers!

Today, I wanted to take the opportunity to define a big word for everyone! Interdisciplinary. Big long and kinda intimidating! Our great google search engine found this for me as a definition: “a team a group of health care professionals from diverse fields who work in a coordinated fashion toward a common goal for the patient.

Why is this important?

You may also hear the word, “multidisciplinary” – also a very long and kinda intimidating word. But it’s meaning is very different. That same lovely search engine helped to also define this big ‘ole word: “a group of health care workers who are members of different disciplines, each providing specific services to the patient.”

When you come to see the UNC Feeding Team, you will see three different disciplines who work together to provide a common goal to our patients…in other words…we do not work in a vacuum. We truly use the expertise each provider brings to the table to formulate a plan together.

What does this look like in practice? From the medical provider perspective, I will share an example.

Patient A has been seeing our team for 6 weeks. I have started the patient on a reflux medication and our dietitian has started him on a formula that is far easier to digest than previous. All three disciplines gather in the room for a follow up with the patient. A’s parent reports that he is no longer vomiting and is stooling regularly, at least twice daily. He has taken more volume of food at each sitting since adding in more purees (see previous post) but has really not expanded his diet to accept a greater variety of foods and flavors.

The speech therapist then moves forward with feeding the patient for her portion of the visit. Following her therapy session, she comes to both myself and the dietitian and says, “He did a great job opening his mouth, he was not exhibiting any obvious symptoms of reflux and did not gag. However, he was not interested in the food. He did not seem hungry.”

We then have a discussion and decide together to start the patient on a medication for appetite stimulation and recommend adding a high calorie additive (butter and/or cream if the child is able to tolerate dairy) to enhance flavors of puree. I prescribed the medication, the dietitian makes recommendations for the additives and the speech pathologist recommends behavioral strategies to combat any potential refusal to eat.

This example helps to illustrate our team approach. We do not go into patient rooms individually and offer suggestions only specific to our expertise. We pull on the vast knowledge of our colleagues who, together with our knowledge, can provide true best outcomes for our feeding kids.

The UNC Feeding Team is just that, a team…and if you want to get technical…call us interdisciplinary…

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