Category: Medical

Eosinophilic Esophagitis (EoE)

Although a rare diagnosis, the number of children diagnosed with Eosinophilic Esophagitis (EoE) is increasing. In the United States, approximately 10-50 children out of every 10,000 are being diagnosed per year. Because there are cases when difficulty eating is the first sign of EoE, we asked our colleague and expert in EoE, Dr. Sabina Mir, to write the following information for our patients.

What is Eosiniophilic Esophagitis (EoE)? Eosinophilic (e-o-sin-o-filek ) (e-so-fa-gitis) is a chronic allergic inflammatory condition of the esophagus. The esophagus is the food pipe that connects the mouth to the stomach. In EoE, there is a build up of too many white blood cells, called eosinophils, in the esophagus.

What causes EoE? Food allergies are one of the most common causes of EoE. Approximately 50%–80% of children with EoE have other allergic diseases such as eczema, asthma and/or allergic rhinitis. EoE can also run in families.

What are the symptoms of EoE? The symptoms of EoE are non-specific and are similar to many other conditions (abdominal pain, vomiting, heartburn, feeding refusal). Feeding difficulties are not uncommon in kids eventually diagnosed with EoE. Infants/toddlers may present as slow feeders, may limit volumes of foods and liquids and/or may have difficulty transitioning from liquids to solid foods. Older children may avoid foods with harder textures (beef, bread) and prefer softer foods. These children may also chew for long periods of time and be labeled as “slow eaters”. Adolescents may experience food impactions where food gets stuck in the esophagus.

How is EoE diagnosed? EoE cannot be diagnosed definitely without an upper endoscopy, performed by a gastroenterologist. There are certain clues to the diagnosis that the gastroenterologist can see with his/her eyes during the procedure (rings, furrows, narrowing of the esophagus). However, the diagnosis is made based on a specific number of white blood cells (eosinophils) seen only under a microscope. Biopsies (small pieces of tissue) are taken at the time of the upper endoscopy and reviewed by a pathologist.

What are the treatments for EoE? There are two main forms of treatment, medical and dietary. Sometimes a combination of both may be required.

Medical: Topical oral steroids, available in two forms, are delivered directly to the esophagus, where the irritation and inflammation exists:

  • liquid budesonide (usually made to be inhaled into the lungs for asthmatics) where a “slurry” is made with Splenda to be swallowed
  • fluticasone inhaler where the released vapor is swallowed instead of inhaled

* Both types of steroids require strict oral care following the treatment to prevent yeast from developing in the mouth and esophagus*

Dietary: Since food allergies are thought to be the main factor driving the inflammation in EoE, food elimination is an important part of treatment. Diet therapy can be a combination of 1, 2, 4 or more food group elimination. The most common triggering foods include dairy, wheat, eggs, soy, peanuts, tree nuts, fish, shellfish, beef and corn.

Repeating an upper endoscopy is often necessary to monitor the effectiveness of the treatment. The usual recommended time frame between scopes is between 8-12 weeks until remission of the disease is reached (less than 15 eosinophils per high powered field under the microscope). At that time, yearly endoscopies are often recommended unless a new symptoms or change in treatment occurs.

Age appropriate treatment with a multidisciplinary team consisting of a gastroenterologist, an allergist, a dietician and a speech therapist is critical in developing the best treatment plan for children with EoE.

Dr. Sabina Mir is an Assistant Professor of Pediatrics at the University of North Carolina at Chapel Hill’s School of Medicine. She is the Director of Endoscopy and Expert in Eosinophilic Esophagitis within the Division of Pediatric Gastroenterology at the NC Children’s Hospital. We are deeply appreciative of all of the outstanding education she provides for our team and the time she took to write this informative piece for our patients.

Medically Complex Patients

A large majority of the patients we see as a part of the interdisciplinary feeding team here at UNC have very complex medical diagnoses. This fact makes it very difficult to have standards of care as far as how we treat our patients. Often, in medicine, we have protocols and clinical pathways that guide our care for “types” of patients. These care plans are fantastic when dealing with more typical presentations of problems such as Reflux (not Reflux Disease), Constipation and even Abdominal Pain or Eosinophilic Esophagitis. Large samples of such patients are taken and evaluated as to which treatments produce results, how long such treatments typically take and pathways of which direction to take if a certain treatment is not proving beneficial.

In the case of a large percentage of the population we see within the feeding clinic, there are no other patients with their exact diagnosis or combination of diagnoses. In the medical world we would call these patients and “n” of one. With patients who are unique only to themselves, a standard protocol or pathway cannot be established or followed. This can prove very stressful and confusing to parents and caregivers alike.

A benefit you will receive from visiting our interdisciplinary feeding team is a “meeting of the minds,” so to speak. Three different disciplines will take a detailed feeding history specific to your child and develop the best plan of care to fit your child’s individual needs. Whether your child has eaten by mouth from birth or has never eaten by mouth makes no difference in our ability to develop a plan of care. A large majority of our patients require some type of supplemental feeding tube to consume all of the necessary calories for good growth.

We care for patients who have a range of feeding difficulties from very mild to extremely complex. Eating by mouth is something that is easy to take for granted and also to overlook as a possibility in many patient populations. The one thing that all of our patients have in common is the desire to eat by mouth, even if only in small tastes, which we promote as long as safety has been established. If the ability to eat by mouth enhances the patient’s quality of life, we work hard to assist the patient in doing so.

Medically complex patients are always a bit of a puzzle. Establishing best treatment plans for feeding these patients vary from patient to patient. It often takes a lot of time and patience when trying medications and formulas and evaluating their effectiveness. It also takes a lot of love for these special kids and we have that for sure! Please contact us with any specific questions if you have them or come see us.

GI Motility Management

As promised, this is a follow up BLOG post from our last BLOG, “GI Motility“.  It is always nice to define our medical terms for our patients, but even better to offer explanation for ways that we can help manage this type of GI dysfunction.

For motility disorders, we use medical and nutritional treatments, combined together, to enhance movement through the GI tract to aid in decreasing the likelihood of reflux as well as increasing emptying of the stomach and the intestines. We like food to go into the mouth, down the esophagus through the lower esophageal sphincter and into the stomach, empty from the stomach and flow through the small and large intestines, and out of the body with as few “hiccups” as possible.  We often explain this to our patients as a part of achieving “gut comfort,” something we aim for before initiating any type of behavioral feeding therapy. We don’t believe in training kids to eat who we don’t believe feel well.

Part of feeling well is actually not feeling your food flow through your GI tract! Digestion should be a bodily activity that easily flows and occurs without pain. Any disruption to this process, whether in the form of acid splashing in the esophagus or stool settling into an oversized colon refusing to come out except with extreme force and pain, decreases a child’s desire to go through the process of eating again. Do you blame them?

Our superb pediatric dietitians use specialized formulas that are made up of broken down proteins (primarily milk proteins) that are easier for our patients to digest. When our patients consume these formulas, their GI tracts have less work to do, experience less likelihood of difficulties with constipation or reflux and often have decreased irritation and inflammation throughout their GI systems. Simply put, these formulas empty better and are absorbed more quickly, thus enabling increased comfort and a better environment for optimal nutrition. This is a win-win for an impaired, angry or plain ole’ tired GI tract.  (Corkins M, ed. 2011).

We always aim to treat our patients first with formula change. However, sometimes, medical management is necessary. We often use medications, such as erythromycin or bethanechol. Both of these medications assist the GI tract in performing its wavelike activity (peristalsis) via different mechanisms. We see these medications decrease reflux symptoms, increase ability to tolerate tube feedings without vomiting or retching, increase frequency and consistency of bowel movements and increase amount of formula a child is able to consume in one sitting.  We choose which medication we recommended based on many factors, specific to each individual patient.

There are other medications we use less commonly to assist the GI tract in its motility, such as metoclopramide (Reglan) or cyproheptadine (Periactin). We are very judicious in recommending any medication and do so with a risk/benefit balance each and every time. Some medications are not appropriate for some patients yet provide excellent outcomes for others. Because we treat patients with a wide range of impairment in their GI motility, each plan for each little patient is different.

In summary, when treating GI motility, it takes both the dietitian and the medical provider to provide the best case scenario for the easiest flow and comfort during the digestive process to allow for optimal absorption of nutrients for the best growth outcomes.

Corkins M, ed. Dietary Sources in Pediatric Nutrition Support Handbook. ASPEN; 2011.

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!

 

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.

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.

The Business of Number Two

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“The Business of Number Two”

I always joke with my patients and their parents about poop. I mean, after all, it is funny that I talk about poop for a living. Usually, when I tell my patients poop jokes, it lightens the mood and everyone relaxes…which is in and of itself, part of my medical treatment plan.

Most people come to their first feeding team appointment knowing little about recommendations that will be made. They are often tired from repeated referrals and treatment plans that have not worked. They are frustrated, they are tired, they are at their “wits end”. So, humor is one tactic I use to break through the tension, to lighten the mood and to let my patients and their parents let go a bit.

In reality, pooping is a main part of successful eating. Most people look at me a bit cross-eyed when I start asking the details about their “business”. How often, what does it look like (usually compared to some type of food), how big is it, does it hurt to push it out, does your stomach hurt before or after, do you poop at night, do you know when you need to poop? Why all these questions?

Constipation is a common problem in children, occurring in approximately 3% of children worldwide. In up to 40% of these children, constipation starts in the first year of life. Constipation is not just “hard poop”, but can manifest itself by infrequent and/or painful stooling, leaking of stool that can be confused with diarrhea (encopresis), abdominal pain, difficulty eating, vomiting and bloating. Imagine dealing with any of these symptoms and how that might impact one’s desire to eat.

Getting a very detailed history of each patient’s stooling history from birth is paramount to our success as a feeding team. Of course, we want to rule out more organic causes of constipation, such as Hirschprung’s disease, celiac disease and hypothyroidism, to name a few. We also will often use radiology, not because we need it to diagnose constipation, but often it is helpful in educating families objectively. If we get an xray that shows a large volume of stool throughout the intestines, it is often easier to justify the need for a clean out in a patient who may stool every day…though those stools may be hard little “rabbit pellets”.

Most often, constipation is “functional” or something that has occurred over time, without identifiable associated disease process. However, we, as a team, view it as a REAL problem, one that is worth the time and effort to investigate fully in order to allow each patient the best case scenario in GI comfort. We absolutely see a connection between ease and regularity of stooling with each and regularity of eating.

So, when your feeding team visit starts and ends with poop talk, don’t be alarmed. Treating constipation is a large part of what we start with in establishing “gut comfort”.   We have to address and aggressively manage constipation before we can move forward with our team goals. As my colleague says, “We strive to be number one in the business of number two…”