Author: Kristen Brackett

Speech Therapy Acute

Finding Support when you have a child with a feeding problem

 

Feeding difficulty in children is surprisingly common. Research studies tell us that it can occur in 25% of children with typical development and up to 80% of children with developmental delay. (Manikam R1, Perman JA., 2000)  Yet, despite this fact, many parents and caregivers feel isolated and alone when dealing with their child who has a feeding problem.

How do you know if your child has a feeding problem? Check out this  post we did on what a feeding problem can look like.

https://uncfeedingteam.web.unc.edu/2016/06/17/how-do-i-know-my-child-has-a-feeding-or-swallowing-problem/

We often hear from our families and caregivers that having a child with a feeding problem is very stressful for the entire family and they feel isolated and alone. These are some of the things we often hear:

  • Feeling frustrated and sad that your child struggles with feeding.
  • Social activities with other children and play groups are difficult because your child won’t eat what the rest of the kids are having.
  • Going out to eat is impossible because there is nothing on the menu that your child will eat.
  • Fear that your child will experience gagging and vomiting when eating.
  • Caregivers making separate meals -one meal for the family and a separate meal for your child with feeding difficulty.
  • Resorting to fast food for many meals.
  • Feeling pressure from other family members who don’t understand what it’s like to have a child who won’t eat.
  • Feeling afraid that your child will lose weight.
  • Feeling guilty because a parent is supposed to be able to feed their child.
  • Feeling like every one else’s child eats and yours is the only one that doesn’t.
  • Feeling overwhelmed by the cost of feeding therapy or special formula or food needed for your child.

All of these statements and feeling are very real experiences for parents with children who struggle with eating and swallowing. We would like parents and caregivers to know that you are not alone and there is help and support!

How to get help!

  • Feeding Matters: www.feedingmatters.com . This is a parent run support group for families of children with feeding difficulty. You can even request a peer mentor to have someone to talk with.
  • The Feeding Flock: https://feedingflock.web.unc.edu . This is a research team dedicated to partnering with families to nurture children with feeding difficulties. Families are invited to join the face book group.
  • Pediatric dysphagia: babies with swallowing/feeding difficulties. This is an active  face book group for parents of children with swallowing/feeding difficulty.
  • Feeding Tube Awareness : http://www.feedingtubeawareness.org was founded in 2010 to support parents of children who are tube-fed, while raising positive awareness of tube feeding as a lifesaving medical intervention.
  • Talk with your feeding therapist about connecting you with other families with similar experiences.
  • Talk with your feeding therapist or family doctor about recommending a family psychologist that can help with the stress and difficulty of caring for a child with feeding and swallowing difficulty.

What to Expect in Feeding Therapy?

What to Expect in Feeding Therapy?baby-1109331_640

For our Feeding Team Kids: What does feeding therapy mean and what should  a parent expect

Many of our feeding team patients benefit from out-patient feeding therapy to work on improving oral motor skills, swallowing, and feeding skills such as acceptance of age appropriate size portions and a variety of foods from all of the food groups. Some families prefer to see a local therapist if the distance to UNC or our Raleigh based clinic is too far. However, if Raleigh or Chapel Hill is a close option, your feeding team speech pathologist or another UNC therapist may provide therapy.  We provide feeding therapy using oral motor therapy to improve oral skills and behavioral therapy to improve feeding. We typically recommend  2 sessions per months although some children benefit from weekly therapy while others do well with once per month.

Bring Food!

The first thing to expect is that your child will be fed during feeding therapy.  Therefore, parents should plan on bringing food to each therapy session.  In order to improve feeding behavior and skill, the child must practice eating and the parent must practice feeding.  In the same way that a runner does not become a better runner by doing leg exercises alone, rather they must actually run to become a better runner. The way a child moves their mouth can directly impact what food they accept and how long meals last.

During the feeding session, the therapist may target a number of different feeding skills such as :

  • oral motor skills for bottle or cup drinking, for eating food off of a spoon or chewing
  • swallowing strategies to reduce aspiration or choking.
  • feeding techniques to improve meal time behavior, acceptance of foods and liquids, and efficiency of eating
  • positioning for feeding
  • picking appropriate utensils including bottles/nipples, cups, and spoons.
  • improving tolerance of textures.
  • oral motor stretching or strengthening.

The Benefit of Practice

The therapist will recommend a feeding plan for home and practice with specific feeding techniques as part of a home therapy program. any new skill needs practice , this is so your child can learn more quickly.

Parental Involvement

The second thing to expect in feeding therapy is that you will be involved. Our job is to help  you learn to successfully feed your child. It doesn’t matter if the therapist can feed your child, what is important is that you, can feed your child and use the strategies used in therapy for home feeding practice. Once a week feeding with a therapist is not enough to effectively address feeding issues, home carry over and parental involvement is the key to success and change. The therapist will coach parents to correctly implement the strategies identified in therapy in order for parents to confidently implement the strategies at on home.

Behavioral Feeding Techniques

The third thing to expect in a therapy session is the use of books, singing, cheering, toys, games and electronics. A child is in feeding therapy because feeding has been a struggle.  If needed, therapists will use toys and games to provide distraction, reward, and a little bit of fun into a difficult and sometimes stressful task. Therapists know that children learn through play and will incorporate the use of a variety of these techniques in feeding therapy. Feeding therapy is not always easy and not always fun, it is hard work, but we do believe in positive reinforcement, praise, and play.  This reinforcement is highly encouraged for parents to use at home as well.

Therapy Plans are unique to the child

The fourth thing to expect in feeding therapy is your child’s feeding therapy may be different from a parent’s expectations or the therapy that a friend’s child is getting. Every therapy session and feeding plan is based on the child’s specific needs and no two therapy plans are alike.  If the therapist believes that a child will benefit from a sensory based therapeutic approach, these will be incorporated into therapy or the child may be referred to an occupational therapist.  If the therapist believes that motor/body therapy is necessary, the child might be referred to a physical therapist. If significant behavior or anxiety is an issue, the therapist may refer the child to a behavioral psychologist. In some cases, a child may need speech, occupational, physical and behavior therapy.  Some of our feeding team patients attend intensive feeding programs. However, in many cases, speech therapy is enough.  Your therapist will work with you and your child to determine what is best plan for your child’s therapy.

We are here for you!

The most important thing to know about feeding therapy is that your therapist is a resource for you and your family.  Your therapist will educate, support, and cheer your family on in any way possible to help your child overcome feeding obstacles and thrive.

Difficulty Swallowing

cropped-cropped-Feedingkidblog.jpgEvery Oral-Motor/Feeding evaluation includes assessment of your child’s swallowing function. This means the speech therapist will look closely at your child’s ability to swallow food and liquid safely. Meaning looking to see if is going down the right tube. The therapist will ask questions about your child’s swallowing and also watch your child eat and drink. The therapist will look for signs of difficulty in the process of drinking and eating.

 

Signs of difficulty swallowing might include:

  • coughing and choking with eating or drinking
  • increased congestion during and after meals
  • changes in vocal quality such as a wet sounding voice
  • eye tearing while swallowing
  • gulping or having a loud swallow
  • feeling like food is getting stuck in the throat
  • history of pulmonary symptoms such as pneumonia,bronchitis, or asthma like symptoms
  • low grade fevers without illness

*It is important to understand that some of these symptoms can be caused by issues other than swallowing difficulty. This is why it is important for a trained speech /feeding therapist to do the evaluation.

You might hear the speech therapist or feeding team member say the child has signs of swallowing difficulty or may be at risk for food or liquid to go the wrong way (into the airway). When food or liquid goes into the airway or trachea it is called aspiration. It is important to identify aspiration because it can be harmful to your child’s lungs.

The therapist may recommend further testing for your child’s swallowing such as a Modified Barium Swallow Study (MBSS) or Fiberoptic Endoscopic Evaluation of Swallowing (FEES) to fully evaluate your child’s swallowing function. These will be explained in the next post.

Final Thoughts:

  • If you are concerned with your child’s ability to swallow, tell your pediatrician and ask for a referral to a speech pathologist who has training in feeding and swallowing.
  • When preparing for the evaluation, bring foods and drinks that your child eats at home including preferred cups and utensils.
  • Take a short video of your child eating and drinking to capture your concerns and bring this to the evaluation.
  • Bring your child hungry to the evaluation so that the therapist or team can watch your child eat.
  • Ask questions during the evaluation and if you do not understand something that is mentioned or recommended , please ask! We are here to help your child eat/feed better!

 

How Do I Know if My Child Has a Feeding Problem?

How Do I Know My Child Has a Feeding or Swallowing Problem?   

Feeding problems can come in all shapes and sizes and can affect a child at any age from the premature infant to the young adult. Some caregivers aren’t sure if their child has a problem but feel that feeding their child is difficult or stressful.This can be a very frustrating and lonely problem to have but there are many things that can help your child be a successful feeder!

What Does a Feeding or Swallowing Problem Look Like?  

  • Difficulty with bottle or breast feeding. This could be poor latch to the nipple, difficulty maintaining latch, or frequent pulling off the nipple.
  • Crying, irritability or seeming uncomfortable after a feeding.
  • Infant who eats better while asleep.
  • Difficulty controlling liquid or food with spillage out of the mouth while eating.
  • Food or liquid coming out the nose while eating.
  • Coughing or choking with liquids or solids.
  • Swallowing food whole instead of chewing.
  • Holding food in the cheeks or spitting out food instead of chewing and swallowing the bite.
  • Extreme picky eating, eating only carbs, or refusing entire food groups such as fruits, vegetables, and proteins.
  • Eating the same foods every day and refusing to try new foods (having to make your child a different meal from the family).
  • Gagging or vomiting during or after meals.
  • Not eating enough to gain weight and thrive.
  • Grazing or eating only small amounts frequently.
  • Difficulty moving from bottle or breast feeding to cup drinking.
  • Need for a high calorie supplement or tube feeding.
  • Difficulty swallowing which might appear as choking, coughing or frequent respiratory infections.
  • Allergies or intolerance to foods.
  • Not eating due to complaints of stomach ache or pain.
  • Poor appetite, never hungry, skips meals.

 

What Can I Do To Help My Child?  

Start by talking with your pediatrician or primary care provider. They can look at your child’s weight and growth and help you determine if your child would benefit from seeing a feeding team or feeding specialist. Talk with your provider about your concerns. It may be helpful to bring a food journal of what your child is eating and drinking over 3 days. This may help identify problems and illustrate your concerns.

 

Trust Your Instincts- many of our parents tell us they had concerns long before they were referred. if you are concerned about your child’s eating and/or growth, ask your doctor to refer your child for a feeding and swallowing evaluation. Most children are best served by starting with a feeding team but if you do not have a team near you, there are many professionals that help children with different types of feeding problems including:   

  • multidisciplinary feeding team (usually found in a children’s hospital)
  • a speech pathologist, occupational therapist, and in some cases physical therapist
  • a developmental pediatrician, gastroenterologist or nurse practitioner
  • registered dietitian
  • psychologist

 

If you are concerned about your child, you will never regret having an evaluation, even if the clinician or team tells you everything is fine.

 

Getting Help

 

There are many things that can help your child be a successful feeder! This might involve medical and nutritional management, testing in some cases, and feeding therapy.

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…”

 

Expectations for Your First Visit

As a team, we thought it would be helpful to outline what you can expect for your first visit with the UNC Feeding Team.

First things first: parking at the NC Children’s Hospital takes a lot of patience and time.  Please prepare for both, by leaving your house 30 minutes earlier than you would typically to come to Chapel Hill. Please park in the visitor’s deck and know that you will walk across a sky bridge to the front of the Children’s Hospital.  You will then ask whomever you first see to direct you to the Outpatient Specialty Clinics on the ground floor.  You will then receive a ticket for a number, you will wait until that number is called, and you will then be checked in for your appointment.

You will then be directed to a waiting room. The waiting room has sand tables for kids, televisions and magazines.

You should wait about 15 minutes to come back to the clinic to get checked in by our nursing staff.  This is our goal.  We appreciate your time very much and will do our very best to run on time and to give you the courtesy of a “check in” by our nursing staff if we are running late.

In the event we are running behind, some parents have found it helpful to bring along some of their child’s favorite toys or travel activities.

Once checked in, the nurse will take your child to be weighed and measured in a small “check in” area in the front of our specialty clinics. One this task is completed, you will be taken into an exam room.  Your provider will then be notified of your readiness to be seen.

This first visit will take approximately two hours.  Please come prepared for this duration.  It is imperative that you bring food to this visit, as we are a feeding team, with the goal of assisting you and your child in a better way of eating and enjoying mealtimes together which we cannot do without watching your child eat.  We ask that you bring a food your child prefers, one he or she does not prefer and one that you would like he or she to eat.  We do have a microwave, but this is not in the exam room and takes extra time to prepare.  Foods that do not have to be warmed are best.  Please also bring spoons, cups, bottles and nipples – anything you use to feed your child.  We do have a variety of different supportive seats (highchairs) for your use.

You will meet with all three disciplines, including pediatric gastroenterology, pediatric speech/language pathology and pediatric nutrition.  Because there are three disciplines and we are a teaching hospital, the small rooms can become a bit cramped.  We try our best to accommodate for this by rotating time spent by each discipline in each room.  Each provider gathers information necessary to complete a holistic feeding history for each individual child.  We will ask questions, beginning with prenatal history, extending to the current day of the visit.  All of the information is important in building our plan of care as a team.

You can expect that we will discuss medical management.  We are a medical-behavioral program.  We believe in treating underlying GI issues and ruling out GI disorders before moving on to teaching children to eat.  We use medications and formulas to prepare the GI tract to be the most comfortable and prepared to receive and absorb nutrients for proper growth and development.

Because each patient is different, each plan of care is different.  Your child may have lab work done on the first visit. Your child may have an abdominal x-ray done on the first visit.  You may be asked to start your child on a new medication to treat reflux or constipation, two of our most common medical ailments in children with feeding difficulties.  You may be asked to switch formulas and feeding schedules through your child’s gastrostomy tube.  We may talk with you about additional procedures or referrals.

The first visit can be overwhelming, as there is a lot of information shared and interpreted, with new plans of care initiated.  We welcome your questions during the visit and following.  We will provide you with direct contact to our nurses and schedulers, who can readily reach us and allow us to communicate with you regarding any questions you may have.

Our follow up visits are typically about 4-8 weeks out with frequency determined by severity of feeding problem.