Category: Speech Pathology

Down Syndrome and Difficulty Swallowing

Children with Trisomy 21 or Down Syndrome can be at increased risk for feeding and swallowing problems. This is primarily due to anatomical differences, such as low tone. Low oral muscle tone (weak muscles in the mouth including the lips, cheeks, tongue) can result in weak lip closure, poor suction on the bottle nipple, strong tongue thrust and poor chewing. These problems can be diagnosed and treated with an oral motor assessment and clinical swallow evaluation performed by a speech pathologist.

The most concerning feeding and swallowing issue for children with low tone is aspiration, or the ingestion of food and/or drink into the airway. The act of aspirating typically results in an alerting sensation or a cough response. However, a recent study from the Children’s Hospital of Colorado reported that children with Down Syndrome are at higher risk for silent aspiration, which is when food or drink enter the airway without eliciting a sensation or a cough response. Silent aspiration can only be detected and diagnosed by a test. The two tests that evaluate swallowing are the modified barium swallow study (MBSS) (this might also be called a videofluorscopic swallowing study) or a fiber optic endoscopic evaluation of swallowing test (FEES), either of which can be conducted by a trained speech pathologist. Left untreated, aspiration can result in health problems including pneumonia, chronic cough, low grade fevers, congestion, dependence on supplemental oxygen and poor weight gain.

What does this mean for parents?

  • Not every child with Down’s syndrome has aspiration. However, parents of children with Down’s syndrome should understand that their child has an increased risk for swallowing problems and that sometimes aspiration is silent meaning there are no obvious symptoms when the child is swallowing.
  • Children with low oral motor tone can have difficulty with the mouth skills needed to manipulate a bottle, cup or solid foods.
  • Parents should seek an evaluation from a speech pathologist for feeding and swallowing skill development and get treatment early to prevent long term consequences.

If parents are concerned, they should request a referral from their pediatrician for a feeding and swallowing evaluation from a trained speech pathologist.

Jackson A, Maybee J, Moran M, Worlter-Warmerdam K, Hickey F. Clinical Characteristics of Dysphagia in Children with Down Syndrome. Dysphagia. 12 July 2016 doi: 10.1007/s00455-016-9725-7

Written by Sarah Studley, MS, SLP-CCC, one of our speech pathologist’s on the UNC Pediatric Feeding Team who specializes in pediatric feeding and swallowing intervention. 

 

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.

What is a Modified Barium Swallow Study (MBSS)?

x-ray-310166_1280

 

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

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!

 

When Purees Have a Purpose

You may hear some surprising things when your child comes to the UNC Pediatric Feeding Team clinic. For example, you may hear that we would like your child to return to eating puree textured foods (yes, we are referring to baby foods…but also to homemade high calorie blends that are of the pureed variety). We thought a post explaining this recommendation would be helpful.

Our team will first observe your child eating and drinking foods from home.

Foods we commonly see:

  • chopped foods (cut fruit, cut vegetables, cut granola bars/nutri-grain bars)
  • crunchy snacks (chips, crackers, wafers, cookies, dry cereals)
  • solid foods (hamburgers, French fries, granola bars, mini pizzas, dessert bars)
  • juice, water, milk supplements

Things we observe while your child eats:

  • Volume of food eaten
  • Speed/Rate at which they eat
  • Sophistication of chew and swallow
  • Demeanor/comfort while eating

Using  a combination of key findings from our very detailed history and the expertise of our pediatric speech therapist, we will determine if the food texture given is the most appropriate for your child. This can have a direct impact on how well your child will grow and thrive.  Based on the findings, we may ask that you “back down” to a pureed diet texture in order to assist in overall ease of eating. Your child’s oral motor skills may be delayed and not sufficient for an age appropriate meal of solid foods. Your child also may be underweight and require higher calorie purees/mashed foods or liquids. It is far easier to add in supplemental powders and additives to purees than it is to solid foods.

See below for some frequently asked questions related to this topic:

  1. My child is four years old. Why would they need to have a pureed diet? Eating is actually a much more complex process than people realize. Biting and chewing skills are developing as early as six to twelve months of age. Children do this by accepting new tastes and textures introduced around five to six months of age first with spoon feeding of purees, beginner dissolvable solids and then real solids foods.  As babies move into chewing, they move from sucking in the middle of their mouth to moving foods with their tongue to the side of their mouth with coordinated biting. With time and practice this process becomes easier and easier as more complex foods can be introduced. The transition from sucking to chewing takes a typically developing child a long time to develop. They start around six months and do not achieve fully mature chewing skills until age three.
  2. What can cause this process to get off track? Medical issues such as chronic disease, surgery, prematurity or prolonged hospital stays can interrupt this process. Untreated reflux over time causing  pain or discomfort with eating, which can lead to volume limiting and refusing of foods. We often hear reports of babies and children who hold foods in their cheeks, turn their head to refuse, and cry at meal times. Some children are extremely picky eaters, taking 30, 40 and even 60 minutes to eat a meal. Some of our patients refuse to try any new foods. Our team can quickly identify when the “normal” eating process has been interrupted and when a pureed diet might be necessary to get your child back on track.
  3. How will my child grow and gain weight eating baby foods? Ensuring that your child gets proper nutrition is the primary role of the dietitian on the feeding team. A pureed diet needs to have as much thought as any other diet you would prepare for your child. We work with families to use the best purees and mashed foods possible, which may mean higher calorie store bought purees or homemade purees. Our goal is to assist you in avoiding serving the same flavors repeatedly.  Every day we watch our pediatric patients come back to clinic with stories of improved developmental milestones, improved sleep and overall better temperament as a result of an improved nutritional intake, often beginning in the pureed form.
  4. What are some things I should think about when making a pureed diet? We want to see a variety of tastes and flavors being offered- and foods coming from at least two food groups per meal. For example: breakfast might consist of yogurt and pureed fruit, lunch might consist of a pureed peanut butter and jelly sandwich with fruit, and dinner might consist of pureed spaghetti with meatballs and green beans. Many parents ask us about using store bought baby foods. Baby foods (usually stage 2) often have the texture of a smooth puree and can certainly be used when traveling or “on the run”. Additionally, there are many pureed pouches with a wide variety of flavors that are the perfect smooth texture our feeding kids tolerate best. The “best case scenario” would be to use a combination of baby foods and pouches with homemade purees (this is especially true when using a pureed diet is new and parents are still trying to figure out the best way to make tasty smooth purees). Keep in mind, we are here to help…and enjoy doing it…

Part Two: Tune into part two of our pureed diet blog this month to find out more about comparing blenders to get the job done, healthy but high calorie additions to a pureed diet and some fun recipes!

Written by Sharon Wallace, RD, CSP, LDN