Appendix 3 - Paediatric complex needs and dysphagia speech and language therapy (SLT)

Paediatric complex needs and dysphagia speech and language therapy (SLT) Red flags for feeding, recommended positioning.

To be clear, the paediatric dysphagia service (PDS) are speech and language therapists who specialise in feeding (over communication) – other SLTs focus on communication and not feeding.  So they are the same team with different specialisms.

Background

Feeding difficulties are common in babies with DS, therefore it is essential that mothers are provided with advice and support regardless of the method of feeding. Infants with DS are at increased risk of having hypotonia, which can impact on feeding tolerance. Other factors which can impact on feeding include heart, reflux and respiratory problems, all of which can delay the progression to full oral feeding. It is important that a speech and language therapist considers the following factors during assessment:

• Gestational birth age, i.e. if the baby has been born premature, then they will have increased risk of a delay in developing competent oral feeding skills

• Assessment of early oral reflexes, i.e. rooting reflex, gag, bite reflex and suck -swallow reflex - with a clear evaluation of oral secretion management. For sucking, assessment of the sequential nature of the patterns observed, and the type of suck pattern, e.g. disorganized, dysfunctional, etc., need to be evaluated

• Intra oral pressure

• Muscle tone

• Infant tolerance of different positions for feeding

• Infant responsiveness to carer's communication, and overall responsiveness to daily care activities 

• Physiological stability during NGT feeds, and /or oral feeds

• Behavioural organization during feeding

Contact details:

Paediatric Dysphagia Service, Westgate House, Edgware Community Hospital, Burnt Oak Broadway, HA8 0AD.   Tel 0208 732 6913

In Barnet Neonatal unit (NNU, Starlight) – the SLT/dysphagia team can be contacted via NNU 02082165160. Many babies with Down Syndrome will be seen by a specialist feeding therapist whilst in hospital, who then lets local community services know about the assessment and plans.

Letter for professionals and parents:

Within the Down Syndrome population there is an increased likelihood of childhood difficulties with eating, drinking and swallowing, in particular oral-motor difficulties and sensory challenges are common. Co-morbid health conditions can further increase the likelihood of feeding difficulties.

Factors to consider:

Structural differences

• Low tone and open posture of lips can cause the anterior loss of fluids/food

• A relatively larger tongue and/or less mobile tongue can cause difficulties manipulating and moving food within the mouth

• Solids can become stuck in a high palate

• Low tone in facial muscles can make it more difficult to effectively chew and/or may mean early fatigue when chewing

• Poor sensory awareness can mean that the child is not fully aware of where food is within mouth or when they have chewed sufficiently to swallow or they may have a hypersensitive gag reflex.

• Infant reflexes last longer than typical- eg thrusting tongue forward and pushing food out of mouth or clamping down when presented with a spoon.

• Jaw and tongue are unstable or uncoordinated causing food to fall to the back of the mouth prompting gagging or choking.

New referrals

As the evidence base suggests that children with Down Syndrome are more likely to have feeding difficulties there is a lower referral criteria threshold for this population.  The following list suggests symptoms that would be of particular concern and would be best explored following a referral.

 The RED FLAGS:

• Coughing or choking with food or fluids

• Back arching, turning away and refusing bottle/breast or when presented with spoon

• Airway/breathing sounding congested or more congested when eating and drinking

• Wet/gurgly voice when eating or drinking

•  Wet sounding cough when eating or drinking

• Changes in facial colour, alertness, breathing when eating and drinking

• Frequent chest infections, particularly if not during season for respiratory illnesses

• Development of respiratory symptoms such as wheezing

• Prolonged feeding times

• Difficulties with texture progression (eg. only accepting thin puree)

• Frequent vomiting when eating and drinking (possibility of reflux should be discussed with the child’s doctor)

Children previously known to the service

The service is currently operating using an episodic care model, when a child is agreed to have a safe management plan in place they will be discharged. Written eating and drinking guidelines will be provided describing the management plan. It is expected that some of these children will need to be referred back to the service for another episode of care if changes to the management plan need to be made (eg. due to skill development).

 All discharge summaries or reports contain the following advice wording to parents/carers and professionals. An immediate referral should be made if concerns are raised of this nature. We are happy to discuss individual cases and if a referral is warranted.

 If any of the signs listed below are observed, please request re-referral to the PDS team and seek medical advice:

The Red Flags

• Coughing or choking with food or fluids

• Airway/breathing sounding congested or more congested when eating and drinking

• Wet/gurgly voice when eating or drinking

• Changes in facial colour, alertness, breathing when eating and drinking

• Frequent chest infections, particularly if not during season for respiratory illnesses

• Development of respiratory symptoms such as wheezing

When children previously known to the service who have dietary modifications in place start at a new educational or care setting a referral will most likely be required to ensure staff at the new setting are able to fully implement dietary modifications. Written eating and drinking guidelines will be provided to the new setting describing the management plan. This will contain in the case of fluids a ‘recipe’ of the correct ratio or fluid to thickener powder and in the case of foods the appropriate testing methods and example foods.

Children with longer term dietary modifications in place, especially those on thickened fluids should be referred for a reassessment before these modifications are ceased.

Other specific information:

Videofluoroscopy - Barnet children can access videofluoroscopy through a referral from the SLT/dysphagia therapist to the radiology department at the Royal Free hospital or through a referral by the Barnet SLT/dysphagia therapist to the SLT/dysphagia team at GOSH.  Generally both services they will accept all SLT referrals where there is a clinical assessment/recommendations.  There can be a waiting time of several months.

Oro-desensitisation programmes can be helpful for tolerance of teeth cleaning/ acceptance of feeding as sometimes used for those non-oral children e.g. neonates/ children with PEGs and to reduce the impact of negative oral experiences during/after a period of invasive medical interventions. This is done through messy play as children need to desensitise through their other senses of touch/sight /smell and the oral acceptance of new foods is the last step to eating.  This is not achieved by the adult putting food /non-food items in the child's mouth.  SLTs do not use these programmes to improve the acceptance of textures/foods or increase the range of foods eaten.  

Therapeutic feeding – high-risk infants like babies with DS: Breast and bottle feeding

Some general advice is as follows to improve feeding and reduce aspiration.  It needs to be given before parents go home from hospital.  Some families will start bottle feeding at home, even if they were exclusively breastfeeding on discharge, before they have seen the health visitor or the SLT/Dysphagia team – so they need to know the safest way to bottle feed in the meantime.

Positioning – Left side elevated side lying (ie head above the level of the rest of the body, not horizontal side-lie position) with pacing by having teat (avoid silicone teat) horizontal and lowering. 

• Maintain alignment during breast feeds keeping tummy to tummy.

• Bottle feeds to be paced and be in a side-lying position to improve protection.

• Give breaks in feeds if breathing sounds get noisier.

• Provide expressed milk in the bottle if possible - potential damage from aspiration (usually silent) is higher if formula fed compared to breastfed, due to the protective nature of breast milk. 

• Don’t increase flow of the teat to increase weight gain

• Use slow-flow teats (not silicone)

• Always check the mode of feeding at every visit.

But it is important to speak to the dysphagia team if concerned and to assess each baby individually.

Our lead for infant assessments is:  Speech and Language Therapist, Paediatric Dysphagia Service, Children’s Outpatients, Edgware Community Hospital, Burnt Oak, HA8 0AD. Tel 0208 732 6913.

Strategies for feeding infants with DS

https://www.brighamandwomens.org/assets/BWH/pediatric-newborn-medicine/pdfs/feeding-cpg---final-06-06-2016.pdf

Given that fluids flow more slowly when a bottle is held horizontally vs vertically, the use of horizontal milk flow may be used to assist the infant to regulate milk flow (reducing bolus size) and assist with suck-swallow-breath coordination.  It is easiest to achieve horizontal milk flow if the infant is positioned in a side-lying position or in a supported upright position for PO feeds (figure 1). Avoid feeding infants in a reclined/ supine position. The transition to standard cradle hold (semi-reclined) position should be made when tolerated by the infant. In addition, given that most infants are held in a side-lying position when breastfeeding, the use of a side-lying position when bottle feeding may assist with transition to breastfeeding.  Supportive positioning can assist in facilitating a flexed position, which is most conducive to effective sucking.

For breastfed infants, support is provided by the mother’s torso and arms. It is suggested that the infant is unwrapped to allow skin to skin contact and assist the infant to latch effectively without extending their neck or stretching their mother’s nipple.

For bottle fed infants, some level of support is provided by the feeder’s torso and arms. However, given that the presence of the bottle obstructs the closeness of the infant and feeder, many infants benefit from being firmly swaddled during bottle feeds. This can make handling easier for the feeder and less stressful for the infant.

External pacing is a strategy that may be used if an infant is having difficulty self-coordinating sucking, swallowing, and breathing.  External pacing involves either/ both:  Tipping the bottle down, to reduce the amount of milk in the nipple and slow milk flow  Removing the nipple from the infant’s mouth, to impose a break in sucking to allow the infant to catch their breath. (Figure 2).  External pacing may be performed on a schedule (e.g. every 3 sucks) or on demand (i.e. cue based).