How ENT Factors Affect Speech and Feeding Development in Down Syndrome:
Frequently Asked Questions/Evidence Based Answers
Angela Dadon, MA, CCC-SLP
Speech-Language Pathologist
It’s a privilege working within Eis Laasois as therapist, supervisor and now as Clinical Consultant. During my tenure parents asked questions likely of interest to “Down Syndrome Amongst Us” readers. The answers are guided by best practice/research, are supported by experience and are respectful of families’ needs for specific children – since we do care for and about children, not research subjects, and not diagnoses. Your feedback is welcome.
FAQ: “Why is the tongue hanging out?”
Rest mouth posture in children with DS is often with open jaw, protruding tongue and increased drooling. Structural, functional and medical factors contribute. Cranial-facial features in DS make children identifiable by the ‘way they look’. They may have mild microcephaly, short neck/small throat (affecting voice quality), small mid-face/small flat nose, short, narrow arched palate and small jaws. The tongue, often fissured, is smaller with denser muscle tissue than in the general population, but since the jaw is proportionally even smaller there is relative macroglossia (large tongue) that affects breathing, feeding and speech. They may have tethered oral tissues (TOTs) like tongue ties, which might limit tongue, cheek and/or lip movements. (Note that these tissues ‘stretch’ extremely little or not at all so they will need to be released by a qualified dentist, ENT or oral surgeon if indicated.) They have small low-set ears with narrow ear canals, low muscle tone, weakness and reduced sensory awareness including of mouth posture/drooling. With any/all of these differences, the result can be poor or increased fluid drainage from nose and ears, impacted ear wax, chronic thick nasal congestion, enlarged tonsils/adenoids, teeth clenching/grinding, and inability to breathe effectively through the nose. If a child has a feeding tube in the nose, this will obviously impact nasal breathing, as can reflux. The other viable airway path is through chronic mouth breathing – done with the mouth open. Chronic mouth breathing can involve many other brain-body systems including among others, sleep apnea, attention deficits, altered facial growth patterns, chronic chapped lips, dry mouth, and gut and dental health issues. But we cannot expect children with clogged noses to keep their mouths closed even if they have the sensory and motor skills to maintain closure. (So telling them to close their mouth won’t help.) With open jaw, low tone, and open lips, the tongue will come down and forward and tend to ‘hang outside’ of the mouth. There will be inefficient saliva management (drooling). There may be reverse swallow in children who are mouth breathing; their tongue pushes saliva or food out of the mouth instead of guiding it back. Parents may see this as rhythmic ‘thrusting’ movements and ‘messy eating’.
Options for intervention are also structural, functional and/or medical. There is evidence that palate expansion (an appliance is custom-fitted to child’s mouth with gradual adjustments) facilitates improved growth and shape of the palate with potential positive results for breathing, speech, gland function, dentition and ear health. This is a decision made with an experienced dentist/orthodontist and child’s medical team. Palate expansion is shown to be most effective for function in conjunction with targeted therapies, including speech and oral facial myofunctional therapy, with a certified provider. Assessment and treatment with a practitioner in cranial-sutural work or chiropractic (which will not cure specific ailments) are other possible alternatives to support medical care. Your child with chronic ear fluid may need pressure equalizing tubes (more than once). Consider using a humidifier and/or air filter in your child’s bedroom (with medical OK). Provide adequate hydration. Work with your SLP and OT if your child doesn’t drink enough. From infancy, once the child is medically stable, work on closing his mouth while he’s sleeping, watching for a good tongue seal to the roof of the mouth. Wean from pacifiers and bottles sooner than later. It’s difficult to establish more mature oral skills when children are practicing infantile habits. Your SLP will work on oral skills including jaw grading, lip closure and tongue retraction/mobility – possibly including ‘exercises’ – within the context of speech for speech development and within the context of eating and drinking for feeding/swallowing development. Families sometimes request ‘oral strengthening exercises’ without functional context. Evidence shows that very little strength is needed for speech compared to the maximum force available to those muscles. Structural and functional differences complicate speech intelligibility. Consider AAC (augmentative and alternative communication) as augmentative communication support to facilitate (not instead of) speaking. Improving accuracy and speed of placement/release and coordination of the articulators (jaw, lips, teeth, tongue, palate) with breathing, voicing and resonance are appropriate specific tasks to work on. Your child won’t chew and swallow food better after chewing on a tube if food is not part of the practice protocol. Similarly, improved eating skills will not automatically transfer to better speech because these functions are controlled at different levels of the nervous system. Teach your child how to blow his/her nose. It can be done! and can help towards improving potential for nasal breathing/closed at-rest mouth posture with tongue in.
FAQ: “My child passed the hearing screening. Why are you referring for a hearing test?”
Because of factors above, children with DS are at greater risk for hearing loss. (Between 60%-80% have some degree). Most are conductive losses caused by wax, fluid and/or narrow ear canals and may resolve. Others are sensorineural losses from damage to the inner ear/auditory nerve and are permanent. Hearing aids may be prescribed. The negative impact on general and specifically on speech and language development of even fluctuating hearing loss (child hears poorly with wax/fluid, but hears well when ears are clear), is well-documented. Even when there is no hearing loss in childhood, adolescent/adult-onset hearing losses are possible. These may present as ‘behavior’ (lack of compliance, less socialization, slow response time, etc.) but can be related to hearing loss. If the SLP/teacher suggests that the child seems to not hear well, take that seriously. Maybe your child doesn’t participate well with testing. Go anyway because calling from another room or sneaking up from behind and whispering don’t qualify as hearing tests. Your child pays a high price developmentally if hearing loss goes undiagnosed. A recommended testing schedule: at birth (Universal Newborn Hearing Screening), at 6 months, full audiological at 12 months including impedance (for middle ear function). Annual or more frequent testing is recommended if your child has hearing loss, plus hearing aid ‘check-ups’ (for ‘mapping’ frequencies, and sizing ear molds. Improper fit reduces efficacy.) There is a learning curve for hearing aid use. If your child pulls the hearing aids out it doesn’t mean they aren’t helping her. Audiologists will suggest a schedule of increasing times wearing them until your child accepts them. Audiological testing should occur every two years if your child has no hearing loss.
FAQ: “Why does everything go in his/her mouth?”
There are many reasons for chronic mouthing and as wide a variety of things and ways children mouth (including biting). It’s developmentally appropriate for infants to explore by mouthing, including non-nutritive sucking on a pacifier or finger. This need is for the first few months of life and should not persist throughout childhood. If your baby is medically stable and eating by mouth, wean from pacifiers by 6 months old. The longer you wait after that, the more habituated the behavior and perceived need for it to ‘regulate’ the child will become. Nursing is an individual choice and doesn’t cause detrimental oral habits. Consider weaning from bottles as soon as your child drinks needed fluid amounts safely from a straw or cup (not sippy top). Progressing depends on child’s medical status and swallowing function, which your SLP may recommend a study to determine. Some children reduce random mouthing as their food is upgraded to offer more texture, taste and sensory-satisfying experiences. Your SLP can demonstrate child-specific ways to do this safely, even with ‘selective’ eaters and limited biting and chewing skills. Other factors influencing mouthing can include: teething; dental irritation; lack of other ways to occupy/comfort oneself; fluid/pain in the ears; TMJ disorder; reflux; cranial-sutural restrictions; social/emotional immaturity. These can be addressed medically/therapeutically. We know mouthing increases (not decreases) mouthing, so your child will not self-satisfy or achieve weaning by continuing to mouth or by switching to an implement. When mouthing is ingrained it has to be addressed respectfully as a habit while supporting sensory and motor needs. Start with regular tooth brushing. It’s necessary for health and hygiene and provides ‘treatment’ embedded in daily routines. Begin in infancy to reduce sensory aversions, using a finger brush or sterile gauze (no toothpaste), progressing to soft appropriately mouth-sized brushes. If your older child ‘doesn’t let’, ask your therapists for specific suggestions. With respect to the possible struggle, teeth MUST be brushed.
Bonus FAQ: Can my DS child learn two languages?
Yes! There are likely to be similar delays/deficits in both languages, but there is no evidence of detriment to language development from bilingualism. Go for it!
Angela Dadon is a pediatric Speech-Language Pathologist with over 45 years of experience, 32 of which have been within Eis Laasois. Although no longer treating directly, Eis Laasois has retained her as a SLP Clinical Consultant to therapists and families. Eis Laasois provides this as a service to the community, never billing families. Most of Angela’s appointments will be via Zoom going forward. Priority is given to infants and young children with feeding difficulties but you may ask for a session about other developmental concerns. Consultations are also available for PT and OT concerns. You may call Eis Laasois at 718-303-9400 x445 to set up an appointment.