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Chewing and Swallowing Training Program in Coffin-Lowry Syndrome

Chewing and Swallowing Training Program in Coffin-Lowry Syndrome: A Case Report

Status
Completed
Phases
NA
Study type
Interventional
Source
ClinicalTrials.gov
Registry ID
NCT04199546
Enrollment
1
Registered
2019-12-16
Start date
2019-12-12
Completion date
2020-06-19
Last updated
2020-07-01

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Chewing Problem, Swallowing Disorder

Brief summary

This study will report the chewing and swallowing disorders of a Coffin-Lowry Syndrome (CLS) patient, and effects of chewing and swallowing training on chewing and swallowing function.

Detailed description

Patients with CLS suffer from spinal deformities, nonconvulsive status epilepticus, obstructive sleeep apnea syndrome, pneumonia, stimulus-induced myoclonus, cases of falls, mechanical ventilation, restrictive lung disease. It was also reported that patients with CLS had problems with eating and feeding functions. However there is no study investigating chewing and swallowing functions of this patient population. Therefore, the investigators have three main purposes: 1. To chewing and swallowing function in a boy with CLS diagnosis who was referred due to coughing during eating, long-lasting wheezing, sputum and inability to intake solid food 2. To investigate the effects of two months of chewing and swallowing training program 3. To present long term follow-up effects on chewing and swallowing function.

Interventions

OTHERChewing and swallowing rehabilitation

A home based chewing and swallowing training program (CST) will be applied by an experienced physical therapist. The Functional Chewing Training will be used to improve chewing function which has five steps including positioning the child and food, sensory stimulation, chewing training and adjustment of food consistency to improve chewing function. To support hyolaryngeal elevation, laryngeal mobilization will be performed. Hyolaryngeal mobilization will be performed by moving hyolaryngeal complex in right, left and up directions manually.

Sponsors

Hacettepe University
Lead SponsorOTHER

Study design

Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
TREATMENT
Masking
NONE

Eligibility

Sex/Gender
MALE
Age
3 Years to 3 Years
Healthy volunteers
No

Inclusion criteria

* Having a diagnosis of CLS * Having a history of coughing during eating, long-lasting wheezing, sputum * Inability to intake solid food.

Exclusion criteria

\- No history of coughing during eating, long-lasting wheezing, sputum

Design outcomes

Primary

MeasureTime frameDescription
Instrumental swallowing evaluation6 monthsVideofluoroscopic Swallowing Evaluation (VFSE) will be performed. The swallowing physiology will be evaluated by using 3 ml of liquid and pudding barium during the VFSE. The Penetration and Aspiration Scale (PAS) will be used to determine penetration and aspiration severity, which is scored between 1 to 8. The score of PAS 1 means 'No aspiration', scores from 2 to 5 indicate 'Penetration', and scores from 6 to 8 indicate 'Aspiration'. High score indicates bad situation.

Secondary

MeasureTime frameDescription
Swallowing screening6 monthsThe Pediatric Eating Assessment Tool (PEDI-EAT-10) instrument which has 10 questions to evaluate dysphagia symptom severity in children will be completed. Total scoring ranges from 0 to 40. Higher scores mean worse outcome.
Chewing evaluation6 monthsKaraduman Chewing Performance Scale will be used to define chewing performance level. It is a 5 point scale between 0 to 4. Level 0 means 'Normal chewing function', and level 4 means 'No biting and chewing'. Higher scores mean worse chewing function.

Countries

Turkey (Türkiye)

Outcome results

None listed

Source: ClinicalTrials.gov · Data processed: Feb 4, 2026