Speech Pathology & Sleep/Respiratory Checks – Monash Hospital & RCH

We’ve been to the Speech Pathology clinic at RCH a few times, they provide assessment, treatment and consultations for children with communication and feeding or swallowing difficulties. Due to Chiara’s diagnosis, there has bee a lot of concern regarding her breathing and ability to swallow foods safely. And due to the area of her brain that has been effected, choking comes as a high risk..

Here’s a snippet from the long report:

Chiara attended an initial assessment session (11.11.13) and a review session (20.01.14) within the EDS clinic. Chiara was smiley and attentive throughout the assessment. She cooed and showed some early stages of babble, provided lovely eye contact, and was very happy to be handled and interacted nicely with all adults she came into contact.

Throughout both consultations Chiara’s posture was observed to frequently change to an extensor spasm. This positioning continued regardless of whether Chiara was at rest/sitting on dad’s knee or feeding. Chiara was also observed to have apparent tone changes within her tongue causing constant writhing movements. She also drooled excessively during the review session and her father reported Chiara can go through five bibs in a day.

Chiara demonstrated obstructed breathing / nasal turbulence from time to time during the sessions. Mauro reported that this had been occurring more frequently at home and during her sleep.

Approximately three times (not whilst feeding), Chiara was observed to hold her breath for 3-5 seconds, she would then cough and have subsequent eye watering in both eyes and change colour to red. This would self-resolve and Chiara would recover quickly.

Chiara’s expressive and receptive language skills appeared delayed. Chiara presents with functional feeding skills despite some oral stage difficulties of her swallowing. Her oral stage issues are exemplified by tone changes in her tongue causing frequent thrusting and writhing whilst feeding and at rest.

Chiara is not, currently, showing signs of aspiration or laryngeal penetration of her feeds. She is, however, demonstrating significant difficulties managing her oral secretions which may be contributing to increasingly frequent episodes of breath-holding and coughing. Her frequent extensor posturing may also increase Chiara’s risk of aspirating – particularly during feeding. It is important Chiara is in a supportive, flexed position to minimise these occurrences. Chiara is also showing signs of obstructed breathing which is currently being managed through position changes whilst sleeping, though should be investigated further. Chiara appears mildly delayed with her language reception and expression.

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