2016 Annual Connect Conference Tween and Teen Respiratory Care Dr. Dan Sheehan

Transcription

1 2016 Annual Connect Conference Tween and Teen Respiratory Care Dr. Dan Sheehan

2 Staying out of the Hospital

3 Inspiring Respiratory Wellness

4 Topics How to ACTIVELY participate in care DMD Respiratory Muscle Weakness What/How/When of Pulmonary Function Tests ( PFTs ) Cough Assist Non-Invasive Ventilation Other ways to stay healthy and well

5 Topics How to ACTIVELY participate in care DMD Respiratory Muscle Weakness What/How/When of Pulmonary Function Tests ( PFTs ) Cough Assist Non-Invasive Ventilation Other ways to stay healthy and well

6 Topics How to ACTIVELY participate in care DMD Respiratory Muscle Weakness What/How/When of Pulmonary Function Tests ( PFTs ) Cough Assist Non-Invasive Ventilation Other ways to stay healthy and well

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8 DMD Respiratory Muscle Weakness Hypoventilation Awake Hypoventilation Asleep Weak Cough Age, years

9 Signs and Symptoms Weak Cough Often without symptoms Persistent chest congestion/rattle;; Throat clearing Hypoventilation Asleep Restless sleep;; Repositioning;; Snoring;; Sweating Morning headaches;; Daytime naps;; Mood changes Change in school performance Hypoventilation Awake Short of breath ;; Anxious;; Soft voice Needs to breathe during short sentences.

10 DMD Respiratory Muscle Weakness Hypoventilation Awake Hypoventilation Asleep Weak Cough Forced Vital Capacity (FVC) Peak Cough Flow Maximal Expiratory Pressure Age, years

11 Forced Vital Capacity

12 GROUP AGE AT LOSS OF AMBULATION (Years) C B 8-11 A Before 8 Humbertclaude V, et al. Motor and respiratory heterogeneity in Duchenne patients: implication for clinical trials. Eur J Paediatr Neurol. 2012

13 Muscular Dystrophy Surveillance Tracking and Research Network Participating sites: Arizona, Colorado, Iowa, Georgia, New York Data Sources: Neuromuscular clinics, hospitals, hospital discharge records, private physicians, birth defect surveillance programs, service sites for children with special needs

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15 Peak Cough Flow Peak Cough Flow falls to below 270 L/min

16 At Home for Respiratory Infections Cough Assist every 4 hours and as needed Finger Pulse Oximeter If oxygen saturation < 95% then Cough Assist

17 DMD Respiratory Muscle Weakness Hypoventilation Awake Forced Vital Capacity (FVC) Sleep Evaluation Body CO2 O2 Hb Saturation Hypoventilation Asleep Weak Cough Age, years

18 Non-Invasive Ventilation: Asleep FVC < 30-50% predicted Sleep Study

19 Many Devices to Deliver BiPAP +

20 Many Noses Many Interfaces

21 Topics How to ACTIVELY participate in care DMD Respiratory Muscle Weakness What/How/When of Pulmonary Function Tests ( PFTs ) Cough Assist Non-Invasive Ventilation Other ways to stay healthy and well

22 Other ways to stay healthy and well Yearly influenza vaccine ( flu shot ) Pneumovax 23 ( pneumonia vaccine ) every 5 years Stretch your breathing and coughing muscles.

23 Emergency Card

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25 Emergency Preparedness ALWAYS Bring your: 1. Own equipment 2. PPMD Emergency Card Call your: 1. Neuromuscular MD 2. Pulmonologist 3. Respiratory Therapist

26 Topics How to ACTIVELY participate in care DMD Respiratory Muscle Weakness What/How/When of Pulmonary Function Tests ( PFTs ) Cough Assist Non-Invasive Ventilation Other ways to stay healthy and well

27 Inspiring Respiratory Wellness