Mask ventilation in the early management of congenital central hypoventilation syndrome

Ramesh, P.; Boit, Phillipa; Samuels, Martin

doi:10.1136/adc.2008.139931

Cited by 35 publications

(24 citation statements)

References 23 publications

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“…Weakness of respiratory muscles usually evolves in crescendo in adolescence, but at an early stage, mainly if obesity or adenotonsillar enlargement is associated, OSA may appear and a respiratory support may be needed. 17,21 In our series, NIV technique was used in a higher percentage than in most of other reports (26---97%). 3,4,12,14,15 The major advantages of NIV, compared to invasive technique with tracheostomy, include greater patient comfort, simpler application, use and care, reduced incidence of complications 7 and higher survival rates.…”

Section: Discussionmentioning

confidence: 59%

Long-term ventilation in children: Ten years later

Cancelinha

Madureira

Mação

et al. 2015

Revista Portuguesa de Pneumologia (English Edition)

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Section: Discussionmentioning

confidence: 59%

Long-term ventilation in children: Ten years later

Cancelinha

Madureira

Mação

et al. 2015

Revista Portuguesa de Pneumologia (English Edition)

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“…9,23 Nevertheless, there are also reported cases of children successfully decannulated at early age. 22,24 On the basis of our experience, we consider useful to complete the decannulation program before adolescence, due to the multiple factors that could influence, at this age, the good outcome and adherence to treatment.…”

Section: Discussionmentioning

confidence: 99%

Decannulation in children affected by congenital central hypoventilation syndrome: A proposal of an algorithm from two European centers

Paglietti

Porcaro

Sovtić

et al. 2019

Pediatric Pulmonology

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Rationale Long‐life ventilatory assistance is necessary for survival in pediatric patients with congenital central hypoventilation syndrome (CCHS). Invasive mechanical ventilation (IMV) through tracheostomy is the most used method, especially in the first years of life when the central nervous system is maturing. Nevertheless, IMV via tracheostomy is not ideal because tracheostomy in children is associated with impaired speech and language development, also frequent infections of the lower airway tract occur. Objective Only few reports describe the transition from IMV to the noninvasive method, ending with decannulation in CCHS affected patients. We aim to provide our experience regarding decannulation program in CCHS affected children and to describe a proposal of an algorithm concerning transition from invasive to noninvasive ventilation (NIV) in CCHS patients. Methods The study has been conducted retrospectively. Four children from two European centers underwent tracheostomy removal and decannulation, upon request of patients and their families. Results All children were trained to carry out tracheostomy capping before decannulation and underwent endoscopic assessment of upper and lower airway. Subsequently they started training to NIV at mean age of 106.25 months (±40.7 SD). Decannulation occurred 12 months after and no patients needed the reintroduction of tracheal cannula in either short or long term follow up. Conclusions: our study shows that effective liberation from IMV, the transition to NIV and decannulation are possible in CCHS affected children and offers a proposal of an algorithm which can be applied in selected centers.

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“…Much of the impetus to transition to non‐invasive ventilation rests on desire to improve health‐related quality of life. Questionnaire surveys given to parents of children who started with alternative modes of ventilation (for e.g., tracheostomy), then transitioned to mask ventilation stated better quality of life including less suctioning requirements, ease of transport, better sleep pattern, and higher level of confidence in the child . It is important to have an ongoing discussion with the patient and family for consideration of BiPAP transition, at the earliest stage appropriate for the child.…”

Section: Discussionmentioning

confidence: 99%

Congenital central hypoventilation syndrome; Safety of early transition to non-invasive ventilation

2013

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Congenital central hypoventilation syndrome (CCHS) is a rare disorder of autonomic dysregulation, characterized by alveolar hypoventilation especially during sleep. As a result, lifelong ventilatory assistance is necessary in these patients. Many infants and children initially require positive pressure ventilation via tracheostomy for support. Associated complications and psychosocial pressure may prompt early transition to non-invasive ventilation. We present the details of a patient with CCHS who successfully transitioned from tracheostomy to bilevel positive airway pressure ventilation at an early age of 3 years.

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Mask ventilation in the early management of congenital central hypoventilation syndrome

Cited by 35 publications

References 23 publications

Long-term ventilation in children: Ten years later

Long-term ventilation in children: Ten years later

Decannulation in children affected by congenital central hypoventilation syndrome: A proposal of an algorithm from two European centers

Congenital central hypoventilation syndrome; Safety of early transition to non-invasive ventilation

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