Parent information

  • From Monday 19 July, Philips Respironics will be posting notices about their ventilator recallacross Australian news outlets.

    The Royal Children's Hospital (RCH) has recently contacted our families affected by this recall. Please be assured that no further action is required – all affected Philips machines that were provided by the RCH have been registered on the recall list and the Respiratory team will make direct contact for any further updates or actions as required.

    More advice and information can be found below.

    TGA product defect correction: Philips ventilators and CPAP machines

    The Therapeutic Goods Administration has announcedthat a number of Philips ventilators and CPAP machines have a defect and need to be repaired or replaced.

    The RCH has a number of patients using these machines but has received no reports of defects or malfunction with our fleet of machines. Regardless, we are making this information available to our patient families and updating you on the actions we are taking.

    The TGA advice is that within the defective machines, there may be breakdown of the internal foam that is used to reduce noise. The potential issues are:

    • Black particles/debris in the tubing/circuit that might be breathed in when the machine is being used.
    • Chemicals might be released from the foam when it breaks down.

    Symptoms that patients might experience from affected machines include headache, irritation (of eyes, nose, airway or skin), cough, chest pressure, nausea/vomiting and sinus infection.

    The RCH supports the advice from the TGA that, given the very small instance of defect, and in the absence of any evidence of long-term harm, stopping treatment would be more harmful to your child’s health.We advise families to continue using their device unless their doctor has recommended otherwise.

    All affected Philips machines that have been provided by the RCH will be registered on the recall website as set up by the TGA and Philips.

    Trilogy ventilator

    All families of patients using the Trilogy ventilator have been contacted to ensure they are using the bacterial filter in their circuit and have instructions on how to replace this filter regularly. Philips will arrange a repair of these devicesas soon as possible as a priority.

    CPAP devices

    The RCH is in the process of purchasing replacement CPAP machines from an alternative company and will contact families to arrange this replacement as soon as they are available. If you have further concerns or wish to speak to your respiratory physician, please contact either the Complex Care Hub if your child is under complex care or the respiratory nurses at the RCH via email: respiratory.medicine@rch.org.auor call 03 9345 5818 during business hours.

    Asthma

    Australia has one of the highest incidences of asthma in the world and asthma remains the most common disease in childhood. One in four Australian children will have at least one episode of asthma per year. The department cares for over 600 children with asthma, the majority of which are outpatients.

    The management of asthma in children cannot be directly extrapolated from adult care due to the differences in the pattern of asthma, the natural history, the potential for side effects, mechanisms for drug delivery and anatomical factors. For the majority of children, asthma will either resolve or at least improve with age and to date there is no evidence to suggest that treatment influences the natural history of asthma. There is a large variation in the pattern and severity of asthma in childhood. Optimal asthma management is very rewarding, allowing a child to achieve normal quality of life, normal levels of cardiopulmonary fitness and normal growth. Children are more susceptible to side effects of long-term medication, therefore it is important to ensure that a balance is achieved between the intensity of the treatment and the severity of the asthma.

    Wheezy infants

    Wheeze in infancy may be due to a number of diseases such as bronchiolitis, cystic fibrosis, gastroesophageal reflux, an inhaled foreign body, viral illness or congenital lung abnormalities. If it is persistent or severe, referral to a tertiary centre should be considered for investigation and treatment.

    Exercise Induced Asthma

    Exercise Induced Asthma (EIA) is common in children, affecting up to 90% of children with asthma. Children with asthma may be unfit because EIA limits their endurance. However, with appropriate management and training, children with asthma can achieve normal levels of fitness. Children should be encouraged rather than discouraged from participating in normal sporting activities.

    Further reading

    Cystic Fibrosis

    Cystic Fibrosis (CF) is a genetic illness without a cure. In Victoria it is usually diagnosed in the first two months of life through the newborn screening programme (commenced in 1989). CF primarily affects the lungs, pancreas, liver, reproductive organs and sweat glands. The management of a patient's cystic fibrosis is a multidisciplinary team approach, with close cooperation and collaboration with the patient and their family. This involves a high level of commitment from families with the need for regular treatment at home which includes daily chest physiotherapy, oral antibiotics, a special diet, enzymes, salt tablets and nebulizer treatments.It is impossible to predict the outcome for any individual with CF but over the last few decades the outlook has improved significantly and continues to do so as a result of multidisciplinary and increasingly standardised care in specialist CF centres.

    Most patients with CF are required to take enzyme capsules before they eat a meal or snack so that their food is digested normally and can be absorbed. The dose of capsules varies according to each patient's individual needs however, the dose usually increases as the patient grows older. Patients also require a high fat, high calorie and high salt diet with approximately one and a half times the amount of calories per day compared to a person without the disease.

    As an outpatient, patients are reviewed by the CF multidisciplinary team every two to three months to assess their medications, diet, chest physiotherapy and psychosocial needs. If there is a significant decrease in lung function and an increase in symptoms, an admission to hospital is usually required. This is usually for a period of 10–14 days for intravenous antibiotics, intensive chest physiotherapy, and daily review by the physiotherapist, dietitian, medical consultants and CF counsellor. Oral antibiotics will be continued for at least a week after discharge from hospital.

    The RCH cares for 300 children with CF and complies with nationally and internationally recognized infection control protocols for outpatient consultations and inpatient admissions. When visiting the outpatient clinic patients with different bacterial strains of infection are reviewed on separate days to decreases the risk of cross-infection. In the hospital, a patient with CF is never nursed in the same room as another patient with CF, and they are nursed in a single room if one is available. Cross infection measures are closely followed by all staff in relation to hand washing, cleaning of equipment and staff allocation.

    The aims of treatment are to allow people with CF to live a normal life with a minimum of lung disease and optimal growth. Most males and some females with CF are infertile however, IVF techniques now offer the possibility of parenthood for people with CF. Please do not hesitate to contact me if you require further assistance.

    For more detailed information regarding the management of children with cystic fibrosis at the hospital please refer to the Cystic Fibrosis Management Handbook (PDF 1.3 MB).

    Further reading

    The RCH Sleep Service

    A sleep study or polysomnography involves the continuous monitoring of sleep and breathing patterns throughout one full night. The test is a non-invasive test but requires a number of sensors and electrodes to be attached to you/your child before they go to sleep. The attachment of these sensors to the skin of the head and body is safe and will not hurt.

    A sleep study is used to investigate respiratory and sleep disorders including:

    • snoring and obstructive sleep apnoea
    • abnormalities in breathing
    • excessive daytime sleepiness
    • unexplained nocturnal waking
    • effectiveness of ventilatory support

    Other sleep disorders including:

    • sleep walking
    • insomnia
    • circadian rhythm disorders
    • narcolepsy
    • night terrors

    More information about the RCH Sleep Service

    Other Melbourne paediatric sleep units:

    Home ventilatory support

    The department provides nursing support for parents and hospital staff caring for children requiring:

    • supplemental oxygen at home
    • tracheostomies
    • non-invasive ventilation (CPAP and bilevel ventilation).

    The complexity of care for these children has increased in recent years and with improved techniques is likely to increase further in the coming years. A close working relationship with the Melbourne Children's Sleep Unit and the Chronic Ventilation Service at the Austin and Repatriation Hospital is established to assist with the care of these patients into adult life.

    Acute respiratory illness

    • Acute viral bronchiolitis
    • Croup
    • Complex pneumonias
    • Congenital abnormalities of the lung

    Videos

    How to take a cough swab at home

    How to collect a sputum sample at home

    CF WEBINAR: Mutational therapy in Australia – where are we now? -– Professor Phil Robinson

    CF WEBINAR: Clinical Initiatives in the RCH CF Clinic – Dr Jo Harrison and Dr Katherine Frayman

    CF WEBINAR: The Daily Challenge of Adherence to CF Therapies

    Sweat Test Guide