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What do people with CHS need to carry with them?

For most children and adults who need ventilation at night only, there is no need for any equipment to be carried with them in the day, apart from that needed to look after the tracheostomy: ie suction and emergency tube change. For infants and young children who still have daytime naps, or those who need ventilation during part of the day, the individual should have their ventilator, tubing (and facemask, if applicable) and a self-inflating bag. When used, patient monitoring will also be needed, ie pulse oximeter.

Patients may wish to carry a ?disease identification’ card, ?patient passport’ or list of emergency contact numbers, or wear a medical alert bracelet in case of emergencies.

Are different modes of transport safer, or unsafe, for people with CHS?

Individuals with CHS may travel by any means. However, some preparation is needed before undertaking long haul flights, including contact with the airline if ventilation is likely to be needed. Most adults and children have lower oxygen levels during commercial airline flights, including individuals with CHS. Whether oxygen is needed for CHS patients is uncertain, but pulse oximetry may be applied in flight and, if planned, ventilation commenced if SpO2 falls, eg <90%.

Do children with CHS need extra help at school?

There is an increased likelihood of special educational needs for individuals with CHS. These should be assessed before beginning full-time schooling and at intervals thereafter. Children should not be disadvantaged if they have any special needs, eg dyslexia or shortened concentration.

All school staff who come into contact with the child with CHS should be aware of the condition, especially in relation to any emergency needing airway clearance or assisted breathing, eg reduced consciousness. Additional staff or training for staff may be needed for younger children with tracheostomies.

Individuals with CHS should avoid underwater swimming, as severely low oxygen levels may develop sufficient to produce loss of consciousness, but without a perception of this developing. Individuals with CHS should be closely supervised while swimming by a carer aware of their condition and the risk of low oxygen levels and altered consciousness.

Some children with CHS, and specifically any who are symptomatic, may need specific assessment of their exercise tolerance in order to guide what activities they may be included in.

Do children with CHS need the same immunisations as others?

Yes – all the usual immunisations should be given. There are additional immunisations that can be given to help reduce the risk of influenza respiratory infections, and to protect against some types of bacterial (pneumococcal) pneumonia (pneumococcal polysaccharide vaccine).

Palivizumab is a course of monthly injections of antibodies against respiratory syncytial virus (RSV), a virus which produces chest infections in the first year or two of life and may become serious in the child receiving long term ventilation. Palivizumab should be considered in children who are on long term ventilation (LTV) aged less than 12 months at the start of the RSV season.

Are there any other measures that need to be taken for the child with CHS?

Children with CHS are at particular risk if they acquire lower respiratory infections, as this may adversely affect their respiratory drive and lower oxygen levels. Exposure to tobacco smoke is closely linked with increased rates of respiratory infections, so measures to exclude smoke from the environment of children with CHS are advised.

Can people with CHS take medicines as usual?

Medicines with a ?sedative’ effect should be avoided, unless ventilation has already been considered and planned for. Alcohol presents particular dangers because of the social use of this sedative.