Children with ChILD often need more calories because of their increased breathing rate and this means they have to eat more than healthy children. When weight gain is good, then your child is likely to be in relatively good health.

Weight loss and poor growth are serious warning signs of a significant underlying problem and you must talk to your doctor.

All children with ChILD need to be regularly measured (weight and height) and the results plotted on a growth chart. Ask to be shown this at every visit. You may need the support of a dietician to calculate the required intake of calories your child needs if their growth is inadequate.

If your child becomes too weak to eat the required amount of food by themselves or they find it too difficult to take the amount of calories required by mouth, then they can usually be helped by using a special feeding tube that goes into the stomach. Usually the use of these tubes is only needed for a short while but sometimes they can be required permanently. Some medications can be given through the tube as well.

There are two main ways of inserting these feeding tubes:

• Nasogastric (NG): a soft, thin plastic tube which is passed via the nose down through the food pipe into the stomach. It is kept in place with a plaster on the cheek. Although the insertion of the tube is uncomfortable, it is not painful and does not require sedation (anaesthetic). Children usually become used to the tube in a very short time and it does not interfere with normal eating. Supplementary feeds can be given at set points throughout the day or continuously over several hours. Feeding tubes need to be changed every 3-6 weeks and you will be taught how to insert the tube by an expert.
• Percutaneous Endoscopic Gastrostomy (PEG): this feeding tube is inserted directly into the stomach through a small cut made into the abdomen. Small protective plates on either side of the cut help pin the tube in position. This requires a general anaesthetic and is usually a very safe procedure. It requires daily washing with water, drying and gently rotating. As it is hidden under clothes it avoids the attention of other children. Children with PEGs are able to swim, bath, participate in sport and need to be encouraged to continue eating independently. When the PEG is no longer needed it can be taken out easily.

• Any child with a significantly weakened immune system has an increased risk of infection. This includes risk of infection transmitted by food.

Essential recommendations:

• Do not leave food that requires cooling at room temperature
• Meat, processed meat (sausages etc), seafood and dairy products should be stored in the fridge
• Raw meat must be cooked completely through and either eaten on day of purchase or promptly cooled for eating later
• Only use fresh eggs and cook them completely (egg white and yolk must not be "runny")
• Slightly mouldy food products must be disposed of. Heating may kill the moulds but does not remove the toxins
• Do not leave warm food out - eat it freshly cooked or store quickly (in less than 2 hours) in the fridge after cooking. Leftovers in the fridge need to be heated through completely before eating.

Follow expiry dates on food and under no circumstances use beyond these dates.

Personal hygiene recommendations:

• Wash hands before and during food preparation (especially raw meat, seafood and eggs)
• Clean work surfaces frequently
• Strictly separate working equipment e.g. cutlery, bowls, cutting boards) when preparing raw meat, eggs, salad etc., for other family members
• Do not use wooden boards for food preparation or as a replacement for plates. Plastic, stone or porcelain boards are acceptable alternatives.
• Dishcloths, sponges, brushes and tea towels used for washing and drying dishes need to be dried and changed often

The main reason for young children to get infections is because they have immature immune systems and physically smaller airways.

Children with ChILD do not usually become more frequently ill with infections than healthy children (unless they are on steroids or other immunosuppressive medication), but they do have a higher risk of becoming more severely ill with them.

The desire to protect our children is strong but the relative risk-benefit and cost of any protective measures need also to be considered:

• No measure can 100% protect your child from infection
• Excluding your child from nursery, school, sports club and birthday parties because of the fear of exposure to infection reduces the risk, but will also significantly reduce their quality of life. These measures may be required for individuals in special cases but are not necessary for all children with ChILD.

Your healthcare professionals will advise you which measures to take after carefully weighing up your child's individual risks with the benefits. The severity of the disease and history of previous infections will be taken into consideration.

Preventative measures that can be taken by all children with ChILD:

• Implementation of all recommended standard vaccinations
• Annual influenza vaccination
• Hand washing to reduce infection transmissions
• A healthy vitamin rich diet
• Avoidance of people with a known infection

Smoking causes significant lung damage so there should be no smoking in the presence of children with chronic lung disease (it is particularly dangerous near children using oxygen). We recommend that:

• There is no smoking in the presence of a child with ChILD.
• There is no smoking in places where the child spends significant amounts of time even when the child is not there.

Providing a safer living environment for your child is even more successful when smoking parents quit. Contact your doctor if you need professional help with quitting.

Breathing rate: if your child's rate of breathing increases this often indicates a problem. Get to know your child's usual breathing rate when they are well. Lay your hand on your child's tummy and count how often it is raised in 60 seconds. The best time to do this is when your child is awake and well-rested.

Shortness of breath: look for signs of 'indrawing' - this is where there is a sucking in (drawing in) of the skin between the ribs or above the collar bones with strained inhalation (breathing in). Older children will tend to sit upright and not lie down when they feel short of breath as sitting upright makes breathing easier.

Drop in oxygen saturation: if you have an oxygen saturation monitor at home you should understand that oxygen levels fluctuate normally throughout the day and night in a healthy person and a person's posture can affect saturations. You need to be aware of your child's "normal" saturations and if there is a drop of more than 5% from this point then you should contact your child's doctor.

Breathing sounds: unusual sounds e.g. wheezing, whistling when breathing out with strained breathing can be another sign of difficulty breathing. Your doctor may provide you with an inhaler if this is persistent.

Other signs include:

• Pale skin
• Blue discolouration of the lips
• New or worsening cough
• Not able to talk in full sentences without taking a breath between the words
• Restless, agitated
• Listless, apathetic
• Lethargic, drowsy
• Increased sweating
• Fever
• Vomiting
• Tummy ache
• Loss of interest in eating or drinking

Always trust your own judgement - you are the expert in your child.

Mild symptoms: It can take a little while to learn how important different symptoms are but if you are concerned then you should contact either your local paediatrician or the treating specialist centre. The urgency will depend on the severity of your child's complaint. Mild tummy ache, a snuffle or fever when your child seems otherwise well does not suggest that your child is in immediate danger. These cases are treated no differently than for otherwise healthy children. But do consult a doctor whenever you are uncertain or worried.

More severe symptoms: It is especially important to consult a doctor when your child's condition is severe and your child is repeatedly ill or has previously required hospital treatment for illness. With these more concerning categories it is helpful to have a plan of action established in case of emergencies.

Emergency plan: It can be very stressful in an emergency situation to think clearly so having a clear, prepared plan available is invaluable. Talk to your child's treating doctors and develop this with them. The emergency plan should include a prepared list of all vital information for an emergency team including:

• Name
• Age
• Weight
• Underlying diagnosis
• Regular medications
• Ventilation parameters
• Dosage of emergency medication given
• Names and phone numbers of parents
• Names and phone numbers of treating doctors

It is possible, and essential, for most children with ChILD to attend nursery or school. The exceptions would be if your child is too unwell to go or has frequently and severely fallen ill with airway infections in the past.

Carers or teachers should be given information about your child's condition and what they must do in an emergency. This might include in some cases providing a written emergency plan and ensuring that any emergency medication required is stored safely there.

Sometimes, children can be stared at or teased by other children; particularly if they are on oxygen therapy. An education session at the nursery or school can usually help deal with this.

Sport and exercise should be encouraged and not restricted. This has a positive impact on the general health of the lungs and also has positive social benefits. Only in rare circumstances is a certificate for exemption from sport required.

The important thing is to make sure that children are encouraged to take part, exempt from grading and allowed to rest if they need to. It is also important not to push a child beyond their own physical limits or to become too active or competitive.

Any kind of sport or exercise is beneficial - the most important thing is that your child has fun and remains active. Talk to sports teachers about enabling your child to get as much exercise as they are capable of.

Holidays and travel with your child are all possible if their overall health is stable. If oxygen therapy is needed, then there are more things to think about. Your healthcare team can advise on issues such as, making sure an electricity supply is available at your destination if your child needs a ventilator or oxygen concentrator.

We recommend that you select a destination and mode of travel based on your child's needs. If travelling abroad, contact your doctor well in advance to check if any immunisations or flight simulated oxygen tests are required. You will need to take a medical travel folder for your trip including copies of important medical documents and a list of current medication and therapies for your child.

Taking out additional health insurance is sensible as medical care in a foreign country can be very expensive.

If travelling by air, check out the European Lung Foundation's air travel website for more information on planning your trip and to access an airline index listing individual oxygen policies for airlines including contact details.

Financial and practical support from the Government in your country may be available to help you manage. Find out what you are entitled to and make a claim as soon as possible.

There may be additional care and respite services that you can access for your child or for yourself - sometimes having a short break away can help with the daily challenges.