Nebulised pentamidine

Nebulised pentamidine is a medicine given to children to prevent a type of chest infection called Pneumocystis Jiroveci pneumonia. You may hear the doctors and nurses referring to this as ‘PCP’ as it was previously called Pneumocystis Carinii pneumonia.

This infection is due to an organism (bug) that is probably present in most people’s lungs. Children who are receiving long term medicines which interfere with the body’s ability to cope with infections may be more at risk from this type of pneumonia. The symptoms of this infection are a raised temperature, rapid breathing and a dry cough.

Pentamidine is inhaled via a special nebuliser once a month. Air is blown through the nebuliser via a mouthpiece. If your child is unable to hold a mouthpiece, then a face mask can be used. The process will take about 20 minutes.

It is possible that your child may experience a strange taste while using the nebuliser. If this occurs, the nebuliser can be stopped temporarily so that your child can have a drink.

Please inform your doctor or nurse if your child has a history of wheeziness, asthma or has recently had a cough, cold or high temperature. The doctor will assess your child and may prescribe a different inhaler or nebuliser to open your child’s breathing passages before the pentamidine is given, if it is felt necessary.

Please tell your doctor if your child’s sickness is not controlled or persists.

If this occurs while your child is receiving pentamidine, the nebuliser should be stopped and the doctor informed.

Please tell your doctor or nurse if your child develops a rash. They will advise you on the appropriate treatment to use.

Some medicines can react with pentamidine, altering how well it works. Always check with your doctor or pharmacist before giving your child any other medicine, including medicines on prescription from your family doctor (GP), medicines bought from a pharmacy (chemist) or any herbal or complementary medicines.

Pentamidine is possibly harmful to the unborn child, although this has not been proved. The following guidelines for safety are advised:

• Your child will be given nebulised pentamidine in a separate room, away from other children and parents. If given at home, it should be carried out in a well ventilated room with windows open to outside air. It is not advisable for other people to remain in the room during nebulisation, especially if they are pregnant, breastfeeding or planning to become pregnant. You should discuss this with your doctor or nurse.
• If you choose to sit in the room with your child, then you must wear a face mask. Where possible, do not sit your child on your lap because you will breathe the pentamidine in from behind.

If at any point your child needs a rest, the air cylinder should be turned off so pentamidine is not blown into the room. Your doctor or nurse will show you how to do this before your child has the pentamidine.