Medication - for Parents & Carers
It is vital that your child takes their CGD medicines every day.
It’s easy to forget all sorts of things as a parent, like packing your child’s games kit or giving them their dinner money. But this is one thing you need to keep on top of.
Taking daily preventative medication is the best way of making sure your child doesn’t get infections.
If they have CGD, it means some of your child’s white blood cells don't work properly. So the body needs extra help to fight off infections. Daily medicines provide them with that extra help.
Sometimes the medicines won't quite be enough to help them fight off infections, even if they've taken them every day without fail. It’s best not to feel despondent about this - taking the medicines means the infection shouldn't be so serious and that your child will be back on their feet faster.
So what medicines do they have to take? And how do you know if your child has an infection? We take a look at these issues below.
Antibiotics (medicines for bacterial infections)
The antibiotic that most people with CGD need to take to prevent infection is co-trimoxazole (also called Septrin). Co-trimoxazole protects against a number of bugs that can cause problems in CGD and most people find that they can take it okay. A few find that Septrin doesn't agree with them. This is quite unusual but if this happens it’s possible to use another, similar antibiotic.
Antifungals (medicines for fungal infections)
The antifungal medication recommended to prevent infection in CGD is itraconazole (also called Sporonox). It helps prevent fungal infections caused by a fungus called Aspergillus, one that people with CGD are more likely to get. Most people get on okay with itraconazole but a few find that it gives them stomach pain or diarrhoea. This problem can be sorted out by changing how the medicine is taken.
My child is telling me they feel okay. Do they still need their medication?
It might have been a long time since your child was ill. Perhaps they say they feel fine now and don't want to take their medicines or you've been wondering if they're necessary. Regardless, it is important that they keep taking their prescribed medicine because they are helping to keep them well. The problem with CGD is that it is hard to predict when an infection might happen, or if it does, how serious it will be. If they stop taking their medicines, sooner or later they will develop an infection of one sort or another. This will interrupt their plans and stop them enjoying the things they usually do.
Older children in particular may be tempted to skip their medication, especially if they're fed up with having CGD and think that this will help them 'forget' they've got it. But don't let this happen - these medicines help them to lead as normal a life as possible.
Preventing infections in CGD is important for a number of reasons including that it will:
- keep your child feeling fit and well
- help keep them out of hospital
- minimise the chances of causing damage that will affect their future health. For example, having lots of chest infections can cause lung scarring and lead to breathing problems in the future.
How do I know if my child has an infection?
Knowing the signs of infection helps you to recognise it quickly. This means that infections can be treated quickly and easily and that your child will be back on their feet faster. Look out for:
- warm, tender or swollen areas
- sores with pus or rashes
- cough or pain in your chest
- problems with breathing
- diarrhoea that doesn't go away after a couple of days
- frequent or persistent headaches
- severe sweatiness at night
- loss of appetite
- weight loss
- vomiting shortly after eating on a more or less consistent basis
- pain or difficulty on passing urine
- difficulty swallowing food
How do I know if I have a fever?
Having a fever or temperature is a sign that the body is trying to fight off an infection. Your child has a fever if the thermometer says their temperature is 38 degrees or above. Keep a thermometer at home and make sure you know how to use it.
They may complain about 'burning up', feeling 'shivery' or alternately hot and cold. Taking paracetamol will help them feel a bit better and will probably take the fever away for a few hours. But this doesn't mean that the reason they have a temperature has gone away.
So, give them paracetamol to ease the symptoms and get them checked out too. See your doctor or call the CGD clinical nurse specialist. You can also email the CGD nurse which is sometimes easier than having to talk on the phone or face-to-face
This page has been reviewed by our Medical Advisory Panel.
Our website contains a wealth of information to help and support you. If you are not able to find the answer to a specific question, feel free to contact us using the form at the bottom of the page or by emailing or calling us. We are here to help.