Looking after your child

It is important to encourage children and young people to take regular exercise. This helps them to keep fit, boosts their immune system and releases the body’s natural ‘feel good’ chemicals which give them a heightened sense of well-being.

Exercise doesn’t mean they have to do anything excessive. Activities to consider are:

• Basketball/volley ball/netball
• Swimming (in clean, chlorinated swimming pools)
• Badminton/tennis
• Dancing, yoga, pilates
• Cycling, scootering or roller-skating
• Walking – just down the road, to the shops or taking the dog for a walk

Encourage them to build up exercise gradually and find something that they enjoy, so that it doesn’t feel like a chore. Don’t let them do too much too often or they’ll feel exhausted and it may put them off doing anything at all. Many people who have CGD find that they get tired more easily than others, so don’t let them do too much or they may end up feeling exhausted.

A few minutes of exercise that speeds up the heart rate is good, but if they have breathing or heart problems, take advice from your nurse or doctor first.

Check out your local health centre, library and sports centres for local classes for kids and young people. Many local council-run sports centres have a gym and offer classes for different age groups and abilities/levels of fitness. They often have a discount card scheme and concessions rates.

….helps maintain a healthy weight

People with CGD often have problems absorbing nutrients because their bowel can be inflamed. It means they tend to use up energy quicker than other people and need a bit more ‘fuel’.

…keeps the immune system healthy

Eating a healthy diet that is rich in antioxidants such as vitamins A, C and E, zinc and selenium helps the body fight infection and maintain the immune system.

It is vital that your child or person you care for with CGD eats regularly and has a balanced diet. It’s the best way to maintain their weight and ensure their body has the fuel it needs.  ‘Balance’ is key. This doesn’t mean that they have to avoid treats such as burgers and pizzas completely. They can eat them in moderation as long as the majority of their food is nutritious.

Try to encourage them not to skip meals. This may be especially difficult if they are going through a phase of not wanting to eat very much or seem to be losing weight. Try giving them three small, manageable meals a day and healthy snacks for break time, after school and before bed, such as plain biscuits, milky drinks, cereal, fruit or yoghurt.

Most people do not need to take vitamin supplements and can get all the vitamins and minerals they need by eating a healthy, balanced diet.  Your GP or medical team may recommend specific supplements if you need them.  General advice about vitamin supplements can be found at https://www.nhs.uk/common-health-questions/food-and-diet/do-i-need-vitamin-supplements/

The power of a good rest is often underestimated, especially by children and young people. They often want to keep up with their friends and don’t want to feel ‘different’. Encourage them to take plenty of rest to build up their reserves. You may have to explain to them that if they get tired and run down, they won’t be able to stay well and could end up being able to do even less with their friends.

There will be days when they feel generally weary and they may complain of having achey legs or joints. On these days, remind them that that this is their body’s way of telling them to take some time out and have a break. It’s important that you both watch out for these signs – they’re like an early warning system to help them stay away from infection.

A ‘duvet day’ can also be a good thing to encourage. Every now and again they’ll benefit from a lazy day, an early night or doing something relaxing just to re-charge their batteries. Try to make this downtime as fun-packed as possible so they look forward to it rather than seeing it as time away from friends and other things they’d normally be doing.

This is important for a number of reasons:

• If your child feels fit and well, they’ll be able to go about their daily life and do what they want
• Keeping free of infections means they’ll be less likely to end up in hospital
• Avoiding infections when they’re young can make a difference to how well they are when they are older

As a parent, helping your child to be well and healthy when they’re young – and helping them to look after themselves as they grow into young people – will benefit their future health. For instance, if they have lots of chest infections, their lungs are more likely to get scarred which can lead to breathing problems.

Sometimes influenza can cause a nasty chest infection. So make sure you ask your GP for a flu vaccine in the autumn every year.

People with CGD do sometimes get sore gums and mouth ulcers. Not looking after your teeth makes it really easy for bugs to get into the blood and cause an infection. To avoid this remember to help young children brush their teeth in the morning after breakfast and before they go to bed. Encourage older children and youngsters to do the same. Where possible we recommend that you use an electric toothbrush. You can ask your dentist which one they recommend. Use any toothpaste available in the shops containing fluoride. Using a mouthwash can help to keep sore gums and mouth ulcers away.

It is important that your child sees the dentist at least every six months. Make sure you tell them your child has CGD and that if they have to have a tooth out, or other dental work which might make their gums bleed, they’ll need to take extra antibiotics before and after their trip to the dentist. This is to make sure they don’t get an infection. Ask your doctor or CGD nurse about this when planning a trip to the dentist.

Good oral health isn’t just about brushing regularly. Remember, sugary drinks and sweets can cause a lot of damage to teeth. This doesn’t mean your child can’t have them but try to keep sweets as treats. It’s better to have them at mealtimes rather than on and off during the day as they cause less damage to teeth.

You may find that your child’s skin is extra sensitive. Buy soap-free body wash or fragrance-free cleansers and skin care products for them, and use plenty of moisturiser. If you are concerned about their skin, talk to your doctor or nurse.

Sun care

Some people with CGD find that they are extra sun-sensitive. In the sun, they may burn more easily, develop skin rashes or blister. Some medications, such as steroids and septrin, can also make some people more sun sensitive.

Sun safety for children and young people

• Apply high factor sun cream (SPF 15-30) or sun block to your child. Re-apply it every couple of hours.
• Give them a hat, sunglasses and a T-shirt to wear in the sun.
• Don’t forget to protect easily-burnt places like feet, hands, faces, ears and the back of their neck.
• Remember sun can get through clothes – dark clothes protect the skin better than lighter colours.
• Try to keep them out of the sun between 12–3pm. This is when the sun is at its hottest.
• It’s particularly easy to burn when swimming or on a boat trip. The light reflects off the water and you can spend a lot of time in the sun without realising – so take extra care.
• When your children have been out in the sun make sure their skin gets plenty of moisturiser. You don’t need to spend money on expensive aftersun products – a good ‘ordinary’ moisturiser will do just as well.
• Make sure they drink plenty so they don’t get dehydrated.

Having CGD could have a huge impact on your child’s emotions.

Your child’s emotions

Even if CGD doesn’t affect your child that much, they may still have strong feelings about it. They could feel angry that they’ve got it and that could make them feel cross with you. They might also feel guilty because they think they’re causing you and other family members and friends to worry about them. They have the condition to deal with on top of all the usual stresses of growing up, like school, exams, boyfriend or girlfriend trouble and becoming more independent.

Taking medication on a daily basis and feeling ‘different’ from their friends can be a real additional strain and you may see it taking its toll in their behaviour. Let them know there is always someone they can talk to about it, whether it’s you, other family members or friends. And if this is ‘too close’, there are other options. Sometimes it can be helpful to talk to someone in a similar situation, and share experiences, discuss problems and possible solutions.

They might find it helpful to talk to a nurse or doctor who they get along with, or a school counsellor, social worker or a psychologist. You may be able to access help through your hospital or GP or a service called Improving Access to Psychological Therapies (IAPT). Visit the IPAT website for a list of services in your region.

Talking to someone

If you would like to talk to someone about your own or your child/children’s feelings, ask your GP, hospital doctor, or the CGD nurse to help arrange this.

People often think that if they talk to a psychologist or counsellor it means that they are ‘mad’ or that they will be ‘labelled’. It doesn’t mean that at all – it’s about helping you and your family find ways to cope and talk through how you are all feeling. You take tablets to look after your body and it’s just as important to look after the way you feel. There’s help out there for you – don’t struggle along on your own.

Thinning of the bones – osteoporosis – is quite common in the general population, particularly in later life. Having thin bones means you are more likely to break one (even from a minor accident). Important bones, such as hips and knees, are also vulnerable to ‘wearing out’ (If this happens, you’d need an operation to replace the worn-out joint with an artificial one.) Some people with CGD are at risk of developing thin bones, particularly if they have had periods of being very underweight as children or young people.

Bone thickness (or density) gradually increases during childhood and early adult life until it reaches its peak at around 30 years of age. After 30, bones begin to get thinner. Things we do in everyday life when we’re young can affect how much we hold on to later in life. For this reason it is really important to help your child to look after their bones early on.

Osteoporosis risk factors

Doing the following, increases your risk of developing thin bones:

• Smoking
• For women, not having periods or stopping periods earlier in life
• not enough physical activity
• Being underweight
• Diet (if your diet is low in calcium and vitamin D)

So some even quite young people with CGD may be at risk of developing thin bones if they are very underweight, don’t get any exercise or have a poor diet, especially one that is low in calcium. If your child has bowel inflammation or takes steroids for any length of time, this too can cause thinning of the bones.

Strengthening their bones

The good news is that there are several simple things that you can do to protect your child’s bones:

Give them a bone-healthy diet – Healthy bones need a well-balanced diet, especially plenty of calcium. The best sources of calcium are milk and dairy products such as cheese and yoghurt. It’s also found in green leafy vegetables, baked beans, bony fish and dried fruit.

Encourage them to exercise – Like muscles and other parts of the body, bones suffer if they are not used. They need regular weight-bearing exercise like running, walking, playing tennis, badminton and basketball. Dancing counts, too. These types of exercise stimulate bones to get stronger.

Smoking lowers your immunity and damages the lungs, whether you’re doing the smoking yourself or being exposed to passive smoke from other people’s cigarettes. If you smoke, you are likely to get more infections, particularly chest infections and could develop long-term problems with your chest and breathing. If you are a smoker, your cigarette smoke isn’t going to help the respiratory health of your child with CGD. If you want help with quitting, speak to your GP or contact the NHS support service Smokefree on 0800 0224332 or visit www.smokefree.nhs.uk.

The same applies to young people with CGD. They should be discouraged from smoking and given as much help as possible to stop. If they smoke, people with CGD are also more likely to suffer from flare-ups if they have bowel inflammation as part of their condition. Not only that but smoking also causes thinning of the bones. It is particularly important for CGD-affected people not to smoke ‘dope’ (marijuana) – it actually contains fungus which is inhaled straight into the lungs.

Statistics show that the average age of a UK child when they have their first whole alcoholic drink is 12 and a half. And by the age of 15, many teenagers are drinking regularly. Having a chat with your child about this is vital, especially when they have CGD.

Drinking alcohol regularly when you are young can cause long term damage to your liver, and interfere with CGD medicines, making you feel unwell. Or you may even forget to take them if you have been drinking.

Of course, enjoying a social drink with friends and family is a part of adult life for many people. As they head towards adulthood, you may decide to allow your child to enjoy a social drink with friends and family at home. It’s an important learning process for a young person to learn how to do this without getting themselves into difficult situations. It may also be an opportunity to audit your own drinking habits too, if you feel that’s necessary.

Remember, children learn by example. Stick with the UK Government alcohol consumption guidelines. The UK Chief Medical Officers’ guideline for both men and women is that to keep health risks from alcohol to a low level it is safest not to drink more than 14 units a week on a regular basis. “Regularly” means drinking every day or most days of the week.

It may be hard for you to visualise how your child will live their life with CGD as they grow into a young person. How will they feel? What are the most important things for them to look out for? You might find like to adopt the view of Bobby, one young person with CGD who manages to live to the full. His rule is: “Don’t let CGD stop you doing anything – you can usually find your way around a problem.

Important things for Bobby

• Eating well
• Having fun
• Having an education – getting through it, although it may take longer than it does for other people
• Having strategies for coping with being ill
• Keeping in contact with friends, so that you don’t lose touch and you don’t feel as though you’ve been in prison
• Trying to have an aim every day, like going for a walk
• Speaking to the CGD nurse if you have any worries.

Bobby’s five top tips for staying well

1. Keep fit – physically and mentally. This helps you to recover faster if you do get ill
2. Take vitamins
3. Don’t smoke. Smoking weakens the lungs and makes it more difficult for your body to fight off infection. It is especially important not to smoke when you have a lung infection
4. Don’t drink alcohol too much or too often
5. See a doctor or phone the CGD nurse if you’ve got a temperature or you are feeling unwell.

Your child may start growing later than their friends, but they will catch up with them eventually, especially if they eat a healthy diet and get plenty of rest. If you are worried about their self-image and self-esteem, you may want to talk to someone about it, like one of our clinical psychology team.

If they want to talk to other people affected by CGD about things they like to do, contact the CGD Society via email or by using the form at the bottom of the page. We can put them in touch.