Coping with physical symptoms

Symptoms such as chronic pain, fatigue, joint pain and obesity are common in children with growth disorders. There are many different reasons for these issues and the cause depends on the type of growth disorder your child has. 

It can be really hard to see your child suffer, but there are several things you can do to help with these symptoms.

Please note that these are only suggestions and are not intended as a substitute for advice from your doctor. You should always discuss chronic pain and other symptoms with your doctor.

Chronic pain

Your child will need to rest and also get lots of fresh air. Chronic pain is a drain on the body and can lead to problems such as fatigue, insomnia and irritability.

How can I help my child?

• Teach your child to rest - pain takes a lot of energy and can lead to fatigue: that is why your child may have less energy for other things. Make sure your child has plenty of time to rest during school times and that you schedule ‘quiet time’ to compensate for times when your child has lots of strenuous activities scheduled together. Work together with your child to find the type of schedule that would suit him or her best.
• Ensure that your child is taking their pain-killing medication as prescribed by your doctor at regular intervals to avoid the pain coming back between doses. 
• Teach your child to be flexible – they may have to miss out on things because of their pain. Help your child make use of the  ‘good days’ for fun things, and take it easy on the ‘bad’ (painful) days. 
• Let your child explore boundaries – your child must learn for themselves what they can handle, and when to stop. Within reason, it is worth allowing your child to push themselves sometimes so they can learn their own limits and how to look after themselves. 
• Provide distraction -  if your child's attention is focused on other things, they will be less affected by the pain.
• Live healthily - a healthy body will find it easier to cope with pain. 

Who else can help?

The physiotherapist and occupational therapist can help your child to cope with pain. For example they can teach your child how to protect painful joints by building up specific muscles. Your child’s doctor can also prescribe painkillers. Always talk to your doctor if you feel that the painkillers your child is taking are not providing enough pain relief. 

Chronic fatigue

Many of the recommendations for chronic pain also apply to chronic fatigue.

Like pain, fatigue can really affect quality of life. It can also lead to other problems such as poor concentration problems and depression.

How can I help my child?

• Work together - identify situations and activities that make your child tired - it’s a good idea to keep a diary of “bad” days to see if you can spot patterns that might cause fatigue. Keep this in mind when planning the weekly schedule and ensure there is plenty of rest time between activities. Try to look for stimulating activities that your child enjoys, which might be less tiring. 
• Teach your child to rest – taking frequent short breaks is better than one long one. Create space for your child to have ‘quiet time’ after a busy day.  Find things for them to do or use during quiet time, to relax and chill out.
• Exercise – physical activity can give you energy. Encourage your child to play outdoors and do sports. 
• Keep a routine – where possible try to stick to a fixed daily schedule with set bedtimes. This will help your child prepare mentally for what is ahead of him or her as well as getting enough rest. 
• Discuss - talk with your child about his or her feelings. Fatigue can also be affected by the state of mind. Having a growth disorder can be draining, your child may be going through a great deal emotionally. Try to talk together and encourage your child to make contact with children similar to themselves who understand what they are going through.

Who else can help?

Both your doctor and a child psychologist may be able to help with fatigue.

Joint problems

It is important not to overload the joints and to ensure that they remain active. Encourage your child to move a lot, (either doing sports or even just around the house) this keeps the joints supple and helps muscle strength as well as preventing weight increases. 

Swimming is a good activity as joints are supported by the water and your child’s natural buoyancy.  Kids also love to splash around so this can be a real release and good fun for them too.

How can I help my child?

• Good posture – this will help to make sure their muscles and joints are used as effectively as possible, so there is less chance of pressure on the wrong joints, which will cause damage and pain.
• Exercise – keeping mobile will help to keep the joints supple as well as building muscle tone. 
• Avoid sudden, hard movements – such as rapidly rising from a chair or running up a flight of stairs. Advise your child to move slowly and evenly as much as possible and do sports like swimming and cycling
• Stay healthy – keeping at a healthy body weight will prevent a burden on the joints especially the hips, knees and feet. 

Who else can help?

Rheumatologist: Your child’s rheumatologist may prescribe painkillers and be able to provide expert help about joint pain and development. 

Physiotherapist: Their physiotherapist will help with keeping the joints mobile and supple.

Occupational Therapist: Can help your child to move as independently as possible. 

Obesity

Obesity creates an additional burden on the body and its joints, thereby increasing the risk of new problems. Teaching your child to eat well and making sure that they get enough exercise will help to prevent obesity.

How can I help my child?

Remember that prevention is better than cure; trying to lose weight is very difficult for a child.

For most growth disorders there are special growth charts available; use these to monitor your child’s height and weight. If there is a rapid increase in weight, discuss this with your doctor as soon as possible.

• Provide healthy food - offer your child a varied diet that is rich in nutrients. Avoid saturated fat and sugar. Encourage your child to eat plenty of fruit and vegetables. Visit our nutritional advice page for more info.
• Give your child healthy portions - a child needs energy to be able to develop. Make sure your child’s portions are large enough to provide them with energy for everyday activities and growth, but not so big that they start to become overweight. Complex carbohydrates provide energy and are low in fat. Portions that are too small will leave your child hungry and then more likely to snack on unhealthy foods that are high in fat. 
• Involve your child in the meal – let your child ‘help out’ with the preparation of food and speak to them about what you are cooking and why. Understanding that food is nutritional as well as tasty, will help your child make good food choices.
• Exercise - encourage your child to play out and do sports. Being active may also include things like walking in the woods or running around in the park with friends. 
• Set a good example - eat healthily and exercise. Your child will pick up your good habits.

Who else can help?

For personalised nutritional advice, please contact your child’s dietitian. They can provide healthy eating plans and help with motivation and food choices if your child needs to lose weight. 

The symptoms mentioned above can have a profound impact on your child’s daily life and often interconnect, leading to further consequences. 

For example, if your child is overweight, they will likely suffer from joint pain which will mean moving around will be difficult, making them less able to do sports. In addition, your child may also be conscious that they look different and might be treated differently. As a result, your child may withdraw into themselves and lose friends. They can suffer with all sorts of thoughts and feel lonely and misunderstood. Supporting their physical symptoms will help to ensure that both their body and mind are as healthy as possible, and prevent further complications. 

Use the links below to find out more about: 

• Symptoms and types of growth disorders
• When to see your doctor and how to get diagnosed
• How to treat growth disorders
• How can we live with it - with stories from real life patients and a section on needle fear.