Children
This section contains information especially for parents of young children diagnosed with TSC.
If you live in the UK and would like more information after reading this page, or you simply wish to talk to someone, contact one of our Specialist Advisers. Visit the in your area pages for contact information.
What is Tuberous Sclerosis Complex (TSC)?
Most people have never heard of Tuberous Sclerosis. Even many doctors know very little about it. This section of the website has more information about living with TSC and, if you live in the UK, where you can go to get more information and support.
For general information about TSC, diagnosis, physical effects and genetics visit the Tuberous Sclerosis pages of this website.
TSC can be diagnosed at any time, usually depending on what signs and symptoms present. Children with TSC may have growths, sometimes called lesions, in organs of the body which could include the brain, heart, eyes, skin, kidneys, lungs. For some, these growths may not cause any problems but for others they can result in specific problems in the functioning of one or more of the organs.
As a result of the growths in the brain many people with TSC have epilepsy and some have learning and/or behaviour problems. However over half of people with TSC do not have learning disabilities.
Most people affected by TSC will live a normal lifespan and any problems related to their condition will be monitored and managed by their doctors.
Living with Tuberous Sclerosis Complex
Epilepsy
For many young children the first sign that they may be affected by TSC is epilepsy. This may start as infantile spasms in the first two years of life.
These last only a few moments and involve a sudden jerk of the trunk and limbs, followed by a stiffening of the muscles. Sometimes infantile spasms are mistaken for colic. Drugs are now available that are good at controlling infantile spasms.
As a child grows other types of seizure may develop. It is not always possible to control all the seizures that a child with TSC has.
Development delay
The presence of TSC growths in the brain and epilepsy can effect a child’s development and learning. The effects vary greatly from one child to another and it is difficult to predict how a child will develop. It is thought that very young children who have difficult to control epilepsy may have more learning problems than children whose epilepsy is well controlled or develops later.
Children with TSC may be delayed in their speech and language development. They may also have attention problems such as a short attention span, be easily distracted or be hyperactive. Some children with TSC will develop autism. If you are worried about your child’s development speak to your health visitor or doctor and they can refer you to a local service that helps children with development problems.
Behaviour
Children with TSC may have behaviour problems. It is difficult to know why they have these problems. It may be to do with the tubers in the brain, epilepsy, communication difficulties or difficulties in understanding the world around them due to learning problems. They may also have difficulties in sleeping.
Contact your doctor if you are finding your child’s behaviour difficult to manage. Your doctor will want to make sure there isn’t a medical problem causing the behaviour and if not can refer your child for specialist help.
Medical care
In the UK every child with TSC should have a primary or co-ordinating doctor. This could be a children’s doctor (paediatrician), a doctor specialising in genetic problems (geneticist) or in epilepsy (neurologist) or a family doctor (GP). The primary doctor is usually the doctor who confirmed the diagnosis. They will monitor a child throughout their childhood and will work with other specialists a child may need to see from time to time.
There are a few specialist TSC clinics in the UK and also a number of doctors with a particular interest in the condition. The primary doctor may refer a child to one of these specialists or seek their advice about particular problems.
Children with TSC should have the standard childhood checks available to all children. There is no reason why children with TSC should not have the standard childhood vaccinations however the risk of a febrile convulsion after vaccination means that children with TSC should be monitored carefully and treated with paracetamol to reduce fever should this occur.
Help and support
Because the effects of TSC are so variable the amount of support families may need is also variable. In some areas of the country support services have been brought together into one team and may work from a multi-agency children centre. Your doctor or health visitor should be able to advise you and refer you to the right place.
The following services may be available in your area and are there to help families who have children with additional needs.
- Health visitors are there to support you. They advise on managing everyday problems and can put you in touch with specialist services.
Specialist nurses are found in some local areas e.g. community paediatric nurses and specialist epilepsy nurses. - Occupational therapists work alongside health and social services staff. They advise on managing daily tasks like dressing, washing, toileting, and feeding. They can help you find special aids and equipment and sometimes supply it.
Continence advisers can give advice about toilet training and may supply bigger nappies if your older child needs them. - Physiotherapists give treatment and advice to help mobility difficulties.
- Speech and language therapists help with difficulties with feeding, speech, language, non-verbal communication, reading and writing.
- Portage workers visit your child at home and plan activities and exercises to help early education and development difficulties. Not all areas of the country have this service and in some areas they are called pre-school or early education visiting services.
- Early years inclusion workers work with playgroups and nurseries to make sure children with additional needs are able to attend. They can sometimes pay for extra staff if needed.
- There are different types of Psychologist. Clinical psychologists can help if your child has behaviour or mental health problems. Educational psychologists work with children to ensure they get the right amount of support in school (see Education section below).
Social services
Your local social services department can provide practical assistance in the home, leisure services like play schemes and friendship schemes, home adaptations and help with equipment, babysitting services and respite care to give families a break. As a parent you have a right to ask for your child’s needs to be assessed and for your own needs as a carer to be assessed.
Many families do not like to ask social services for help and are worried about what might happen or what people might think. However most areas have specialist social workers who only work with disabled children and have an understanding of the difficulties families have.
Education
Many children with TSC attend mainstream schools and nurseries, some with extra support.
If a school feels it is unable to meet a child’s needs it may ask external agencies to help or ask the local education authority to make an assessment of the child’s special educational needs. A document called a Statement of Special Educational Needs may be issued which sets out how the needs will be met including whether the child needs any extra support and how much. Some children may need less support as they grow older while others may need more.
Each local education authority has a Parent Partnership Service which is an independent source of advice and support for parents. The organisation Contact a Family has factsheets on a variety of topics including special educational needs for more information click here or contact a TSA Specialist Adviser.
Financial Support
Disabled children and their carers may be entitled to extra benefits from the government. These include benefits like Disability Living Allowance and Carers Allowance and extra amounts added to Income Support and Tax Credits.
There are also trusts and charities that will fund special equipment and holidays. Contact a Family also has factsheets on benefits and financial help with holidays and leisure, for more information click here or contact a TSA Specialist Adviser.
Voluntary and community organisations and support groups
Local groups can be a great source of local information and support. Many areas have general support groups for families whose children have a variety of special needs. Some may offer services such as babysitting, transport, leisure and family activities. Some areas have local groups for children with specific difficulties such as epilepsy, autism or communication difficulties.
Support from the TSA
Not knowing what the future holds can be very difficult for parents and other family members. If you live in the UK the TSA is available to help. TSA Specialist Advisers can provide information, advice and support on the telephone, by email and through home visits. They can liase with professionals and organisations involved in the care of your child to ensure your child is getting the best service.
The TSA also runs regular events where families meet to share activities and experiences and a group of mildly affected adults (the Outlook Group) meets annually and provides mutual support to members throughout the year.
More information?
If you live in the UK and would like to talk to someone about anything you have read here or any issues this information has raised please visit the in your area pages to find your nearest Specialist Adviser.
A leaflet on this topic is also available Click here to download in PDF format
Page created by TSA staff June 2008, from text reviewed by Dr Chris Kingswood FRCP, Royal Sussex County Hospital, June 2006.
