Being told that your child has TSC can cause a range of feelings that can be difficult to cope with. You may feel worried about the future. It is not uncommon for parents to have feelings of disbelief or denial. You may not have heard of TSC before and have lots of questions. When your child is diagnosed you will probably be given a lot of information all in one go and you may find this too much to take in at the time.
You will want the best for your child including the best possible healthcare, education and therapy. Learning about TSC will help you to feel more in control and more secure about your child’s future and will help you to support guide and care for them in the years ahead.
As you learn more about the possible features of TSC, it is important to keep in mind that TSC varies from person to person. Most people do not have all of the possible features of TSC and how severely a person is affected varies widely. It is also important to remember that with good medical care people with TSC can now expect to live healthier lives with a normal life expectancy.
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.
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.
Regular monitoring is important to identify any potential problems. The Tuberous Sclerosis Association (TSA) has published Clinical guidelines for the care of patients with TSC. Your doctor may find these guidelines helpful.
There are a small number of specialist clinics in the country and also a number of doctors with a particular interest in the condition NHS TSC clinics. Your doctor can refer you to one of these specialists or seek their advice about particular problems.
Some infants with TSC will have a type of epilepsy called “infantile spasms”. This form of epilepsy results in sudden jerks involving all or part of the body and can often be mistaken for the ‘startle reflex’ in newborns. Untreated infantile spasms may result in developmental delay. For this reason it is important that parents who think their child may be experiencing infantile spasms discuss this as soon as possible with the child’s doctor so that the epilepsy can be treated.
View podcast on “infantile spasms” produced by the TS alliance
DOWNLOAD our leaflet on infantile spasms
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. 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. The TSA has created the following information leaflets about epilepsy its treatment:
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. DOWNLOAD our leaflet on pre school children with TSC.
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.
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.
DOWNLOAD a copy of the Behaviour and Learning Guidelines
Link to listing of NHS TSC clinics
Our A-Z Glossary will help you to understand some of the medical terms relating to TSC that you may hear or read about.