Many people with Tuberous Sclerosis have normal intelligence, but some children dobegin to show developmental delay when their seizures start and as they grow older it sometimes becomes clear that they are not keeping up with other children of their age in certain areas of development. Speech and communication are particular areas which may need help as early as possible. Special Education, play groups, toy libraries, speech therapy and physiotherapy can all help children achieve their full potential. Social workers, occupational therapists and other health professionals can all give advice and information, and the New Zealand Tuberous Sclerosis Support can also be a source of help, advice and encouragement. People can have TS without any symptoms, and it is most important for the parents and siblings to find out whether or not they also carry the TS gene because anyone with this gene has a 1 in 2 chance of passing it on to any child they might have.
Genetic counselling is available in New Zealand.
As yet there is no definitive test available for diagnosing TS in the unborn baby. Occasionally echocardiography of the baby's heart during mid-pregnancy provides evidence of the heart lesions sometimes found in TS, but this gives no indication as to whether the baby will have developmental delay. Genetic research in TS is progressing well, and since finding one of the two genes responsible for TS, doctors are hopeful that a blood test for the condition will be developed within the next few years. Most people are devastated when they learn that a member of their family has Tuberous Sclerosis. They have usually never heard of the condition before and feel totally isolated with their fears.