The condition tuberous sclerosis is caused by a gene mutation, specifically the TSC1 or TSC2 genes. It is characterized by the development of tumors in various areas of the body including the brain, skin, eyes and heart amongst others. While it is a devastating diagnosis for parents of young children with tuberous sclerosis, there are many ways that living with the disease can be made easier and ways that it can be treated too.

Because tuberous sclerosis involves the growth of tumors in various places in the body they can in turn cause a wide variety of symptoms. Seizures are common due to tumors in the brain, as is autism and a range of learning difficulties. Those with tuberous sclerosis might also experience renal cysts, the growth of cysts within the lungs which replace the part of the lunch which functions well, various skin rashes and discolorations, swelling of the optic disk, heart murmurs and arrhythmia amongst others.

Unfortunately, at present there are no medications available that treat tuberous sclerosis as a whole disease. Because some of the symptoms are particular harmful to the growing bodies of infants and young children however, there are several types of medication available that will help to manage the individual symptoms caused by the disease. Anti-epileptic drugs are amongst some of the more important and with the use of this kind of medication babies and children with tuberous sclerosis often go on to lead good quality, long lives.

One thing that is essential for children with tuberous sclerosis is a good network of doctors and specialists who are ready to help and well qualified for the job if the condition were to change or progress. If there is something you are not happy with the first time you visit your child's doctor about their tuberous sclerosis then it is important that you sort it out as soon as possible so that their quality of treatment improves immediately, rather than a year down the line when the situation gets critical.

Secondly, children with tuberous sclerosis often have learning difficulties and physical disabilities that may mean they can't attend mainstream school, or they need to have different lessons from other children. In this case it's important to explore your options. Are you able to home school? Perhaps certain school offer a higher degree of special needs trained staff. You may also want to offer your child a high level of education at home and as a result may need to learn Makaton (a language similar to sign language) to communicate easily or develop their communication faster than it might without.

Of course these are just two of things that are important to sort out when you get a definite diagnosis of tuberous sclerosis in one of your children, but they are also very important. Try to join tuberous sclerosis charities in your area of country and also talk to your doctor and specialist about what you can do to easy your child's symptoms and make caring for them as easy and straightforward as possible.

Stan Tian

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