Tuberous Sclerosis Complex is a genetic disorder that causes benign tumors to grow on vital organs. When they grow in the brain, as they are for Firecracker, they cause seizures. They can also grow on the kidneys, lungs and heart, and the skin is usually involved as wel. "Benign" is something of a misnomer, since they can disrupt organ function just by being there. The specialist is pretty certain that Firecracker has TSC. In fact, when he examined all the films again with a neuroradiologist, he found 4 lesions, not the 2 he originally told us about. Unless there is a compelling reason not to, she will have brain surgery to remove the lesions. And she will have to have her other organs scanned to make sure they are clear.
There's no cure for this stupid disease, and there's no way to predict its course. It can cause just a few problems or it can endanger your life. All the information I've read states that TSC patients live a normal life span, at least statistically, but just how disabled they might be during that lifespan is unknowable. Some children are autistic and some severely retarded. Firecracker is neither of those, but the lesions are causing seizures, learning delays, and behavior issues.
We're waiting for the results of a genetics test. That will take 2 months. Because it's a genetic mutation, any children Firecracker has could also have the disease.
Dear Husband thinks I'm in denial, that I'm not here, because I'm not constantly in tears. I think I feel more fear than sadness. A kind of cold, clawing fear that has settled into my stomach. It makes me tense and then tired, waiting to find out when, how, what next.