The Terrors of TSC

Things in our corner of the woods have been crazy lately. Yes, it’s that time of year again. The time when Mia has to undergo more testing than most people will ever have to deal with in their lives. This is the year that she has to have an image of her brain done to make sure there are no tumors or additional tubers growing. In addition, she has to be imaged for tumors on her kidneys, heart, and lungs.
Her first few onslaught of imaging was hard for me. She was an infant when she had her first MRI’s and Catscans. Because she was so young, she had to be sedated for the imaging. Giving her this medicine scared the crap out of me, but it didn’t have any adverse affect on her. But when it became apparent as she got older that she would need to be sedated for nearly everything because of her delays in development, and because of how tactile she is, the thought of these medicines scared me even more.
There was just no way that I could grow accustomed to the idea of sedating her several times a year for testing. Call me crazy, but that much of that type of medicine can not be good for anyone, let alone a child. I begged and pleaded with doctors to get together at the same time to do the needed tests, so the amount of medication she received could be lessened.
Instead of making it easy, I got the usual run around about how doctors can’t go to other departments with machines that don’t belong there….blah, blah, blah.
This year though, with constant nagging, I finally convinced her doctor that it should, and COULD, be done at the same time. He has seen her multiple times now, and knows Mia has arrived as soon as she walks in the building. Yes, by her cries of despair about being at the doctors office again. (Though she is actually getting much better about it!) He has seen how hard it is for her to have even a stethoscope touch her, let alone getting her to sit still for a goopy messed ultrasound. He agreed that having everything done at the same time would not only be easier on her, but also ensures that we get good clear images of everything needed.
It took a few weeks to get everything coordinated, but it’s scheduled for tomorrow. Now, it’s my turn to prepare, to calm my nerves and my thoughts, and to get ready for a day in the hospital. I always worry about having to give her the sedation medication, and the possibilities of tumors popping up, even in between all of these tests. But when it comes time to wait for results, the worries grow fast and furiously, and I often find myself kind of in a state of despair when wondering what the outcome will be.
Mia and I are lucky so far when it comes to our lives with TSC. She has several Cortical Tubers on the surface of her brain, some small ones in her heart (which I was told would come and go and that it was nothing to worry about) and some tumors on her kidneys. I have one Cortical Tuber and tumors on my kidneys as well. Neither of us have had any other tumors pop up, and we haven’t needed any surgeries. In the way of TSC, we are healthy.
Still though, I worry. I worry because it’s difficult to know what is physically happening to a child, let alone a child, who at nearly six years old, still isn’t talking. I worry because with TSC, at any point and time a tumor can form, and can grow into a problem that requires surgery. Not because they are cancerous, but because the gene that suppresses tumor growth is defective, and that system doesn’t have the ability to tell the body to stop it. Tumors in the brain can grow so large that they can block spinal fluid flow. Tumors in the heart can cause abnormal rhythms and block blood flow. Tumors in the kidneys can grow so large that they stop the normal function causing kidney failure. And these are only some of the possible problems with TSC. (See why I worry constantly?)
But, with good monitoring, these problems can usually be stopped before they become life threatening. It’s been a struggle (to say the least) to get all of these tests lined up here in Maine. With more tests than just the ones mentioned here needed, we have literally had to travel the state for appointments. That’s one of the biggest reasons why awareness of TSC is so important. When people know about TSC, and what is required in the way of medical intervention, it can make things easier for the individual and the people that support them to get all of the services they need in one place. Let’s face it, you wouldn’t want to be going to a doctor every other week for another test, now would you?
Here’s hoping for another round of good results from this years testing, and another year of good health for my little Mia!