My vacation is quickly coming to an end and we are trying to get in as many doctor appointments as possible. Luke had a echo and cardiology appointment today. At birth he spent 9 days in the NICU because of SVT of the heart. Because of this along with his seizure and asthma meds. he has been on heart medication to regulate his heartbeat. Before he was born we did a fetal echo, knowing that TS can cause tubers in the heart. It turned out he did have two tubers, but they did not seem to be in an area that would affect the flow of blood. We do not know if they are the cause of the SVTs or not since he could have still had the SVT condition without the growths. Thankfully the growths appeared to have gotten a little smaller. This is to be expected since the heart is the one place in the body the tubers seem to stop growing after 6 months of age and can possible shrink. The cardiologist said that the tubers look the same but because Luke's heart has grown they do appear smaller. Lisa pointed out to me that this is a really good thing, since medically we don't tend to follow the norm. The doctor talked about weening Luke off of the heart medication but feels it would be better if he was on it for another year. Since our seizures are far from controlled, the cardiologist does not want to to risk the SVTs coming back while we are still fighting the seizures. Overall, it was a good day, despite sitting at the hospital for most of the day. We take the good news when we can get it.
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