I have become aware that my son might have a disease called tuberous sclerosis which could have caused his autism. He has several signs of this disease. I know it's possible that all of his symptoms could be occuring independent of each other and not be this disease, but I'm going to have him tested to either rule in out or to confirm. In my research, I have discovered that both Austrialia and Canada test children who have been diagnosised with autism for tuberous sclerosis as a routine procedure to rule it in or out. Why is this not standard in the US???Answer Question
Answer by Anonymous at 3:52 PM on Jul. 24, 2010
Answer by delilahsmom1177 at 3:59 PM on Jul. 24, 2010
Answer by delilahsmom1177 at 4:10 PM on Jul. 24, 2010
Answer by SabrinaMBowen at 6:07 PM on Jul. 24, 2010
Answer by missanc at 8:16 PM on Jul. 24, 2010
I will definitely have to discuss this with my daughter's pediatrician, and take her to the local developmental pediatrician for further evaluation after I've googled this. How strange to read this post, and then read your (OP) last comment about other medical issues that our children may have had---my dd has had a seizure disorder, minor skin issues as well as extensive dental work. This definitely warrants a discussion with her doctor. Thanks for the info!
Answer by jsbenkert at 3:08 PM on Jul. 25, 2010
I just googled "tuberous sclerosis" and this is what I found: http://www.bing.com/health/article/mayo-126704/Tuberous-sclerosis?q=tuberous+sclerosis&qpvt=tuberous+sclerosis. I feel pretty sure that my child with ASD does not have TS. She did have a seizure disorder, as well as some of the other symptoms, but she's had a few MRI's for different issues, as well as fairly extensive genetic testing, and nothing out of the ordinary has shown up. However, it is something worth investigating for those whose children exhibit some or all of these issues. I think that the reason this isn't a routine test in the US is because TS is a relatively rare disorder, and we do everything we can to keep medical costs "low"(supposedly, anyway) , like refusing many routine testing for illnesses.
Answer by jsbenkert at 3:13 PM on Jul. 25, 2010