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4 Bumps

Why isn't this standard in the US???

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???

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layh41407

Asked by layh41407 at 3:51 PM on Jul. 24, 2010 in Kids' Health

Level 36 (79,415 Credits)
Answers (11)
  • because we are in denial
    Anonymous

    Answer by Anonymous at 3:52 PM on Jul. 24, 2010

  • On the website I discovered in Canada, it says that Fragile X is the leading cause of autism and tuberous sclerosis is the second leading cause. They know this because they test for these disorders when the child is presenting as having autism. This might clear some things up for US citizens fighting this disorder
    layh41407

    Comment by layh41407 (original poster) at 3:55 PM on Jul. 24, 2010

  • layh, because so many people want to blame everything on man made things not nature. Autisum has always been around/ People just weren't diagnoesed with anything but mental retardation in the past! Autisum is not new and ot because of vaxing and people need to wake up! THANK YOU for posting this!!!
    delilahsmom1177

    Answer by delilahsmom1177 at 3:59 PM on Jul. 24, 2010

  • I never thought his autism was caused by vaccines. I found out after he was diagnosed that several people in my ex husband's family were on the ASD spectrum. I have always felt it was genetic. I was also lucky. I never had this wonderfully happy child that one day wasn't 'there' any more. My son has always been developmentally delayed and then we discovered that the reason for that was autism. Now, it maybe something more.
    layh41407

    Comment by layh41407 (original poster) at 4:05 PM on Jul. 24, 2010

  • layh, I wasn't saying you! I was just saying most. It is great that you feel lucky you didn't "loose" your child. I know someone who did. Her little girl was a fun loving little girl until 3. She shut down completly! Luckly my friend found a great school and now her DD is almost 7 and she is almost back to her old self.Running around even was in the school play(the vid on FB was awesome) You are very right though that something HERE needs to be done! Why is it the other laces lets herlp our kids! Autism can be overcome! I have a feeling you know that though and that you are a wonderful mommy!
    delilahsmom1177

    Answer by delilahsmom1177 at 4:10 PM on Jul. 24, 2010

  • I think a large part of the reason is because the US medical community doesn't want to admit that there may be something which causes Autism... They are so in to this attitude of "Autism is genetic" as a way to crush all these other answers and reasons they don't want to look at anything else. It's the same reason children diagnosed with Autism aren't checked for Mercury Poisoning - which causes almost identical symptoms...
    SabrinaMBowen

    Answer by SabrinaMBowen at 6:07 PM on Jul. 24, 2010

  • I think it depends on where you take your child. When my oldest was diagnosed we took him to a developmental pediatrician who tested his blood for all types of things. Nothing atypical showed up on the blood tests, but at least we knew that there was nothing further we could do medically. It just depends on how far parents are willing to go to fight for their children.
    missanc

    Answer by missanc at 8:16 PM on Jul. 24, 2010

  • This disease can not be detected by a blood test. I've taken him to specialist. He's had blood test. No one mentioned this disease and I've never heard of it until I was watching Rachel Ray (of all things). If your child has autism and they don't have Fragile X and you have not had the extensive testing for tuberous sclerosis, there might be some things you should be doing medically. This is why I am so irritated right now that no one mentioned this disease to me. My son may have been suffering from this disease for 11 years and no one said anything abou this being a possibility. I've been fighting for him, but how can I insists on tests for a disease I never knew existed.
    If you child has autism and has seizures, or skin issues (including white spots and rashes ), dental issues or all of the above, Please take them back to your 'developmental pediatrician' and insist on the extensive testing for tuberous sclerosis.
    layh41407

    Comment by layh41407 (original poster) at 7:38 AM on Jul. 25, 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!

    jsbenkert

    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.

    jsbenkert

    Answer by jsbenkert at 3:13 PM on Jul. 25, 2010

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