unsinkable Posted January 23, 2012 Author Share Posted January 23, 2012 No, the medical people do not feel like they found an answer, which is why therre is going to be more testing. Just because the small town Drs they are seeing don't think it's anything but a conversion disorder, doesn't mean soneone out there can't find what's wrong. Cripes, I can't tell you how many times I've had to go to different Drs until I found out what was wrong with my kids. One told me it was lesions on the brain, a prominent NYC neurologist told me it was nothing he could find, and then another pediatric neurologist told me he didn't know (at least he was honest). Then I went to ANOTHER pediatric neur, and HE finally told me. Then, when we went to a pediatric developmental neurologist it got fun. It's called a nystagmus, which is MY genetically mutated albino gene I get from my father. But hey I should have just stopped at lesions on the brain, right? So, you're saying just stick with one or two opinions because they're right. Wrong. Not the way to do it. I think I'll bow out now becuase I actually don't get where the sarcasm and smarminess are coming from. And it doesn't even seem like you are responding to what I wrote. Quote Link to comment Share on other sites More sharing options...
Lovin Learnin Posted January 23, 2012 Share Posted January 23, 2012 I'm more of the opinion that physical symptoms often bring on emotional stress, they don't usually cause them. Especially undiagnosed, severe symptoms like the ones these girls are suffering. Quote Link to comment Share on other sites More sharing options...
justamouse Posted January 23, 2012 Share Posted January 23, 2012 I think I'll bow out now becuase I actually don't get where the sarcasm and smarminess are coming from. And it doesn't even seem like you are responding to what I wrote. It's right in the first sentence. Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted January 23, 2012 Share Posted January 23, 2012 I can totally understand the parents not treating their kids yet. Maybe the doctors have used the term, "Well it COULD be," or, "It doesn't fully meet the criteria for XXX but...." Those are all things I've heard on my search for answers for dd12. We've now been to 13 doctors, going to a 14th this week, and a 15th and 16th in the next couple of months. This over a period of 8 years. We've been told she had a heart condition (she doesn't), a brain abnormality (no brain abnormality), seizures (none, but it is possible that maybe she had seizures at age 5, then at age 7.5, then no more, we will never know), and on and on and on. I can't even begin to tell you how many diagnosis' have been thrown at us. I can't tell you how many times she got a diagnosis without proper medical testing, then the doctors giving me a script to fill. I never did. I'd go home, do my research on the condition, then I'd feel confident it wasn't what she was dealing with. The doctors actually would take offense when I wouldn't blindly trust them and just pop pills down her throat. Every single dignosis she's gotten to date has been inaccurate. I'm so glad I just didn't blindly trust some doctor and medicate her. I followed my gut each and every time. Doctors don't like patients like me, or a parent like me. I do my research. I question. If I don't feel confident that's what we're dealing with, we don't medicate. It's been the right choice for eight years so far. I'm not against medication. I just need a proper DIAGNOSIS first.:glare: So I definitely understand not medicating those girls yet, especially when the parents aren't confident with the diagnosis. Didn't I read that somewhere? I know I heard that, maybe it was here? Quote Link to comment Share on other sites More sharing options...
unsinkable Posted January 23, 2012 Author Share Posted January 23, 2012 I'm more of the opinion that physical symptoms often bring on emotional stress, they don't usually cause them. Especially undiagnosed, severe symptoms like the ones these girls are suffering. It might be a cycle that keeps going 'round and 'round with these girls, no matter it started with. Physical exacerbate emotional, lather, rinse, repeat. Or vice versa. Quote Link to comment Share on other sites More sharing options...
TracyR Posted January 23, 2012 Share Posted January 23, 2012 I just hope they figure it out soon. The whole conversion disorder idea creeps me out. One girl...maybe. Eleven? Nope. I would hate to be suffering this disorder and have everyone looking at me saying it was psycosomatic. I know they have had doctors and psychologists examine these girls but since when are they infallible? It took 12 years from the start of symptoms for me to get my IBD diagnosis. TWELVE. Seven of those years I had full blown symptoms and the last six months were life threatening. What makes matter worse is that my father had the same disease, so there was no reason to miss it or at least consider it. Doctors make mistakes. These girls are suffering. Someone needs to think outside the box and look harder. :iagree: Totally agree. Having a child and even myself with health issues I see this WAY, WAY to often. Doctors today especially older doctors don't think outside of the textbook they studied with in college. Most ( not all) don't have the ability to think past that. And I think these girls are victims of that. Doctors not having the ability to think outside of the box and get serious and try to figure out what in the world is going on with them. Something is going on and I don't think it was from anything they ingested at a party. If they even went to a party at all. I do hope that these parents keep looking for the answer, and go elsewhere in the meantime for it. Its so easy for doctors today to say its psychosomatic and then throw you on pills or totally ignore serious problems to begin with. Not surprising in the least. Quote Link to comment Share on other sites More sharing options...
Perry Posted January 23, 2012 Share Posted January 23, 2012 BTW, when you agree with me in the other thread, I felt like the popular girl had asked me to eat lunch with her. :D It's the little things that make my day... Aww, thanks. :blushing: I'd love to have lunch with you! But I'm over here at the outcasts' table.... Quote Link to comment Share on other sites More sharing options...
AngieW in Texas Posted June 9, 2013 Share Posted June 9, 2013 I know this is an old thread, but I just read an article today about how it is still going on: http://www.dailymail.co.uk/femail/article-2322793/Inside-town-caught-Tourettes-New-documentary-charts-fear-panic-suspicion-teenage-girls-families-afflicted-mystery-syndrome.html I haven't been able to find the documentary though, only a trailer for it. Quote Link to comment Share on other sites More sharing options...
unsinkable Posted June 9, 2013 Author Share Posted June 9, 2013 Wow, this thread brings back some horrible memories. Angie, Within this article, a doctor who treated 14 of the girls for conversion disorder stated that they have all recovered. http://abcnews.go.com/Health/girl-tics-bucks-doctors-blames-lyme-disease/t/story?id=19128125 Page 2, last paragraph in the first column. Also, this article from NY times magazine http://www.nytimes.com/2012/03/11/magazine/teenage-girls-twitching-le-roy.html?pagewanted=all&_r=0 from 2012 has a lot of information about the stress that some of the girls with the tics were experiencing. And one more blog post with links to other articles http://www.skepticalraptor.com/skepticalraptorblog.php/updates-leroy-mystery-neurological-illnesses/ Quote Link to comment Share on other sites More sharing options...
Rivka Posted June 10, 2013 Share Posted June 10, 2013 I am glad to hear that the girls treated for conversion disorder recovered. It doesn't surprise me at all - from the outset, everything I read made it seem like a textbook case of conversion disorder and mass psychogenic illness. Quote Link to comment Share on other sites More sharing options...
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