LisaKinVA Posted January 26, 2012 Share Posted January 26, 2012 Apparently, the NIH is starting to investigate, and Erin Brokovich is getting involved. Article from Gizmodo here. Apparently, 2 more cases have appeared 250 miles away, and now a boy has come down with it. The first girl was dx'd as Tourettes... article goes on to say that "some" doctors believe it to be Conversion Disorder, meaning that some don't. But whatever it is, there is enough uncertainty that NIH is getting involved. I hope they figure it out soon, and the girls (and boy) get help. Quote Link to comment Share on other sites More sharing options...
goldberry Posted January 26, 2012 Share Posted January 26, 2012 That's freaky....I'd be scared if I lived there. Quote Link to comment Share on other sites More sharing options...
Lolly Posted January 26, 2012 Share Posted January 26, 2012 I have two children who have had tics. Ds had Tourette's. It showed up shortly after K aged vaccines. That is also the normal age for symptoms to show. Most of his tics have disappeared as the average age also. I will always wonder... Dd has a specific tic that showed up when she had to handle very old blueprints at work. It happened every time she touched one and went away after a shower and a little time passed. After receiving a booster for cp, she started the same tic. The doctors said it was a neurological reaction to the vaccine. I think she is reacting to a preservative that was also used in the old blueprints. These cases just remind me so much of my two children's experiences. I doubt we will ever know. Dd will never have another vaccine. Ever. I am terrified to have ds have anymore, but he hopes to join the military. I am bracing myself to try to get him caught up starting this summer. I am very much afraid, but I had rather do it with time between them than all at once. Quote Link to comment Share on other sites More sharing options...
DarlaS Posted January 26, 2012 Share Posted January 26, 2012 I was wondering when this was going to pop back up again. I doubt very many people bought that explanation. I sincerely doubt this is Tourette's. I've never heard of Tourette's slamming someone out of the blue like that--never mind several at once. Tourette's is also more common in boys (like three or four times more common in boys). So, we have teenagers (older than typical age) and, except for one kid, GIRLS. Quote Link to comment Share on other sites More sharing options...
frugalmama Posted January 26, 2012 Share Posted January 26, 2012 I am glad they are beginning to look into it, as I don't really think it is tourettes either. Something is causing it, and they need to find it before it spreads further. Quote Link to comment Share on other sites More sharing options...
LisaKinVA Posted January 26, 2012 Author Share Posted January 26, 2012 Only one girl was dx'd with Tourette's... no one else. Quote Link to comment Share on other sites More sharing options...
Kathryn Posted January 26, 2012 Share Posted January 26, 2012 I've not followed this story at all, but I just clicked on it to see where this was. I have a friend whose two children (ages 6 and 4) were diagnosed with Tourette's a few months ago. They live in northeastern Ohio, up above Cleveland. They're two hundred miles away, but a straight shot down Lake Erie. Strange. Quote Link to comment Share on other sites More sharing options...
justamouse Posted January 26, 2012 Share Posted January 26, 2012 The beginning casual dismissal of it pissed me off. If that one mother didn't start being a squeaky wheel, this never would ahve gotten attention. God give them strength. I've not followed this story at all, but I just clicked on it to see where this was. I have a friend whose two children (ages 6 and 4) were diagnosed with Tourette's a few months ago. They live in northeastern Ohio, up above Cleveland. They're two hundred miles away, but a straight shot down Lake Erie. Strange. I would call her and tell her to keep her ears open. Just in case. Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted January 26, 2012 Share Posted January 26, 2012 I did not buy into the idea of conversion disorder, at all. I hope they get this figured out for real. Quote Link to comment Share on other sites More sharing options...
helena Posted January 26, 2012 Share Posted January 26, 2012 The linked video is hard to watch. :sad: I have no idea what is going on with all these kids, but to me it looks like the girl in the vid. has Tourettes. Both of my girls have TS. One of them (the 2nd to get it) was hit hard and suddenly. Totally devastating. I've seen people mention here that maybe they all took some kind of drug that was a bad batch... It made me think of a news story from the 80s where a bad batch of heroin paralyzed a bunch of people. I think this is what I'm remembering: http://www.time.com/time/magazine/article/0,9171,141542,00.html http://en.wikipedia.org/wiki/MPTP#Discovery_in_users_of_illicit_drugs Quote Link to comment Share on other sites More sharing options...
4everHis Posted January 26, 2012 Share Posted January 26, 2012 In their earlier 'talks' doctors/scientists said that clusters of cases like this happen more often than we think. Is there a way to find out WHERE more of these clusters are? Hard for me to imagine, with the social media we have, that others wouldn't be speaking up wherever it's happening. Quote Link to comment Share on other sites More sharing options...
AngelBee Posted January 26, 2012 Share Posted January 26, 2012 Scary! Quote Link to comment Share on other sites More sharing options...
SJ. Posted January 26, 2012 Share Posted January 26, 2012 I have two children who have had tics. Ds had Tourette's. It showed up shortly after K aged vaccines. That is also the normal age for symptoms to show. Most of his tics have disappeared as the average age also. I will always wonder... Dd has a specific tic that showed up when she had to handle very old blueprints at work. It happened every time she touched one and went away after a shower and a little time passed. After receiving a booster for cp, she started the same tic. The doctors said it was a neurological reaction to the vaccine. I think she is reacting to a preservative that was also used in the old blueprints. These cases just remind me so much of my two children's experiences. I doubt we will ever know. Dd will never have another vaccine. Ever. I am terrified to have ds have anymore, but he hopes to join the military. I am bracing myself to try to get him caught up starting this summer. I am very much afraid, but I had rather do it with time between them than all at once. A little OT but I wanted to ask if you were told your ds had to be caught up with vaccines before joining. I remember at bootcamp we received vaccine boosters for everything. They were not interested in seeing anyone's vaccine record - everyone received everything. Quote Link to comment Share on other sites More sharing options...
maddykate Posted January 26, 2012 Share Posted January 26, 2012 My nephew was 13 last year when he was suddenly hit with something very, very similar to Tourettes. The doctors never knew what it was exactly, but treated him as if it was Tourettes. He is doing slightly better now, but is still struggling and is on some serious, high-powered drugs. It is so scary. His tic was that he would gag nonstop. He did it for months before they found a drug to help slow them down. He is in central KY. Quote Link to comment Share on other sites More sharing options...
Lisbeth Posted January 26, 2012 Share Posted January 26, 2012 This is so scary. I think it is obviously something in the environment. Quote Link to comment Share on other sites More sharing options...
MamaBearTeacher Posted January 26, 2012 Share Posted January 26, 2012 Does anyone else feel that the press should be doing a better job at investigating what may have caused this? They just post those doctors who believe it is conversion disorder but most people don't believe that. Should they not look for a better explanation? Quote Link to comment Share on other sites More sharing options...
magnificent_baby Posted January 26, 2012 Share Posted January 26, 2012 A little OT but I wanted to ask if you were told your ds had to be caught up with vaccines before joining. I remember at bootcamp we received vaccine boosters for everything. They were not interested in seeing anyone's vaccine record - everyone received everything. I was thinking about this as well. My DH said they hit you with several all at once regardless of what you have already had. This of course was many years ago, the policy may have changed. I tried looking it up, and it looks like there are at least a few that are given no matter if you have had them already. Quote Link to comment Share on other sites More sharing options...
trailofsparks Posted January 26, 2012 Share Posted January 26, 2012 It would be interesting to know their vaccination histories, especially Gardasil. Quote Link to comment Share on other sites More sharing options...
In the Rain Posted January 26, 2012 Share Posted January 26, 2012 A little OT but I wanted to ask if you were told your ds had to be caught up with vaccines before joining. I remember at bootcamp we received vaccine boosters for everything. They were not interested in seeing anyone's vaccine record - everyone received everything. I was thinking this too. When dh was in the Navy Reserves they "couldn't locate" his records (from the Naval Academy and service) and gave him 5 shots at once. We had a baby at home who we were selectively vaccinating on a delayed schedule. I totally freaked! :lol: Quote Link to comment Share on other sites More sharing options...
Lolly Posted January 26, 2012 Share Posted January 26, 2012 A little OT but I wanted to ask if you were told your ds had to be caught up with vaccines before joining. I remember at bootcamp we received vaccine boosters for everything. They were not interested in seeing anyone's vaccine record - everyone received everything. I haven't actually looked anything up. Just assumed that they would use records. Actually, it makes more sense to just give them all everything. Maybe I should just wait!:tongue_smilie: Quote Link to comment Share on other sites More sharing options...
houseofkids&pets Posted January 26, 2012 Share Posted January 26, 2012 I posted a few times on the initial thread about this group of girls. We live about 30 minutes away from Le Roy. It seems like there has been a lot of conflicting information in the media. Doctors are saying everyone is being treated and they are improving. Environmental causes, drugs, etc. were all ruled out. However, some parents spoke publicly to say that they were never really told a cause. Symptoms were being treated without knowing what actually started all of this. Finally, the medical professionals came forward and said the students were suffering from conversion disorder (for quite awhile, doctors weren't saying anything about a diagnosis due to hippa). Who knows what to believe. BTW, this group of girls started demonstrating symptoms sometime last year, but it wasn't publicly reported until November. There was an update in our morning paper stating that the "mystery cluster" grows by 3. Three more students are being evaluated right now by neurologists in Buffalo, NY and, one of them is rumored to be a boy. The Le Roy school superintendent did acknowedge a few new possible cases, but again stated that all of the earlier testing has ruled out environmental contaminants or infections. Two other teenage girls from another county also came forward with similar symptoms. The only connection they have to Le Roy is eating lunch there one day last summer. The state health department is not currently looking into these cases, so it sounds like they don't feel they are related. Quote Link to comment Share on other sites More sharing options...
SweetMissMagnolia Posted January 27, 2012 Share Posted January 27, 2012 maybe they will get answers soon.... Quote Link to comment Share on other sites More sharing options...
LisaKinVA Posted January 27, 2012 Author Share Posted January 27, 2012 Another Gizmodo article...this one focuses on the angle Erin Brokovich is following (environmental spill from the 1970's in the area). Quote Link to comment Share on other sites More sharing options...
justamouse Posted January 27, 2012 Share Posted January 27, 2012 Another Gizmodo article...this one focuses on the angle Erin Brokovich is following (environmental spill from the 1970's in the area). Whoa. If that testing comes up positive...the generations of kids that went to that school... Quote Link to comment Share on other sites More sharing options...
Rivka Posted January 27, 2012 Share Posted January 27, 2012 Did the other teenagers develop symptoms after coverage of the initial cases hit the press? Because if so, that doesn't rule out hysteria at all. Quote Link to comment Share on other sites More sharing options...
angela in ohio Posted January 27, 2012 Share Posted January 27, 2012 It would be interesting to know their vaccination histories, especially Gardasil. Previous stories said that not all of the girls have had the Gardasil vaccine, and it has been ruled out. Quote Link to comment Share on other sites More sharing options...
angela in ohio Posted January 27, 2012 Share Posted January 27, 2012 Another Gizmodo article...this one focuses on the angle Erin Brokovich is following (environmental spill from the 1970's in the area). And it only effects girls because....? Does she have an answer? Quote Link to comment Share on other sites More sharing options...
justamouse Posted January 27, 2012 Share Posted January 27, 2012 And it only effects girls because....? Does she have an answer? A boy has been diagnosed. Quote Link to comment Share on other sites More sharing options...
angela in ohio Posted January 27, 2012 Share Posted January 27, 2012 A boy has been diagnosed. The article said that one boy has reportedly been diagnosed. But why mostly girls in Leroy? The odds against that are staggering, as someone shared in a previous thread. Quote Link to comment Share on other sites More sharing options...
KatA Posted January 27, 2012 Share Posted January 27, 2012 A little OT but I wanted to ask if you were told your ds had to be caught up with vaccines before joining. I remember at bootcamp we received vaccine boosters for everything. They were not interested in seeing anyone's vaccine record - everyone received everything. I enlisted in the Air Force in '03, and they followed your vaccine records, I only needed a few boosters. But if I recall, I was one of the lucky ones, they divided you into groups by what you needed. I was in a small group that only needed a few, many had to get everything. Make sure they have up to date records. Quote Link to comment Share on other sites More sharing options...
SJ. Posted January 27, 2012 Share Posted January 27, 2012 I enlisted in the Air Force in '03, and they followed your vaccine records, I only needed a few boosters. But if I recall, I was one of the lucky ones, they divided you into groups by what you needed. I was in a small group that only needed a few, many had to get everything. Make sure they have up to date records. I enlisted in the USMC in 98. Perhaps this policy has changed or this is a difference in the services. Quote Link to comment Share on other sites More sharing options...
KatA Posted January 27, 2012 Share Posted January 27, 2012 Probably. And it is the AF... I distinctly remember the sense of relief and the looks of jealousy as everyone else had to sit and wait. :tongue_smilie: Quote Link to comment Share on other sites More sharing options...
Punchie Posted January 27, 2012 Share Posted January 27, 2012 I enlisted in the USMC in 98. Perhaps this policy has changed or this is a difference in the services. Not that it was a long time after you, but I enlisted in the USMC in 2000. It was also an "everyone got everything". Quote Link to comment Share on other sites More sharing options...
beaners Posted January 27, 2012 Share Posted January 27, 2012 Another Gizmodo article...this one focuses on the angle Erin Brokovich is following (environmental spill from the 1970's in the area). It seems like that article doesn't have enough information for any of us to evaluate. Quote Link to comment Share on other sites More sharing options...
LisaKinVA Posted January 27, 2012 Author Share Posted January 27, 2012 No, there isn't a lot of information (testing, how kids were exposed, why some kids would be affected, and not others...etc.). I posted the first article because of the additional cases turning up (further away... and the boy), and the NIH getting involved. I think it's really a bit early for Erin Brokovich to be making a claim (I don't think the soil samples are even back, yet), but perhaps her point was that something DID happen in that area, and the timeframe was such that it *could* have something to do with the problem...vs. the blanket "we've ruled everything out, so environmental factors can't be at play... that we've gotten from the school/county. I know environmental factors don't affect everyone equally, either...I haven't ruled out conversion disorder from the realm of possibility, but the fact that all the girls haven't been dx'd, and that the doctors don't seem to agree, and that NIH has opened an official investigation, and Erin Brokovich, et. al. are investigating is enough to tell me there may be a lot more to the story than officials have led us to believe. Quote Link to comment Share on other sites More sharing options...
TranquilMind Posted January 27, 2012 Share Posted January 27, 2012 I have two children who have had tics. Ds had Tourette's. It showed up shortly after K aged vaccines. That is also the normal age for symptoms to show. Most of his tics have disappeared as the average age also. I will always wonder... Dd has a specific tic that showed up when she had to handle very old blueprints at work. It happened every time she touched one and went away after a shower and a little time passed. After receiving a booster for cp, she started the same tic. The doctors said it was a neurological reaction to the vaccine. I think she is reacting to a preservative that was also used in the old blueprints. These cases just remind me so much of my two children's experiences. I doubt we will ever know. Dd will never have another vaccine. Ever. I am terrified to have ds have anymore, but he hopes to join the military. I am bracing myself to try to get him caught up starting this summer. I am very much afraid, but I had rather do it with time between them than all at once. That's really interesting. I think it is something environmental for sure. Quote Link to comment Share on other sites More sharing options...
houseofkids&pets Posted January 27, 2012 Share Posted January 27, 2012 Here's an update from our morning paper. It actually made the front page now instead of being tucked in back with the other local news. There are other national environmental groups involved now, not just Erin Brockovich (Sierra Club; The Healthy Schools Network; Empire State Consumer Project; and "others" as per the article). Leaders of these groups are saying that N.Y. may have acted too hastily in ruling out environmental contaminants, infectious illnesses, or vaccinations as possible causes. A neurologist in Buffalo, NY, who has been seeing some of these children still says that the teens suffer from a psychological disorder which causes physical symptoms that spread unconsciously through the student body. However, another neurologist who is not from our area stated that she feels the students could be suffering from a syndrome in which tic disorders can be triggered by staphylococcus bacteria or other infectious germs. Some families are now going to meet with this doctor. According to an official at the State Health Department, most of the girls affected did not get the HPV vaccine Gardasil. In addition, the fact that there is a lack of symptoms in the staff and male students indicates to the DOH that the cause could not be an air borne contaminant (air testing has been completed and is negative). Environmental groups disagree and feel that there has not been thorough testing. They are questioning the five natural gas wells that ring the junior and senior high building since these wells have undergone the fracking process (fracking is a HUGE debate in our area right now). Other schools districts in NY own gas wells, but none are as active as those in Le Roy. There are also on-going rumors that contaminated soil from a train derailment back in the 1970's (trichloroethylene) had been used on the school grounds when it was being built. I'm sure there will be more info as these groups start arriving in our area. FYI, Le Roy, NY is the birth place of Jello. They actually have a Jello Museum(or at least they used to), but I have never visited it. Quote Link to comment Share on other sites More sharing options...
angela in ohio Posted January 27, 2012 Share Posted January 27, 2012 They are questioning the five natural gas wells that ring the junior and senior high building since these wells have undergone the fracking process (fracking is a HUGE debate in our area right now). Other schools districts in NY own gas wells, but none are as active as those in Le Roy. Interstingly, Brokovich has sued a school for oil wells before: Time article. Brokovich lost, and the school sued and won its legal costs back, according to Wikipedia. I'd still like to hear Brokovich deal with the gender issue. :confused: Quote Link to comment Share on other sites More sharing options...
hearts4homeschooling Posted January 28, 2012 Share Posted January 28, 2012 FWIW, I know of a family whose son (about 13 at the time) was diagnosed with Tourette's. His mother had him tested for allergies. He was allergic to corn. When she removed all traces of corn from his diet, his symptoms went away. If he ate even a tiny bit, they came back. Quote Link to comment Share on other sites More sharing options...
houseofkids&pets Posted January 28, 2012 Share Posted January 28, 2012 The thing is with this situation, the cluster has now grown to 15 children, so I don't know if that could be allergy related. It was stated that one of the newest students to come forward with symptoms is male, but it has not been officially confirmed. For quite some time, the group has been only girls. No female staff have reported being ill. Interesting about the law suit that Brockovich lost re: oil wells. Quote Link to comment Share on other sites More sharing options...
In2why Posted January 28, 2012 Share Posted January 28, 2012 I enlisted in the Air Force in '03, and they followed your vaccine records, I only needed a few boosters. But if I recall, I was one of the lucky ones, they divided you into groups by what you needed. I was in a small group that only needed a few, many had to get everything. Make sure they have up to date records. Yep, and even more OT...if they are going in the Navy have their wisdom teeth removed or they will do it in "boot camp" PIR. I am not sure about the other servces but you might want to check, that is a horrible thing to go through on top of everything else. Quote Link to comment Share on other sites More sharing options...
In2why Posted January 28, 2012 Share Posted January 28, 2012 I know when my daughter and I first saw this reported, we both looked at each other and said "A Witch, A Witch, someone must have cursed me", from the Salem Witch trials. I think it is likely conversion disorder, but I am wondering about initial stress event. And even if it is Conversion disorder it is still serious, because it is a very tough disorder to manage, and the symptoms are real. Quote Link to comment Share on other sites More sharing options...
wapiti Posted January 28, 2012 Share Posted January 28, 2012 (edited) . Edited January 28, 2012 by wapiti Quote Link to comment Share on other sites More sharing options...
cin Posted January 28, 2012 Share Posted January 28, 2012 Interstingly, Brokovich has sued a school for oil wells before: Time article. Brokovich lost, and the school sued and won its legal costs back, according to Wikipedia. I'd still like to hear Brokovich deal with the gender issue. :confused: Something that reacts more with estrogen? Maybe the exposure is in a place that the girls tend to hang more than the guys? Just some random thoughts of an overly tired mama. Quote Link to comment Share on other sites More sharing options...
elegantlion Posted January 28, 2012 Share Posted January 28, 2012 Something that reacts more with estrogen? Maybe the exposure is in a place that the girls tend to hang more than the guys? Just some random thoughts of an overly tired mama. girls locker room, girls bathroom. Would mold create situations like this? I know they tested for environmentals. I assume they would catch airborne mold even if there is no visible sign, like behind the shower walls, etc. Quote Link to comment Share on other sites More sharing options...
sparrow Posted January 28, 2012 Share Posted January 28, 2012 Interesting Dr. Drew interview with Erin Brockovich: http://drdrew.blogs.cnn.com/2012/01/27/erin-brockovich-investigating-teen-mystery-illness/?hpt=dr_mid Quote Link to comment Share on other sites More sharing options...
arghmatey Posted January 28, 2012 Share Posted January 28, 2012 girls locker room, girls bathroom. Would mold create situations like this? I know they tested for environmentals. I assume they would catch airborne mold even if there is no visible sign, like behind the shower walls, etc. Okay, along these lines, what about chloramines or ammonia or byproducts of water-disinfecting using chloramines, such as Trihalomethanes? If the water supply is treated with chloramines, and if the water is not filtered then it might contain chloramines and trihalomethanes. If the water IS filtered and NOT filtrated, then it might contain ammonia. If girls spend more time in the shower or in the bathroom after a shower, they would have more exposure to these chemicals, which linger in the air, and there could be side effects. Mold could be an ADDITIONAL problem or factor since chloramines also can create pinholes in copper pipes, which could lead to mold. Just thinking aloud very late at night. I'm sure there are logical fallacies in my not-even-a-hypothesis. http://www.chloramine.org/chloraminefacts.htm Quote Link to comment Share on other sites More sharing options...
wapiti Posted January 28, 2012 Share Posted January 28, 2012 . Quote Link to comment Share on other sites More sharing options...
Perry Posted January 28, 2012 Share Posted January 28, 2012 Okay, along these lines, what about chloramines or ammonia or byproducts of water-disinfecting using chloramines, such as Trihalomethanes? If the water supply is treated with chloramines, and if the water is not filtered then it might contain chloramines and trihalomethanes. If the water IS filtered and NOT filtrated, then it might contain ammonia. If girls spend more time in the shower or in the bathroom after a shower, they would have more exposure to these chemicals, which linger in the air, and there could be side effects. Mold could be an ADDITIONAL problem or factor since chloramines also can create pinholes in copper pipes, which could lead to mold. Just thinking aloud very late at night. I'm sure there are logical fallacies in my not-even-a-hypothesis. http://www.chloramine.org/chloraminefacts.htm None of those things are neurotoxins. IOW, they don't cause tics or other neurological problems. Quote Link to comment Share on other sites More sharing options...
arghmatey Posted January 28, 2012 Share Posted January 28, 2012 None of those things are neurotoxins. IOW, they don't cause tics or other neurological problems. I thought ammonia was a neurotoxin, but I could be wrong. Also, maybe some pathogenic neurotoxins weren't killed by the chloramines in the water. No idea really. I just happened to be reading about chloramines earlier in the evening and am now blaming everything on chloramine, especially my current state of being awake. G'night. Quote Link to comment Share on other sites More sharing options...
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