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http://www.wivb.com/dpp/news/genesee/doh-offers-leroy-victims-evaluations

 

 

DOH offers LeRoy victims evaluations

Tests show nothing unusual in school's water

 

Updated: Wednesday, 01 Feb 2012, 4:46 PM EST

Published : Wednesday, 01 Feb 2012, 4:42 PM EST

 

ALBANY, N.Y. (RELEASE) - New York State Health Commissioner Nirav R. Shah, M.D, MPH today announced that the Department has secured an agreement with the National Institutes of Health (NIH) that the NIH will provide the Leroy High School students suffering from tic-like symptoms with a free, independent third-party evaluation of their cases.

The evaluations will be performed under the auspices of Dr. Mark Hallett and Dr. Susan Swedo of the NIH Institute on Neurology in Bethesda, Maryland, at no cost for the specialized consultation or for travel and accommodation costs of the students and their families.

 

The Department of Health is sending information on this opportunity to visit NIH to the parents and families of those affected by this illness and urges them to take advantage of this opportunity to be examined by these experts.

 

Dr. Hallett is currently NIH’s Chief of the Medical Neurology Branch and Chief of its Human Motor Control Section. He is currently the Principal Investigator of a clinical study of the diagnosis and natural history of patients with neurological conditions.

 

Dr. Swedo is currently Chief of the Pediatrics and Developmental Neuroscience Branch at the National Institute of Mental Health (NIMH). Dr. Swedo and her NIMH team were the first to identify a new subtype of childhood disorder thought to be related to streptococcal infections known as Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS). Dr. Swedo's work has led to the development of several possible therapies for the condition.

 

“The Department of Health understands that parents and students in the LeRoy School District are seeking more information on the tic-like symptoms that have presented in some students in the Jr/Sr High School,” Dr. Shah said. “Based on the clinical evaluations of the patients and the pattern in which these cases presented, the Department continues to believe that there is no environmental or infectious cause of these illnesses or public health threat to the community.”

 

At the request of the school district,t water samples from the school at the Department’s Wadsworth Laboratory in Albany. The Department analyzed three drinking water samples taken on January 25, 2012 from the Leroy High School by the Genesee County Health Department. Two samples were taken from areas frequented by students (student laboratory and kitchen). The third sample was taken where public water enters the building and is representative of water quality in the Monroe County Water Authority (MCWA) distribution system that supplies the high school and the surrounding area. The analyses of these samples were completed on January 30, 2012.

 

The results show nothing out of the ordinary. All three samples meet state and federal drinking water standards. The water quality in the student areas was no different from the water quality in the area around the high school. In addition, all three samples were consistent with the normally expected water quality for the entire Monroe County Water Authority (MCWA) service area. The only chemical detections to note were three disinfection by-products, the earth metal barium, and fluoride. All of these detected chemicals were at levels that are within state and federal drinking water standards. The disinfection by-products were found at levels consistent with entire the MCWA service area. Disinfection by-products occur at all drinking water systems that chlorinate surface water and result from the reaction of the primary disinfectant (chlorine) with naturally occurring organic material found in all surface waters of the State. The detected barium comes from Lake Ontario and is consistent with the level normally present in MCWA's water. Fluoride is added by MCWA for dental protection purposes and the level detected is MCWA's optimal target level for fluoride. Detected Chemical Range of Levels Detected Maximum Contaminant Level

 

Disinfection Byproducts:

Chloroform 27 - 28 (ug/L or ppb) *

Bromodichloromethane 10 (ug/L or ppb) *

Dibromochloromethane 2.8 (ug/L or ppb) *

Total Disinfection Byproducts = 39.8 - 40.8 (ug/L or ppb) 80 (ug/L or ppb)

 

Barium 0.018 - 0.019 (mg/L or ppm) 2 (mg/L or ppm)

Fluoride 0.7 (mg/L or ppm)) 2.2 (mg/L or ppm)

 

*Drinking water standards for the disinfection byproducts are set for the total, not the individual components.

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YES!!! Thank you Dr. SWEDO! !!

 

I hope that every LeRoy parent takes this offer -- it is like winning the lottery!!! -- only better.

 

I would RUN at this opportunity and insist that Dr. Swedo be the primary doctor seeing your child--She will rule out PANS and any other infectious issue. If anyone has the resources to get to the bottom of this it is Sue Swedo.

 

Go for it parents--please!

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Did anyone see the Dr Drew show where he mentioned this opportunity, but then alluded to how FAR away NIMH was ... almost like he was trying to get them NOT to go? Geesh it's Maryland/DC, not Timbuktu!!

 

And as an aside, Is anyone getting a little jealous of these girls? First free Dr. T. coming to them, and then this offer (travel expenses even paid) for an evaluation with Swedo. I hate to admit, I'll be really disappointed if these families don't pursue this (while simultanously complaining about not having answers). I hope I don't sound mean spirited, but I am sort of amazed that only 9 ended up seeing Dr. T. There are lots of Pandas families that suffer for years, and go broke in the process trying to secure a diagnosis and treatment, so I really hope these families don't waste this opportunity. ( Ok, I'm done being mean!!)

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Did anyone see the Dr Drew show where he mentioned this opportunity, but then alluded to how FAR away NIMH was ... almost like he was trying to get them NOT to go? Geesh it's Maryland/DC, not Timbuktu!!

 

And as an aside, Is anyone getting a little jealous of these girls? First free Dr. T. coming to them, and then this offer (travel expenses even paid) for an evaluation with Swedo. I hate to admit, I'll be really disappointed if these families don't pursue this (while simultanously complaining about not having answers). I hope I don't sound mean spirited, but I am sort of amazed that only 9 ended up seeing Dr. T. There are lots of Pandas families that suffer for years, and go broke in the process trying to secure a diagnosis and treatment, so I really hope these families don't waste this opportunity. ( Ok, I'm done being mean!!)

 

 

Ditto.

 

Do you think it would work to get into Swedo if I said we JUST moved to Leroy!!??

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Did anyone see the Dr Drew show where he mentioned this opportunity, but then alluded to how FAR away NIMH was ... almost like he was trying to get them NOT to go? Geesh it's Maryland/DC, not Timbuktu!!

 

And as an aside, Is anyone getting a little jealous of these girls? First free Dr. T. coming to them, and then this offer (travel expenses even paid) for an evaluation with Swedo. I hate to admit, I'll be really disappointed if these families don't pursue this (while simultanously complaining about not having answers). I hope I don't sound mean spirited, but I am sort of amazed that only 9 ended up seeing Dr. T. There are lots of Pandas families that suffer for years, and go broke in the process trying to secure a diagnosis and treatment, so I really hope these families don't waste this opportunity. ( Ok, I'm done being mean!!)

 

 

Ditto.

 

Do you think it would work to get into Swedo if I said we JUST moved to Leroy!!??

 

He he he! Great idea!!

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Did anyone see the Dr Drew show where he mentioned this opportunity, but then alluded to how FAR away NIMH was ... almost like he was trying to get them NOT to go? Geesh it's Maryland/DC, not Timbuktu!!

 

And as an aside, Is anyone getting a little jealous of these girls? First free Dr. T. coming to them, and then this offer (travel expenses even paid) for an evaluation with Swedo. I hate to admit, I'll be really disappointed if these families don't pursue this (while simultanously complaining about not having answers). I hope I don't sound mean spirited, but I am sort of amazed that only 9 ended up seeing Dr. T. There are lots of Pandas families that suffer for years, and go broke in the process trying to secure a diagnosis and treatment, so I really hope these families don't waste this opportunity. ( Ok, I'm done being mean!!)

Yeah, but not knowing what we know and being constantly bombarded w/ theories and offers from all different directions- it must be hard to pick out a direction to move in, and how do they know which specialists are the right ones to go to?

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Yeah, but not knowing what we know and being constantly bombarded w/ theories and offers from all different directions- it must be hard to pick out a direction to move in, and how do they know which specialists are the right ones to go to?

 

Good point. I believe some PANDAS folks are in contact with James Dupont, so hopefully that will help.

 

The only other main and reasonable theory (IMHO) is the environmental toxins theory...but even if you are a parent who THINKS that is the answer, wouldn't it make sense to also investigate the PANDAS route (esp. since it is being handed to them on a silver platter?).

 

Just as I wouldn't (even though I believe PANDAS is the cause) want to prevent EB's team from investigating the environment in case a really important clue came up, these people really need to fully pursue PANDAS...the more information the better.

 

And then there is there are the vax theories, but even that is compatiable with PANDAS.

 

Most of the other theories the public is flinging around are just too absurb (hopefully the parents will "get" that)...diet soft drinks, Yoga with an untrained Guru, too much texting...

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Exposure to a certain toxin could be the thing that make these girls at risk for PANS. Dr Cunningham has a slide in her preso (from Texas symposium) that she believes that there are several things that put an individual at risk for pandas (PANS)

1 )genetics - history of rheumatic heart and rheumatic conditions

2) pre-exiisting immune deficiency

3) other chronic infections (Lyme, mycoplasma)

4) ENVIRONMENTAL conditions

 

Take any of those four things - add strep (and possibly other infection) - and you have pandas. Those things are not uncommon conditions, so it not rare for people to have more than one of them. I've only ever seen ENVIRONMENT mentioned on that slide of hers...and don't know why she believes that or what case reports or if this is just theory, but its a pretty broad statement, and I know it was on the slide she presented at the Texas A & M Grand Rounds about a year ago...and perhaps what they ALL have in common is that they can cause inflamation/breach of the BBB - allowing the autoantibodies we normally make to cross the BBB, and send back signals to make more and more of them.

 

I don't think this is a strict case of pandas - if it is that - but I'd REALLY like to see if their CAM K and antineuornals are elevated - at least that might give a clue that something is messing with their immune system, and or disrupting their blood brain barrier. MS is another type of condition (predominately women, a certain age range, and thourght to be triggered by a virus - and some say is actually a disease of the BBB ! ). I don't know what exactly is going on with Dr C's lab, but I think they are under some type of blind and that if they could run the test, would not be able to disclose the results to the parents (this from Kathy, who was talking with Dr c about it). maybe something to do with the process for setting the lab of for commercial operation, I dunno.

 

IT may be impossible to find the trigger, or the commonality that makes them all "at risk" - and may not be in their system any more. Once the cycle has started, the trigger doesn't need to be there. But if anti-neuronl antibodies are, they can do something to help those poor kids.

 

Swedo - would be amazing for them - BUT I also know that she (et al...) are VERY sensitive to the tight definition of PANDAS , upon which the success of the current IVIG study (with the extremely STRICT guidelines) and her life's work is based. And she is unfortunately not good at PR, so while I don't doubt that she could easily find out if this is PANS if it lies outside the strep (pandas) I'm a little apprehensive of how that could go down in the media. Could either be the biggest media opportunity ever, or biggest setback for pandas if not handled well....I hope they go for it, but get some PR assistance!

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I don't think this is a strict case of pandas - if it is that - but I'd REALLY like to see if their CAM K and antineuornals are elevated - at least that might give a clue that something is messing with their immune system, and or disrupting their blood brain barrier.

 

One thing I was thinking, if they go to NIMH, they have a chance of actually getting these tests done (CAM K. and anti-neurals). Otherwise, that information will be lost forever.

 

But, I do agree that while while environmental toxins (just like genetics) may be making their immune system more vunerable to cancers and immune dysfunction, it is not the PRIMARY trigger which caused this cluster of acute onset tics/dystonia.

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Personally, I wouldn't be surprised if the infection could end up being something along the lines of MycoPlasma Pneum. It was Oct/Nov when mine flared, and I'm still fighting it (as is my DS who got strep + exposed to mycoP (his IgG doubled), plus I know of 2 other people who got it at about that time. Granted, I'm not in NY, but this year just seems so much worse than previous years.

 

And, yes, I agree that the environmental piece may be an important clue, and may have contributed to it.

 

I guess we'll just have to see what Dr. T., and hopefully Dr. Swedo (if they take her up on it) come up with.

 

I agree it's so not fair that they have access to all this free service, BUT...think about how all this free publicity is helping all of us get the word out that it even exists. Maybe other doctors will jump on board as a result.

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so do you think maybe they would even fit the NIMH guidelines where they might even get to try IVIG? Is that what you meant by "if anti-neuronal antibodies are, they can do something to help those poor kids"? The IVIG goes after the antibodies? Also, didn't Lynn J. just put a post out about looking for people with kids with less than 6 months since onset of movement disorder?

 

Exposure to a certain toxin could be the thing that make these girls at risk for PANS. Dr Cunningham has a slide in her preso (from Texas symposium) that she believes that there are several things that put an individual at risk for pandas (PANS)

1 )genetics - history of rheumatic heart and rheumatic conditions

2) pre-exiisting immune deficiency

3) other chronic infections (Lyme, mycoplasma)

4) ENVIRONMENTAL conditions

 

Take any of those four things - add strep (and possibly other infection) - and you have pandas. Those things are not uncommon conditions, so it not rare for people to have more than one of them. I've only ever seen ENVIRONMENT mentioned on that slide of hers...and don't know why she believes that or what case reports or if this is just theory, but its a pretty broad statement, and I know it was on the slide she presented at the Texas A & M Grand Rounds about a year ago...and perhaps what they ALL have in common is that they can cause inflamation/breach of the BBB - allowing the autoantibodies we normally make to cross the BBB, and send back signals to make more and more of them.

 

I don't think this is a strict case of pandas - if it is that - but I'd REALLY like to see if their CAM K and antineuornals are elevated - at least that might give a clue that something is messing with their immune system, and or disrupting their blood brain barrier. MS is another type of condition (predominately women, a certain age range, and thourght to be triggered by a virus - and some say is actually a disease of the BBB ! ). I don't know what exactly is going on with Dr C's lab, but I think they are under some type of blind and that if they could run the test, would not be able to disclose the results to the parents (this from Kathy, who was talking with Dr c about it). maybe something to do with the process for setting the lab of for commercial operation, I dunno.

 

IT may be impossible to find the trigger, or the commonality that makes them all "at risk" - and may not be in their system any more. Once the cycle has started, the trigger doesn't need to be there. But if anti-neuronl antibodies are, they can do something to help those poor kids.

 

Swedo - would be amazing for them - BUT I also know that she (et al...) are VERY sensitive to the tight definition of PANDAS , upon which the success of the current IVIG study (with the extremely STRICT guidelines) and her life's work is based. And she is unfortunately not good at PR, so while I don't doubt that she could easily find out if this is PANS if it lies outside the strep (pandas) I'm a little apprehensive of how that could go down in the media. Could either be the biggest media opportunity ever, or biggest setback for pandas if not handled well....I hope they go for it, but get some PR assistance!

Edited by eljomom
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