colleenrn
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Posts posted by colleenrn
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Below is part of an article from yesterday. This is disgraceful. These poor children and their families are suffering, while being told it is all in their heads. The school district is placing padlocks on the gates so Brockovich's team can't get to the sports fileds, then they are forbidden to take samples. IF the school is telling the truth, that all soil samples were negative for toxins, then WHY are they forbidding samples from being taken? And why does Dr. Conversion Disorder have concerns with Dr. Trifiletti coming to town?
Jan. 29 update: Famed environmental activist Erin Brockovich met resistance as her team tried to test the area around an upstate New York school for clues to a case involving more than a dozen teens plagued by mysterious Tourette's-like symptoms and seizures.
Bowcock looked at ground water and soil at a nearby park for anything out of the ordinary. "I'm just looking at the environment. I'm trying to see where things drain to. What types of soils they are," Bowcock told NBC News.
However, the school placed locks on all the entrances to the sports field, NBC's Rochester, NY, station reported Saturday. Local police and a school security guard initially refused to allow the Brokovich crew on school grounds until the school superintendent and a district spokesman arrived. Officials agreed to let parents, Bowcock and his team walk the grounds, without media, as long as they didn't take any samples.
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http://wnyt.com/article/stories/S2468945.shtml?cat=300
This article says there are 17 teens affected now, one of them does not even live in Leroy (she lives in Corinth), but traveled to Leroy last year.
From article:
One of those girls is 17-year old Lori Brownell, who had been a top scholar athlete, excelling in both softball and field hockey, before her symptoms began showing last year.
Lori has been posting regular YouTube videos intent on giving the disease the attention she believes it deserves so that she can help others learn to cope with it.
It just so happens Lori traveled through LeRoy last year with her softball team. And perhaps by coincidence, one of her teammates, Alycia Nicholson, is now also experiencing Tourette's symptoms that include twitching, convulsions, and joint pain.
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One of the moms on the Dr Drew show said strep was never mentioned to them, so the Health Dept. dr saying they had ruled out any source of infection is "garbage". I honestly believe these DENT drs know it is something other than the very bogus definition of conversion disorder.
Colleen
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Apparently NMDA receptor encephalitis often occurs when a female has an ovarian tetroma (cyst). In reseraching all of this, I am finding parents who are saying their previously healthy daughters developed ovarian cysts after being vaccinated (One vaccine is cervarix for HPV). If you do searches under VAERS, ovarian tumors/cysts pop up... If I am understanding this correctly,the NMDA antibodies cause an autoimmune process where the antibodies attack the brain, causing neuro symptoms, including chorea.
Colleen
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I started reading about NMDA receptor encephalitis in an earlier thread today and wondering. Could this be what the 12 girls in NY have? Their symptoms fit with this and NMDA encephalitis has occured post vaccines......
Colleen
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OMG- in reading this article I started reading about NMDA receptor encephalitis. Isn't this, couldn't this be what the Leroy 12 Girls have?? Their symptoms FIT these symptoms and have been known to happen after vaccination.
Colleen
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Gardasil and Menactra, given together, has caused strep in many girls. Do a search under Gardasil, menactra, strep. Gardasil has not been cleareed to be deemed safe to give along with Gardasil, but it is routinely done.
The New York immunization schedule for 11-18 year old girls is Gardasil, Menactra, Tdap, and Influenza. Did these girls receive these vaccines prior to their symptoms appearing? I would bet yes.
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This is not conversion disorder and I want to scream as I sit here listening to the Today Show. They started the story saying they "had answers", then stated the neurologists treating the girls agree it is conversion disorder/mass hysteria. I truly feel some of the drs involved know exactly what is causing this. Are they too afraid of their non-believing colleagues? Did they get Gardasil AND/or influenza vaccine. Because it began in the Fall, my guess is that they went to get one of those two vaccines and while at the drs office got jabbed with a second, possibly third (some kids that age are given catch up vaccines).
This is not conversion d/o.
Colleen
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The following is Dr. T's comment on this article. Interesting.
Colleen
Dear Sirs,
I am a child neurologist who has devoted the past 12 years of my career to the careful study of this condition. I now run a practice that is virtually "PANDAS only" and have seen approximately a thousacases. I have published in the standard peer-review scientific medium. I can say the following with certainty:
1. The term "PANDAS", which (via the terminal "S") has been, by virtue of a 2010 NIMH conference which I attended along with a few dozen interested doctors, been reformulated as "PANS". PANS (Pediatric Acute Neuropsychiatric Syndrome) refers to the acute onset of OCD and/or tics no matter what the cause. PANS is more complex also including urinary issues (including bedwetting), cognitive decline, learning disabilities and other features. The key feature is ACUTE onset - the child "snaps" for now reason.
2. PANS has several putative associations, including Group A streptococcal infection and Mycoplasma Pneumoniae. These two triggers are present in 70-80% of cases.
3. Because of the plethora of associated triggers of completely different antigenic specificity producing an identical clinical syndrome, the notion that "anti-strep antibodies attack the brain" must be incorrect. Instead, a much better model is PANS is an "alternative fever response", seen in 1-2% of children to common infections most children are exposed to.
4. PANS is not rare, it is massively underdiagnosed at present - I estimate that 1-2% of children at a minimum have this condition. It is likely the major cause of motor tics (including Tourette syndrome) in children as well as childhood OCD. Obviously, this is just my hypothesis, but a very well-informed one.
5. When a child on the autistic spectrum gets PANS, there is predictable functional regression. Sometimes a high functioning autistic child can suddenly regress (well beyond age 3) and rapidly lose gains that have taken years to acquire. PANS should be high on the differential diagnosis list - as the regression is potentially reversible by standard medical treatments. In fact, I believe all children that are given a diagnosis of autism ought to be evaluated for this condition.
6. Most, if not all children with PANS have mild immunodeficiency, and can possibly be identified a "PANS-prone" by a variety of medical tests.
7. Adults can and do get PANS, most having had an unrecognized history in childhood.
In summary, this common condition is poised to revolutionize our thinking about the genesis of certain mental illnesses and neurological conditions in childhood. Mental illnesses are complex conditions, involving many genes and environmental factors. But people, and especially children, do not just "snap" for a reason, and parents should not just accept explanations of "stress" or "it just happens to some kids" as an explanation.
Comments are appreciated!
Sincerely yours,
Dr. Rosario Trifiletti MD PkD (aka "Dr. T" to the PANS community)
www.neurokidsr.us
pandas.yuku.com
trifmd@gmail.com
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Mom2yo,
What antibiotic was your son on for a month and what was the dose? Some antibiotics arew more effective for strep, especially if the person could have had strep for a while.
Colleen
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I just emailed the Interim Director of the Genesee Health Department (Leroy is in Genesee County) and the head public health nurse there, giving them all of Dr. Swedo's contact info, as well as all of her colleagues listed on the NIMH site. We will see where that goes...
Colleen
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Then he is geting the upper end of the dose. It is 7.5-15mg/kg/twice per day and at 40# he is getting about 14mg/kg/2x a day. I just wanted to make sure he was getting the highest dose. Withj that said, cefprozil is a cephalosporin and can be given at the same time as a penicillin (augmentin) or zithromax(would be best IMO). Does your ENT have any knowledge of PANDAS and maybe you could persuade them to add in zithromax, even if just for 7-10 days?
Colleen
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Bulldog24,
What does your son weigh and what dose of the cerprozil is he on?
Colleen
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I would put a call and email into Dr.T. While cefprozil can be effective in treating strep, it can sometimes be ineffective with intracellular strep. In cases of intracellular strep, azithromycin (zithromax) is better. If I was in your shoes right now I would do a phone consult with Dr. T and he will most likely give you zithromax to add to the cefprozil. If it were my child I would give both cefprozil AND zithromax for at least 10 days. Try giving ibuprofen every 6-8 hours too.
Hang in there!
Colleen
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Hi. I am asking this question for my brother. His 4 year old and 9 year old have PANDAS and Lyme disease and babesia. His wife recently purchased a small dog and his step daughter is frequently at their house with her dog. His LLMD strongly advised them NOT to get a dog b/c of the risk of more ticks in the house or more exposure of parasites from the dog. I am wondering what the opinion is of the families dealing with Lyme and other TBI. I usually post on the PANDAS forum for my children with PANDAS.
TIA!
Colleen
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DCmom-
Hi to you too! Things are going relatively well I think. All 4 kids are still on antibiotics (3 oldest on zithromax and 5 yo on augmentin). My youngest will most likely have a T&A early next year(other 3 have had T&A already). March was the last time they cultured positive for strep. Two of my kids had positive rapids in March. One kid was on zithromax 250mg/day and had recewntly finished a 10 day course of Augmentin XR 1,000 mg/twice per day- STILL tested positive. My 5 yo tested positive on a rapid strep test at the same time. He had been on Augmentin 250mg/twice per day.
However, there have been other times since March that I knew they had strep D/T rapid onset of PANDAS symptoms. My dr treated them despite a negative 72 culture and they improved. I am suspicious right now they may have strep or being exposed everyday at school b/c three of them have had a ramp up of symptoms.
It is a constant battle to figure out if I should have them tested or wait a few days.
Colleen
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I had posted this back in January when we were talking about why our kids have frequent urination/urgency with PANDAS symptoms. I found this talked about a lot on sites dealing with Parkinsons disease. The basal ganglia is damaged in parkinson's also. The basal ganglia controls the bladder's internal schincter. I think this may be what is happening in children with PANDAS. Here one website that talks about it. I posted a part of the article and the link.
http://www.pspinformation.com/disease/parkinsons/bladderproblems.shtml
The normal process of bladder filling proceeds in silence as the bladder's walls become distended. The individual has no conscious perception of the process until the contents reach around 1,000 cc (one liter). At this point, the bladder starts signaling to the brain that the time for emptying has arrived. The brain - consciously now - keeps the bladder from emptying until the person has found the appropriate location to void. Once all is ready, the brain gives the go-ahead. The bladder contracts while at the same instant, a system of sphincters that have kept the bladder closed relaxes. A network of nerve centers including the basal ganglia insures this perfect timing, this synchrony. And it is in these basal ganglia - located deep in the brain substance - that the central malfunction of PD is located.
Specifically, the basal ganglia are part of the connections that allow the brain to keep the bladder quiet while filling. In PD the malfunction in this part of the circuit results in a bladder that contracts prematurely at low amounts of urine, much lower than 1,000 cc. This condition of unstable or irritable bladder is known as detrusor hyperreflexia, named for the muscle that contracts the bladder wall. Such premature contractions are not strong enough to directly cause the bladder to empty but create enough signaling to the brain to create a sense of a strong urge to void. Enter the symptom of urinary urgency, a sensation that a normal person may only feel if she or he had not emptied the bladder after many hours. The patient rushes to the bathroom only to empty a very small amount of urine. Since the process repeats itself over and over the visits to the bathroom become numerous both during the daytime - urinary frequency - and at night - nocturia. Urinary urgency can become so strong that if the PD patient - already burdened by slowness of movement - fails to reach a bathroom on time, she or he suffers an 'accident', something we call urge incontinence. All of these symptoms represent a abnormality in bladder filling and urologists also know them as irritative symptoms.
Colleen
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Thank you for yor response. I just PM'd you.
I am wondering it it could be that her blood brain barrier is breached, thus allowing the medication to easily enter her brain OR... I am stumped and i am concerned.
Colleen
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I have not posted in a long time, but read daily. My question is about my 15 year old daughter (diagnosed with PANDAS at age 5). She is currently taking Augmentin XR 1,000mg twice per day and zithromax 250mg every other day.
Yesterday she had her eyes dilated for an eye exam. Within a few minutes of having the drops put in she became nauseated. About 2 minutes later she became very dizzy and then fainted. She had a headache and pressure behind her eyes for the rest of the day. Her BP was also much lower than it normally is- it was 80/50. The three drops she was given were 1. tropicamide, 2. proparacaine, 3. fluorescine Today she still has a lingering headache and a little pressure behind her eyes.
I am wondering if anyone has experienced this with their children with PANDAS.
TIA!
Colleen
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My daughter is in 9th grade this year. Before she started middle school I signed a religious exemption (no philisophical in our state) to exempt her from the vaccines. No one ever questioned me about it at all and it was not even required I repeat the exemption from 6th grade when she entered high schol this year- they just used the previous exemption. I am doing the same with my younger children also.
I would not get the boosters if it were my child, but it is a personal decision.
My oldest had all vaccines through age 5. My next 3 kids have had only polio. My child with all the vaccines has far worse PANDAS thasn my other children and IMO one main reason is the vaccines she got. The other reason, IMO, is we have been more aggressive with antibiotics and getting T&A .
Colleen
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Wilma,
I am so sorry for what you are going through. I just wanted to add this in case you were not aware. Even if you voluntarily admit your child to a psychiatric facility, they can keep her against your wishes if you try to take her out and they think she is a danger to herself and/or others. If that occured, they would get a TDO (temporary detaining order) from a magistrate and be able to keep her against your wishes.
I worked in a pysch hospital with children and adolescents and I definitely saw children/teens who became violent with psych meds- this was in my PRE PANDAS years, so I did not know why, but I am 100% sure these kids had PANDAS in hindsight. Unless the drs are very aware of PANDAS and the fact that psych meds usually cause bad reactions in PANDAS kids, I would be extremely hesitant to hospitalize her. They would most likely continue with the psych meds, switching them, trying new ones or stronger ones, possibly causing her to be more violent and then you have the possibility of them using restaints if she becomes violent.
I am not trying to scare you, just want to make sure you know of the possibilities.
Hang in there!
Colleen
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My brother just talked to Dr. Latimer's office. They said Dr. L refers Lyme patients (or possible Lyme pts) to Dr. Charlotte Babey-Morel at Georgetown. They will give him until noon to decide if he wants to keep the appt. with Dr. L or cancel.
Colleen
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My brother has an appoitment tomorrow with Dr. Latimer for one of his children (other child has appt. in a few weeks). He is considering cancelling the appoitment b/c he recently began to wonder if his 4 year old could be dealing with Lyme as her Western Blot showed bands 41 and 23 positive. I am asking this question for him. Does Dr. Latimer address/test for Lyme? My brother's children also have strep issues and seem to have PANDAS, so I am thinking he should keep his appt. with Dr. L, but looking for any input.
TIA.
Colleen
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My kids have gotten ear infections while on daily Zithromax. Our dr. always adds another antibiotic to treat the ear infection, but we do not discontinue the zithromax.
Recently one of my children got strep while on Augmentin and another child got strep while on daily zithromax. We kept giving the daily antibiotics, b ut added a ten day course of another antibiotic (Omnicef for the one taking zithromax and zithromax for the one taking Augmentin).
I would continue with the daily zithromax if they added another antibiotic for a lung infection.
Colleen
"Tourette Outbreak" in Leroy, NY
in PANS / PANDAS (Lyme included)
Posted · Edited by colleenrn
I am almost certain that Dr. Mechler, each time he speaks about these girls to the media, is violating HIPAA. Each and every time. Wonder how many violations he has made in the past few weeks. You cannot tell the media, or anyone for that matter, these personal details, including how many times they had made or canceled appointments. Not only is he standing by his very bogus diagnosis, he is violating these families privacy rights repeatedly. Why is no one calling him out on this? Apparently anyone at all can report these violations. The link is below. I wonder if any of these families are reading on this forum because they have a legal right to protection and a legal right to report violations. This is wrong. This is negligent on this doctor's part.
The Privacy Rules require physicians to use appropriate administrative, technical, and security safeguards to protect the privacy of protected health information — including oral communications. This means that physicians must use reasonable efforts to have protections in place, but they do not need to make expensive structural changes to "soundproof" their offices.
http://www.hhs.gov/ocr/privacy/hipaa/complaints/hipcomplaintform.pdf
Dr. Mechler said in the Jan. 29 Buffalo Times article:
http://www.buffalonews.com/city/communities/batavia-genesee-county/article716955.ece
"People do not want to accept that," said Dr. Lazlo Mechtler, one of two neurologists at Dent Neurologic Institute who have evaluated 12 of the 15 cases that have come to light so far. "They live a conspiracy life in a bioterrorist world."
It is unbelievable that he would make that ridicuolus statement to suffering families. Then he goes on to say:
"Conversion disorder is very common," Mechtler said. "Neurologists see it regularly. I probably see it every two or three days."
I worked as an RN in a psychiatric hospital for years and guess what? We never, even one time, had any patient diagnosed with conversion disorder. IMO, Dr Mechler is regularly misdiagnosing some of his patients. I hope that all of his current patients get a second opinion from a physician not in anyway connected to DENT.
Colleen