madbay

I would test for Mycoplasma and Lyme western blot while you are at at. Myco is a common co infection with pandas and can complicate treatment.

Hi Kara, I didnt get your email, but please email me your email address at megangreenstein@aol.com Thanks so much!

We also have this problem. You describe exactly what happens, she rages and hunts me down if I try to walk away. I have recently been told to try and get her to do something work/problem solving/homework oriented. Apparently it disengages the emotional brain and engages the part that is used for cognition. I was told to tell her in a calm moment, that the next time she starts to freak out, I am going to have her do a word find (I bought a book of them), so she knows to expect it when it happens. If I can get her to start doing it, she should naturally come out of the anger. I plan to try it out as soon as I need to, so I will report back about it working.

Hi all, The pandas parents meeting on the South Shore was well attended tonight and we were lucky enough to have a local RN who treats pandas at our meeting. One of the things we discussed was trying to get MGH (we have ruled out Childrens because they have been very/more unhelpful) to recognise PANS, take it seriously, and agree to: 1-learn from the experts 2-Create a treatment protocol based on what the experts go on (ie Dr. B, Dr. T, Dr. K, etc) 3-centralize treatment here in Mass, including Abx, steriods, IVIG etc (and oh by the way, not lose millions of dollars of spending on treatment in other states) We are going to be gathering information about diagnosis, treatment, test results, etc from as many mass parents as possible. We will keep all info vague, so no full birthdates or full names. Once we get this info, we are going to try to approach MGH in a formal way to discuss their interest/ability to participate in a symposium and we are going to get the experts here to boston to meet wih them. If you are interested and willing to share some data on your child, please PM me your contact email address and I will include you in the email I send around to gather data. Thank you so much for your help in advance!!!

We are going to talk first and then view the movie the greater good....it's a vaccine movie. Also, Peggy chapman rn is joining and she treats locally.

All welcome to skyspa in Hanover. Peggy chapman rn will be attending. She treats pandas children locally. We will also view "the greater good" movie after our discussion.

Hope to see you tonight!!

I live in duxbury and welcome all to the meeting. It is so god to have a group to go to and learn and share. I did ivig with dr. K in jan for my dd 7. He was awesome and I am hopeful!! Hope to see you both next Monday.

We used dr. Whittimore at childrens and he was very supportive of pandas and has helped others in our area as well. Also, there is a pandas parents meeting in Hanover,ma on mon feb 27 at 7pm at sky spa in Hanover, please come for more local resources.

We see dr. Shilpee sindawani at child and family services in Weymouth, ma. She is wonderful!

There will be a PANDAS support group meeting in Hanover, Ma at the Sky Spa at 7pm on Monday Feb 27th. All are welcome!

Yes, it is still active. It is held on the 3rd Monday of the month at Sky Spa in Hanover at 7pm. This month it is on Feb 27th because of the school vacation. I hope you can make it. I went to my first one last month and it is so good to meet moms in person. Let me know if I can help you in any way. My daugther has pandas and we are 6 months into treatment, Abx, TandA, and 1st IVIG in January

This is Dr. T's press release. I am using it with my story to get some local news attention if possible February 6, 2012 Press Release: LE ROY, NY TEENS: BEHAVIORS LINKED TO INFECTIONS Ramsey, NJ — February 6, 2012 — Rosario Trifiletti, MD has announced the results of the laboratory data that he collected in standardized fashion from eight of nine girls he examined in Le Roy, NY. National attention has been drawn to the plight of the teens who have been unable to control various bodily twitching and jerking movements. Dr. Trifiletti reported that five of eight girls show evidence of Streptococcus Pyogenes (common Group A strep) and seven of eight show evidence of infection with Mycoplasma Pneumonia (the bacteria that causes walking pneumonia). All eight girls tested show evidence of infection with at least one of those pathogens. Both of these bacterium have been associated with a PANDAS-like illness of sudden onset of motor and vocal tics. “A PANDAS-like illness is my working diagnosis, rather than a mass conversion disorder as others have suggested,” said Dr. Trifiletti. He has already started treating the girls with antibiotics and anti-inflammatory agents. When asked to comment on the continued insistence by Dr. Laszlo Mechtler that the girls have conversion disorder (or mass hysteria as Dr. Mechtler originally stated), Dr. Trifiletti said, “I'm confused by that because he's never actually seen or interviewed any of the nine girls I examined.” These findings provide a significant clue in the Le Roy High School mystery, but certainly many questions remain. Streptococcus Pyogenes and Mycoplasma Pneumonia are common pathogens that children throughout the world are exposed to every day. Why this town? Why this particular child and not another? Why such a curious presentation resembling Tourette syndrome? Until these questions are fully answered, the doctor said that the cluster will remain a mystery. “I suspect that genetic, environmental factors provide an immune background where the PANDAS-like response is possible to common pathogens. The infectious exposure is simply 'the straw that broke the camel’s back,'” said Trifiletti. However, the infectious exposure points the way to rational medical treatment for these children, which he said is of immediate importance. “Clearly, their response to the treatment I've started will be helpful in supporting my working diagnosis,” he added. As with most illnesses, Trifiletti said there is a complex interplay of genetic and environmental factors involved. As with all illnesses, psychological factors possibly play some role as well. “All we have done here is provided evidence for exposure to two infectious agents as potential factors,” said Trifiletti. “I encourage efforts to further explore genetic and other environmental factors that likely are playing an additional role here.” To reach Dr. Trifiletti contact: Telephone: 201-962-7284 Email: trifmd@gmail.com Website: http://www.site.neurokidsr.us For additional Information about PANDAS: http://www.pandasfoundation.org http://www.pandasnetwork.org http://www.nimh.nih.gov/health/publications/pandas/pandas-frequently-asked-questionsabout- pediatric-autoimmune-neuropsychiatric-disorders-associated-with-streptococcalinfections. shtml http://www.askdrsears.com/topics/childhood-illnesses/ocd http://www.savingsammy.net #########

This is Dr. T's press release. I am using it with my story to get some local news attention if possible February 6, 2012 Press Release: LE ROY, NY TEENS: BEHAVIORS LINKED TO INFECTIONS Ramsey, NJ — February 6, 2012 — Rosario Trifiletti, MD has announced the results of the laboratory data that he collected in standardized fashion from eight of nine girls he examined in Le Roy, NY. National attention has been drawn to the plight of the teens who have been unable to control various bodily twitching and jerking movements. Dr. Trifiletti reported that five of eight girls show evidence of Streptococcus Pyogenes (common Group A strep) and seven of eight show evidence of infection with Mycoplasma Pneumonia (the bacteria that causes walking pneumonia). All eight girls tested show evidence of infection with at least one of those pathogens. Both of these bacterium have been associated with a PANDAS-like illness of sudden onset of motor and vocal tics. “A PANDAS-like illness is my working diagnosis, rather than a mass conversion disorder as others have suggested,” said Dr. Trifiletti. He has already started treating the girls with antibiotics and anti-inflammatory agents. When asked to comment on the continued insistence by Dr. Laszlo Mechtler that the girls have conversion disorder (or mass hysteria as Dr. Mechtler originally stated), Dr. Trifiletti said, “I'm confused by that because he's never actually seen or interviewed any of the nine girls I examined.” These findings provide a significant clue in the Le Roy High School mystery, but certainly many questions remain. Streptococcus Pyogenes and Mycoplasma Pneumonia are common pathogens that children throughout the world are exposed to every day. Why this town? Why this particular child and not another? Why such a curious presentation resembling Tourette syndrome? Until these questions are fully answered, the doctor said that the cluster will remain a mystery. “I suspect that genetic, environmental factors provide an immune background where the PANDAS-like response is possible to common pathogens. The infectious exposure is simply 'the straw that broke the camel’s back,'” said Trifiletti. However, the infectious exposure points the way to rational medical treatment for these children, which he said is of immediate importance. “Clearly, their response to the treatment I've started will be helpful in supporting my working diagnosis,” he added. As with most illnesses, Trifiletti said there is a complex interplay of genetic and environmental factors involved. As with all illnesses, psychological factors possibly play some role as well. “All we have done here is provided evidence for exposure to two infectious agents as potential factors,” said Trifiletti. “I encourage efforts to further explore genetic and other environmental factors that likely are playing an additional role here.” To reach Dr. Trifiletti contact: Telephone: 201-962-7284 Email: trifmd@gmail.com Website: http://www.site.neurokidsr.us For additional Information about PANDAS: http://www.pandasfoundation.org http://www.pandasnetwork.org http://www.nimh.nih.gov/health/publications/pandas/pandas-frequently-asked-questionsabout- pediatric-autoimmune-neuropsychiatric-disorders-associated-with-streptococcalinfections. shtml http://www.askdrsears.com/topics/childhood-illnesses/ocd http://www.savingsammy.net #########