JoyBop Posted October 2, 2013 Report Share Posted October 2, 2013 We are FINALLY having our school meeting tomorrow to discuss ways our DS can be helped. Does anyone have any good articles to give to the school that particularly address the condition as one that can be chronic? I've seen the one in the pandas network that's great but it makes it sound like you just give them 10 days if penicillin and presto, they are cured. I love the article otherwise but it won't help us as DS is suffering terribly despite all of the abx ect. Any tips as we go in for our meeting? Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted October 2, 2013 Report Share Posted October 2, 2013 You may have heard this before, but for the school's purposes, you might be best off giving them items/articles that address how to help your DS through whatever behavior sets may impact him in the academic environment, rather than attempting to school them on the medical side of the PANDAS experience. While the medical information tends to make their eyes glaze over, we've been most successful offering them practical information pertaining to DS's primary behavior set (in our case, OCD) and how that can be met in the classroom. There are lots of sources for that sort of info, and happy to point you in that direction if you can use them. Good luck! Link to comment Share on other sites More sharing options...
JoyBop Posted October 3, 2013 Author Report Share Posted October 3, 2013 Sure, please post those resources if you can. I totally agree that they don't have to understand the pandas, or won't, but they actually want medical documentation. In fact I could not even get a meeting with the psychologist without a very harsh letter citron my doctors. So all our medical documentation says pandas all over it and we are explaining how a pandas patient might present differently than your average OCD and anxiety case. I lived the article for school nurses on the pandas network but just wish it didn't make the resolution look so simple and final. While its great for nurses at school to become aware of this condition its far from being over after 10 days of pennacillin. I would have loved to provide them with a similar article that was a bit more realistic. Link to comment Share on other sites More sharing options...
dut Posted October 3, 2013 Report Share Posted October 3, 2013 I love this article http://thewalrus.ca/a-feverish-debate/ iIt doesn't speak directly to what school needs to do but I think it's a great look at what it is really like for kids/parents, it's realistic and addresses some of the medical side. Also, it isn't afraid to address the 'controversial' aspect of PANDAS. We used that for the 'feel' and the NIMH PANS page for the big-name-institute back up stuff. bigmighty 1 Link to comment Share on other sites More sharing options...
qannie47 Posted October 3, 2013 Report Share Posted October 3, 2013 Good Luck Tomorrow!!! I thought that one article I cited recently pointed out that kids can wax/wane for years....maybe I am remembering wrong...I did think it had great info though. Link to comment Share on other sites More sharing options...
philamom Posted October 3, 2013 Report Share Posted October 3, 2013 (edited) some good printable information on www.ocdfoundation.org (click pandas/pans) Edited October 3, 2013 by philamom Link to comment Share on other sites More sharing options...
rowingmom Posted October 3, 2013 Report Share Posted October 3, 2013 These are the articles I use: http://intramural.nimh.nih.gov/pdn/pubs/pub-13.pdf http://intramural.nimh.nih.gov/pdn/PANDAS-to-PANS2012.pdf And for a good list of symptoms that can be expected: http://latitudes.org/downloads/pandas_pans_scale.pdf Link to comment Share on other sites More sharing options...
Teri Posted October 3, 2013 Report Share Posted October 3, 2013 My advice also is to keep your focus on how PANDAS impacts your son specifically and what he needs to be successful. We just had our 504 meeting last Friday. Dd7 is in 1st grade and doing well at school. We wanted the 504 in place as more of a proactive step for her. It is a daily struggle to keep her healthy! In our meeting we brought the School Nurse article, PANDAS fact sheet, and a PANDAS fact sheet from OCD foundation website. We wrote a brief, bulleted synopsis of Dd issues and what PANDAS looks like for her. We included information like the specific symptoms that would indicate that a flare up has been triggered. We made sure to explain that Dd does not get physical symptoms of illness right now (fever, sore throat, etc..) but rather neuro reactions - tics, compulsions. That was all new for them. We wrote out specific accommodation requests for her - all were reasonable & would not cost district any $$. School was very cooperative and literally incorporated all accommodation suggestions. So go into the meeting prepared. Know what you are asking for your child and provide school with brief info & access to resources. Good luck! Teri Link to comment Share on other sites More sharing options...
philamom Posted October 4, 2013 Report Share Posted October 4, 2013 (edited) deleted Edited October 4, 2013 by philamom Link to comment Share on other sites More sharing options...
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