PANDAS Occ Therapist

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Smarty - You bring up some good questions. I had posted last Fall when I was looking for parents to share OT stories with me as I was preparing to give presentations at a couple of OT conferences (see http://www.latitudes.org/forums/index.php?showtopic=9662&st=0&p=81161&fromsearch=1entry81161). I wanted to let you know that I am working with a couple of other OTs and we are trying hard to get the word out to OTs about PANDAS, and we are also trying to get some research going for OT and PANDAS. I've given 3 presentations at the State and local level. Another OT and I have written an article that will be published in the Fall in OT Practice Magazine, and we are presenting a poster at the American Occupational Therapy Association Conference in Philadelphia in April. Hopefully by this time next year we will have some online resources for OTs to go to when a parent tells them their child has "PANDAS". Thanks to the parents who shared stories with me last Fall, I have learned about the GOOD, BAD, and UGLY OT intervention for kids with PANDAS. Some people had lots of success with OT, but in many cases, the OT and the parent were unaware that the child had PANDAS, so the intervention was not appropriate. From what I have been hearing from parents, OT may be most helpful as follows: DURING AN EXACERBATION: OT Can help with some sensory "tools" to calm things down and help you get through the day. I do not expect that OT will "fix" anything during an exacerbation, but some parents have told me about wonderful sensory tools they learned from their OTs that have helped their kids to eat, dress, attend school, go out in public, and get through homework. Also, during an exacerbation an OT could help with assistive devices to help with handwriting. Some kids benefit from low-tech things like pencil grips, slant boards, graph paper, and even putting a piece of paper with DARK vertical lines behind their regular horizontal lined paper so the kids can put one letter in each square and then skip a square between words (the nice part about this is once you remove the vertical line template from the back, you can't tell the child had any extra help and it looks like everyone else's paper!) Also - (how could I forget) OTs are often the folks who evaluate and recommend high tech tools like word processors and computers for handwriting problems... AND OTs should be able to help develop strategies to reduce dysfunction due to disorganization. AFTER AN EXACERBATION: OT should be be able to do a through assessment and help to build things back up, but we really need some research on this~!. I wonder about our kid's muscle tone and underlying strength after an exacerbation, and OT should be able to help with this. Having a stable core (trunk) is essential as all other movements come from there. OT should also be able to work on handwriting and any other skill (dressing, eating, bathing, etc) after an exacerbation. I say "should" because we really need research for this... but in theory it should work! Send me a PM if you have more questions. Let us know if you end up getting OT and how it goes!

Thank you to everyone who has shared stories so far. I've heard from several people and the stories have helped to validate that this talk is needed. I am not limiting the type of information people send, which has been good because people are sending things I never would have thought of! I've received stories about sensory processing, handwriting, and daily living skills, articles people have written, offers of handwriting samples and pictures kids have drawn, and essays written by the children themselves. I've also received ideas for management that people have gotten when working with their OT, which will be great to share with others. Vickie- The information you posted here is exactly why I want to do this. With a better understanding, we can have more appropriate evaluations and interventions. Thank you all for your help!

Hello - I am a pediatric occupational therapist and I am going to be giving some presentations this Fall on PANDAS to occupational therapists and also to other health personnel. I am also the parent of a child with PANDAS and I am an active member on this forum, though I prefer to keep my forum identity separate from my professional identity. Sheila has agreed to allow me to submit this post asking for help with PANDAS stories. I am looking for stories related to occupational and physical therapy. The stories would be used in my presentations, which I am volunteering to give. I am doing this because I believe that many children with PANDAS are referred to occupational therapists without knowing that the problem is a PANDAS / PITAND exacerbation, so I want OTs (and other health professionals) to hear about PANDAS/PITANDs. If you have a story relating to therapy that you would be willing to share, please send me a PM. I will then send you my contact information and specifics about the presentations, so you can decide if you want to contribute. I will not use any names or identifying information in the presentations. Some examples of stories that would be helpful are be specific instances of sensory defensiveness during an exacerbation, or specific examples of handwriting changes or math changes during an exacerbation. OTs are also very interested in daily living skills, so examples of problems with dressing, bathing, eating (especially food texture issues), inability to play with friends or engage in sports or other activities - all of these would be very helpful. Also, this is your opportunity to speak up if there is anything you would want therapists to know about PANDAS! The more examples I can give, the more likely it is that OTs (and other professionals) will recognize PANDAS and suggest an evaluation to families. Please send me a PM by September 7 if you are interested in sharing a story. Thank you so much... and best wishes to everyone for a good school year!