PANS/PANDAS

Hi, my name is cameron5. My son has had PANS/PANDAS (diagnosed and in treatment since 2020) and we are looking to understand great accommodations to help in college with an acute-chronic illness like these and all the comorbidities that come with it like, OCD, anxiety, ADHD, IBS, executive functioning deficit, writing and math degradation, and sensory disorder. We understood he would likely become ill sharing a room with others his first semester and sadly was sick for over 4 weeks. This is when we learned that the accommodations that he thought he set into place that summer with the office of assistive resources and accessibility did not happen. He came to college and this office with his IEP and 504 and shared his diagnosis as did the doctors as well as the disabilities associated. What we now know as of last week, is that none of the accommodations were sent to the professors and many are missing that protect a student who has a chronic illness like class notes, excuse for absences, flexibility time to retake and complete assignments and exams, use of laptop in the classroom and with exams and tests, most importantly support with instructions both written and verbal with confirming understanding. Will be sitting with this department tomorrow and it took legal documents as well as Peter to send notes to this department requesting support to get the support. I understand that they would like to see him be independent and eventually he will, but at this first semester start time, he still needs support and assistance with transitions to get settled properly so he can start to be successful. Do you have any road-map to accommodations that were or have been successful with colleges and a student with PANS/PANDAS?

#MightyTogether #PANS /PANDAS

Hi, my name is cameron5. My son has had PANS/PANDAS (diagnosed and in treatment since 2020) and we are looking to understand great accommodations to help in college with an acute-chronic illness like these and all the comorbidities that come with it like, OCD, anxiety, ADHD, IBS, executive functioning deficit, writing and math degradation, and sensory disorder. We understood he would likely become ill sharing a room with others his first semester and sadly was sick for over 4 weeks. This is when we learned that the accommodations that he thought he set into place that summer with the office of assistive resources and accessibility did not happen. He came to college and this office with his IEP and 504 and shared his diagnosis as did the doctors as well as the disabilities associated. What we now know as of last week, is that none of the accommodations were sent to the professors and many are missing that protect a student who has a chronic illness like class notes, excuse for absences, flexibility time to retake and complete assignments and exams, use of laptop in the classroom and with exams and tests, most importantly support with instructions both written and verbal with confirming understanding. Will be sitting with this department tomorrow and it took legal documents as well as Peter to send notes to this department requesting support to get the support. I understand that they would like to see him be independent and eventually he will, but at this first semester start time, he still needs support and assistance with transitions to get settled properly so he can start to be successful. Do you have any road-map to accommodations that were or have been successful with colleges and a student with PANS/PANDAS?

#MightyTogether #PANS /PANDAS

Has anyone been diagnosed with PANDAS or PAWS in their early twenties?

Has anyone been diagnosed with PANDAS or PAWS in their early twenties?

Hi, my name is carolk1955. I'm here because I am in a wheelchair because I had 2 spinal surgeries last year and cannot walk. I also have a cat whose litter pans need to be cleaned and I live alone. I welcome any tips on litter box cleaning and housekeeping I can find here.

#MightyTogether

Oh you had a bad day you say, I don't believe you, just kidding, well after a sore back from all the cooking a cleaning pots pans and dishes, and making homemade scones last night with a fire, and watching Brooklyn on my rounds, I cried this morning waiting for family to be ready to go out, really is that worth it, it was only Bacon, anyways most delicious bacon this side of Ireland was had, and the day goes on, not to mention the hours spent in the beautiful sunshine yesterday with beer n wolves, this is living, I do feel for those in hospitals or nursing homes and hope either that you will be home soon or that you get to go home and experience such things sporadically, make the most of the life you have, times crying and praying are not the only thing, life gets better, love to all of you

Hi, my name is TeaAndPandas. I'm here because I finally received my PANS/PANDAS diagnosis. I got this illness in 2015 so it has been quite the journey. I also have chronic migraine & PTSD. Hoping to find community here <3 #Migraine #PTSD #pans/PANDAS

Hi, my name is Apollo78. I'm here because

#MightyTogether #AutismSpectrumDisorder #Gastroparesis #PANS /PANDAS#EhlersDanlosSyndrome #Anxiety #Depression #Migraine #PTSD #FoodAllergies #POTS #FeedingTubes #GJtube #Dysautonomia #MastCellActivationDisorder

Hi, my name is Apollo78. I'm here because

#MightyTogether #AutismSpectrumDisorder #Gastroparesis #PANS /PANDAS#EhlersDanlosSyndrome #Anxiety #Depression #Migraine #PTSD #FoodAllergies #POTS #FeedingTubes #GJtube #Dysautonomia #MastCellActivationDisorder