Prepare to send your child with PANS, PANDAS (Encephalitis)

Back to School…

This can be a terrifying thought, but school begins exactly 4 weeks from now and we all want to be ready.

My best advice for anyone going through this battle? Understand school is rough for a lot of kids, let alone a child with encephalitis. A kid with PANS (PANDAS) has to battle fuzzy thinking, poor memory, dysgraphia, the need to go to the restroom 27 times a day, poor focus, loss of executive function skills, tics, compulsions, obsessions, separation anxiety can make school seem almost impossible. This may have been a child who was on the honor roll or an average student, it doesn’t matter, this disease can impact any of our children without warning. It’s nothing they did or didn’t do, and it certainly is not their fault but now they have to manage in a system that doesn’t quite understand what happened to them or how to help them. The goal for a parent now is not only for their child to remain in school but also to help them gain some traction in their studies.

Do you have an IEP or 504 in place?

If you have a child with PANS (PANDAS) and are worried about the upcoming school year, call the district offices now and schedule an appointment to talk about obtaining or adding to a 504 plan, or an IEP or even to request that school perhaps begins with homebound or intermittent homebound services already in place as the best option. You have to educate yourself now to make sure that the plan is already in place before your child walks back through those doors for their first day back to school. My favorite books for a child with PANS (PANDAS) in a school setting are

      

I think both of these books are superbly laid out but for our team table talks “PANS, CANS and Automobiles” proved slightly easier when we used it as a visual aid in our meetings. My yellow-highlights throughout each section helped the team build on an already comprehensive and goal-oriented IEP. The “Handbook for Educators” has been purchased over and over as well as it has proved a perfect resource to leave with members of our IEP team. We have been lucky as his team has continued to try some creative strategies for our kiddo struggling with post-infectious autoimmune encephalitis.

How to Navigate the often Complex and Confusing IDEA System of laws and make it work for your child.

In terms of IEP versus 504 requirements and understanding the laws that go along with those requests, we first purchased Wrights Law books in 2014 and in 2018, after we attended a live Wrights Law presentation, we got nice new, updated versions. We find we need to refer to these texts often.

     

 

This particular book is smaller and easier to read than the two above but a great little real-world reminder with real-life situations that other parents have encountered and what they were able to do about it.

I would love to hear your thoughts on other resources that might be available, please share creative ways you found to keep your child in school and learning while recovering from encephalitis.

#PANS #PANDAS #postinfectiousautoimmuneencephalitis #PAE #school #IDEA #IEP #504