Thoughts on being a parent of a medically complex child after today
The endless advocating is always 100% worth...
Blog
June 25, 2021
Getting Started with 504 & IEP Plans
You are your child’s best advocate, and we are here to help! The 504 and IEP planning process may seem overwhelming, but these educational sections will help you navigate the...
June 25, 2021
504 Plan Basics for PANS PANDAS
Read Getting Started with 504 & IEP Plans first. Many PANS PANDAS kids will qualify for a 504 plan. A 504 plan will provide accommodations for the educational program within...
June 25, 2021
Individualized Education Plans (IEP) for PANS PANDAS
Read Getting Started with 504 & IEP Plans first. Special Education is provided through the Individualized Education Program (IEP) for a student with a qualifying disability. The primary purpose...
June 25, 2021
Writing Requests for Assessments & Services
How to Ask for an Evaluation Written Request – Put all requests and correspondence in writing. Ask for an evaluation and explain why Provide medical documentation of diagnosis and supporting...
June 25, 2021
IEP or 504 Meeting – Preparation, Participation, & Follow Up
Prepare for an IEP or 504 Planning Meeting Create a list of your child’s areas of need. Before the meeting, list your child’s struggles and deficits. Know that it is...
June 25, 2021
Prior Written Notice
Prior Written Notice (PWN) is a written explanation of why the district proposes or rejects a change to a student’s IEP. This includes if you want to challenge the district’s...
June 23, 2021
ASPIRE Lecture on PANS PANDAS with Susan Swedo, MD & Gabriella True for Comitato Italiano Genitori Pandas
Susan Swedo, MD and Gabriella True of ASPIRE - Alliance to Solve PANS & Immune-Related Encephalopathies provide a brief overview of PANS...
Obsessive-Compulsive Disorders and Functional Urinary Disorders: A Fortuitous Association?
Ng QX, Lim YL, Loke W, Yeo WS, Chee KT. Obsessive-Compulsive Disorders and Functional Urinary Disorders: A Fortuitous Association? Behavioral Sciences. 2021; 11(6):89. DOI: 10.3390/bs11060089
- Patients with OC symptoms appeared to have increased occurrence of functional urinary symptoms, e.g., overactive bladder, increase in urgency, frequency, incontinence and enuresis.
- This is even more common amongst patients with PANS and PANDAS, as only OCD
June 15, 2021
Medication Log Sheet
PANS PANDAS is medically complex. In order to have an informed discussion with your providers, it can be helpful to track symptoms, exposures to triggers, and medications. This Medication Log...
June 15, 2021
Sample Letter – Section 504 Determination Request
Keep a copy for yourself. Hand deliver and ask for a date stamp or send with Return Receipt to establish timeline or email as an attachment. (Parent/Guardian Name) (Home Address)...
June 15, 2021
PANS PANDAS Appointment Checklist & Worksheets
Print and take to your next appointment! You do not want to leave an appointment with more questions than you had going in. You need to clarify the lab results,...