PANS/PANDAS, School Accommodations, IEPs, 504 Plans & Invisible Disabilities in Education
Week 3 of our 6-Week Series to Help You Navigate the School Year.
Back-to-school season brings excitement, but for families raising children with learning differences, disabilities, or unique educational needs, it can also bring uncertainty. That's why we're launching a six-week series designed to walk alongside you through the school year— from those first-day nerves to the moments that call for real advocacy. Each week, we'll share practical guidance rooted in The Levy Way™: proactive, collaborative, and centered on the whole child. Whether you're preparing for day one or navigating a bump in the road months from now, our goal is the same: to help you advocate with clarity and confidence, every step of the way.
Back-to-school season is supposed to be about new teachers, fresh notebooks, familiar routines, and a new year of possibility.
But for families navigating PANS or PANDAS, returning to school can be much more complicated.
A child may look perfectly fine walking through the school doors while simultaneously struggling with anxiety, OCD-like symptoms, tics, cognitive fatigue, sensory sensitivities, school refusal, emotional regulation, attention, processing, handwriting, or a sudden decline in academic performance.
This is where PANS/PANDAS-informed educational advocacy matters. At Levy Educational Advocacy, we believe that when a child's functioning changes, the educational conversation needs to change too.
PANS/PANDAS and School: The Child the School Sees May Not Be the Whole Child
One of the most important principles of The Levy Way™ is seeing the whole student.
PANS/PANDAS can create an educational picture that doesn't always fit neatly into a traditional disability category.
A student may have been progressing appropriately and then experience a significant change.
A student who once separated easily may suddenly experience intense school anxiety.
A child who could previously complete assignments independently may suddenly require substantial adult support.
A strong writer may suddenly struggle to get thoughts onto paper.
A student who knew the material may suddenly have difficulty accessing it.
And sometimes, the most important educational data is not a test score.
It is the change over time.
This is one reason PANS/PANDAS and invisible disabilities in education require thoughtful advocacy.
PANS/PANDAS Is Not Just a Medical Conversation
When a child's health changes, families naturally focus first on medical care.
That is appropriate.
But when symptoms affect a child's ability to access, participate in, and make progress in school, an educational conversation also needs to happen. The school team needs to understand the following:
What has changed?
When did it change?
How is the change affecting learning?
What does the child look like at home versus school?
What supports are currently working?
What supports are no longer sufficient?
What does the educational data show?
What does the child need to access instruction?
The goal isn't to ask the school to diagnose PANS/PANDAS. The goal is to help the school understand the educational impact. That distinction is at the heart of effective special education advocacy.
Don't Start With the Diagnosis. Start With Educational Impact.
This is a critical distinction in PANS educational advocacy and PANDAS educational advocacy. A school team may not be the appropriate team to determine the medical cause of a child's symptoms. But the school absolutely needs to understand the student's functioning within the educational environment.
Instead of: "My child has PANS, so the school needs to do X." Try: "Since this change began, we have observed significant changes in anxiety, stamina, handwriting, attendance, task completion, and access to instruction. We would like to review the educational data and determine what supports and services are needed."
That shifts the conversation from diagnosis to Access → Impact → Data → Need → Next Step
That is advocacy.
What Should You Tell Your Child's School Team?
Start with a concise educational story.
1. Explain What Your Child Could Do Before
Be specific. What was your child's baseline?
Reading level
Writing ability
Math performance
Homework independence
Attendance
Classroom participation
Social functioning
Executive functioning
Emotional regulation
Transitions
Stamina
2. Explain What Changed
Avoid general statements like "Everything is harder.” Instead, use statements more like, "Before January, she independently completed 30-minute writing assignments. Since the onset of symptoms, she frequently becomes overwhelmed after approximately 10 minutes and requires adult support to initiate and sustain the task."
Specific information gives the team something they can observe and measure. This type of documentation can become especially important when discussing PANS school accommodations, PANS IEP services, or a 504 Plan.
3. Document Patterns
Look for patterns involving:
Time of day
Attendance
Academic tasks
Transitions
Sensory environments
Fatigue
Anxiety
Cognitive load
Changes in handwriting
Processing speed
Emotional regulation
Social interaction
Patterns matter.
4. Bring Data
Your educational story should not rely solely on memory. Be sure to bring the following for review:
Work samples
Progress reports
Assessments
IEP progress reports
Attendance records
Teacher observations
Intervention data
Reading and math data
Writing samples
Communication logs
Relevant medical documentation
Parent observations
PANS/PANDAS School Accommodations: Start With the Individual Student
Families often ask: "What school accommodations does a child with PANS or PANDAS need?" There is no universal list. The right accommodations depend on the student's documented educational needs and how symptoms are affecting access to school. Depending on the student, the team may need to consider supports involving:
Reduced cognitive load
Predictable routines
Explicit directions
Chunking of assignments
Extended time
Reduced writing demands when appropriate
Alternative ways to demonstrate knowledge
Executive functioning support
Sensory considerations
Movement or regulation breaks
Flexible transitions
Attendance or re-entry supports
Counseling or social-emotional support
Assistive technology
Specialized academic instruction
Progress monitoring
Home-school communication
The question is not, "What accommodation does PANS get?" The better question is "What does this student need to access education?"
PANS, PANDAS, IEPs and 504 Plans
A diagnosis or medical concern does not automatically determine eligibility for special education. However, when a student's health-related or disability-related needs interfere with educational access, families may need to consider whether an evaluation, eligibility discussion, or review of existing supports is appropriate.
For students who already have an IEP or 504 Plan, a significant change in functioning may warrant a conversation with the school team about whether the current plan still reflects the student's needs.
The educational question should remain centered on what the student needs to access and make progress in school. This is where an experienced educational advocate can help families organize information, identify educational concerns, prepare for meetings, and keep the conversation focused on the student's needs.
Invisible Disabilities Require Visible Documentation
PANS/PANDAS-related educational challenges may not always be visible to someone who sees your child for five minutes. A child can smile, participate in conversation, and appear "fine" while expending enormous energy to remain regulated. That is why invisible disabilities in education require us to look beyond surface-level observations.
Ask: What is the child actually able to access independently?
And: What is the cost of accessing it?
A student who completes an assignment only after an hour of distress has technically completed the assignment. But that doesn't necessarily mean the educational approach is working.
Your Child's Work Samples Can Tell an Important Story
One of the most powerful things a parent can bring to a meeting is a collection of work samples across time.
Don't just bring the hardest assignment.
Bring the before and after.
Before: What the student was able to produce independently.
After: What the student is currently producing.
Then ask, "What do we think is contributing to this change, and what does the student need educationally?" That question invites collaboration while keeping the conversation focused.
The Levy Way™ Parent Prep
Before you walk into your next school meeting, ask:
What changed?
When did it change?
What evidence do I have?
How is it affecting education?
What has the school already tried?
What worked?
What didn't work?
What does my child need now?
And most importantly:
What is the next right step?
You do not need to walk into a meeting with every answer. You need to walk in with a clear educational story.
The Goal Is Not to Prove Your Child Is Struggling
The goal is to understand why the child is struggling and determine what can be done.
That distinction changes the entire conversation.
Instead of asking, "Why won't my child do this?" we ask, "What is getting in the way?"
Instead of, "She's refusing,” we ask, "What is the function of the behavior, and what support does she need?"
Instead of, "He used to be able to do it," we ask, "What changed, and what does the data tell us?"
That is the shift from frustration to advocacy.
The Levy Way™ Bottom Line
PANS/PANDAS can create a complicated intersection between health, learning, behavior, attendance, regulation, and family life. Families should not have to choose between addressing the medical picture and advocating for the educational picture.
Both matter.
Your child's medical team can address medical care. Your child's educational team can address educational access. And parents can help connect the dots by documenting the changes, communicating clearly, and bringing the child's whole story to the table.
Because when a child's functioning changes, the educational plan may need to change too.
See the whole student.
Follow the data.
Name the impact.
Build the right support.
That is The Levy Way™.
Educational Advocacy Guide: PANS/PANDAS Back-to-School Checklist
Before your child's first school meeting or check-in, gather:
Baseline information showing what your child could previously do
Recent work samples
Current academic data
Attendance information
IEP or 504 Plan, if applicable
Recent progress reports
Teacher observations
Parent observations
Documentation of significant changes in functioning
Relevant medical documentation to share with the school, when appropriate
List of current supports and accommodations
Examples of what is working
Examples of what is not working
Questions about educational impact
Specific requests for data collection or progress monitoring
Remember:
Medical diagnosis → Educational impact → Data → Supports → Progress monitoring. You don't have to have all the answers. You do need to make sure your child's story is being seen.
Disclaimer
This resource is educational and advocacy-focused. It is not medical advice and is not intended to diagnose or treat PANS/PANDAS. Families should work with qualified medical professionals regarding diagnosis and treatment and with their child's school team regarding educational supports and services.
This blog post is part of Levy Educational Advocacy’s six-week series designed to walk alongside you through the school year. Each week, we'll share practical guidance rooted in The Levy Way™: proactive, collaborative, and centered on the whole child. Whether you're preparing for day one or navigating a bump in the road months from now, our goal is the same: to help you advocate with clarity and confidence, every step of the way. To read the full series, click here.