Brain Inflamed

On Brain Inflamed we share information from those in the trenches caring for children with autoimmune brain diseases like PANDAS, PANS and Autoimmune Encephalitis. Physicians, Scientists, Parents- all share their best practices. We support through sharing.

In this episode I discuss how to make the holidays a little happier:

When you have a sick child the holidays just aren't the same- they are met with anxiety and honestly in many cases deep sadness over the way things should or "used" to be. 

I break the holidays down into three areas that cover:

Developing a mindset 

Setting boundaries

managing social media 

Establishing priorities

Creating a plan with your family 

Reflecting an evaluating 

 

Resources I reference in this episode:

Boundaries- by. Henry Could and John Townsend 

The Lazy Genius Podcast: The Lazy Genius Podcast

 

 

 

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In this episode I interview the film makers who created "Stolen Childhood"- a documentary on PANDAS. 

 Film Makers:
Christina Magnoli And 

 
 
Plot Outline: 

What happens when familiar signs of mental illness - rapid-onset OCD, tics, hyperactivity - are misdiagnosed?

This is the unfortunate reality for children living with the auto-immune disease known as PANDAS. Many families who turn to medical professionals for answers are often forced into a long journey filled with misdiagnoses and a lack of awareness. "Stolen Childhood" takes an in-depth look at​ the lives of these families, the impact of PANDAS, and the consequences of medical misdiagnosis.

Attend the premiere or attend via web-streaming: 

https://www.stolenchildhood.ca/tickets?fbclid=IwAR3SszBs9unq_-7yEQ6bbU2bIS9AnsplApx-2ctkB7L48I3_D5D-eyIgS7U

 

Learn more about the film HERE

 

 

 
 

 
 
 

Thank you to Erin Kenney for providing the excellent information below:

And to our "Brain Inflamed Podcast Chat" Facebook Group for providing the "additional resources"

You can also find us:

on Instgram Brain_inflamed_podcast

on Pinterest Brain inflamed podcast 

on iTunes: Brain inflamed podcast 

 

You might need and IEP for your child if….

IEP eligibility: if the condition adversely affects the student’s ability to progress in the general education curriculum without special education support and services in the areas of (e.g. processing time to organize information, social emotional, self-regulation, coping strategies, self-advocacy, and (academic areas – math, reading, writing that might be adversely affected during a flare.)

 

Example Accommodations for an PANDAS/PANS/AE Student:

Reduce shorten assignments (content mastery is shown)

Break down/chunk assignments into smaller parts

Preferential seating (where depends on the student’s individual needs)

Clear concise directions

Check for understanding

Allow extra processing time for responses

Extra time on assignments/assessments

Separate setting for assignments

Regular check in with case manager/psychologist

Access to safe person/place

Calming breaks as needed

Student is not penalized with respect to grades when school is missed due to illness/flare

Ability to leave classroom temporarily for self-regulation of tics/anxiety

No penalty for non-participation in classroom due to tics/anxiety

Allow for stress relieving/tic controlling items in class (e.g. stress ball, gum)

Option to move to another seat in the room if a peer nearby is sick

Use of personal computer

Consultation by case manager/counselor/psychologist to general education teacher

Use of pre-arranged signal to teacher when student needs to leave class due to anxiety/tic

 

Example IEP goal areas (note goals must be written in a specific way to be measurable, these are not goals per se, just goal areas/examples):

 

Communicate needs to teacher when there is an anxiety causing situation

 

Develop strategies to use/practice strategies in mock scenario/be able to utilize strategies to calm (e.g. need a break, deep breath, replace negative thought with positive thought)

 

After an episode, return to regulated state by using regulation strategies

 

Regulation – identify negative to positive word choices when dealing with a difficult situation, determine what alternative word choices are available, utilize positive word choices in practice

 

Reframe a negative or fixed mindset to growth mindset in a mock scenario when reflecting on real life situations

 

Work towards utilizing a growth mindset in real life situations at school (generalization)

 

Solve grade level math word problems by determining the function needed to solve and the steps needed to solve the problem correctly

 

Demonstrate appropriate self-advocacy by utilizing check-in appointments with counselor/case manager

 

Other Resources

PANDAS and PANS In The School Setting

https://www.amazon.com/PANDAS-PANS-School-Settings-Educators/dp/1849057443/ref=sr_1_1?ie=UTF8&qid=1539449649&sr=8-1&keywords=pandas+and+pans+in+school+settings

 

PANS CANS and Automobiles- Comprehensive Reference

 

https://www.amazon.com/PANS-CANS-Automobiles-Comprehensive-Reference/dp/1506901875/ref=sr_1_1?ie=UTF8&qid=1539449722&sr=8-1&keywords=pans+cans+and+automobiles

 

Educational-Advocacy-Consulting:

https://www.facebook.com/Educational-Advocacy-Consulting-456788274435531/?fref=gc&dti=286945812079505&hc_location=ufi

 

http://www.peatc.org/

 

Difference between IEP’s and 504’s

https://www.understood.org/en/school-learning/special-services/504-plan/the-difference-between-ieps-and-504-plans

 

 

Episode 6- A Story Of Unconventional Healing

In this episode I interview Lara for an inside look into her journey to heal her son Noah from PANS. After their family hit their "bottom" fighting Noah's, disease they made a difficult decision- the result will inspire you and have you thinking about what's possiable. 

 

Links to mentions in this episode

Therapeutic camp

SUWS

https://www.suwscarolinas.com/

Therapeutic boarding school for boys 

Cherokee Creek School for Boys

http://cherokeecreek.net

Therapeutic boarding school for girls

https://www.lakehouseacademy.com

Ashville Academy

https://ashevilleacademy.com/

** Please note the suggestions above are not official endorsements, nor do these programs focus primarily on treating inflammatory brain disease. 

If you are new to the PANDAS, PANS or AE diagnosis or you’ve been fighting the disease for years- this episode has something for you! We are sharing the TOP 5 TIPS- crowdsourced from seasoned caregivers. 

 

LINKS TO STUFF I DISCUSS IN THIS EPISODE:

Molecular Labs- has a wonderful site full of great information. I especially like the "Parents and Patients" section that offers informational videos. This is one of my favorites:

https://www.moleculeralabs.com/moleculera-labs-pandas-and-pans-video

My Kid Is Not Crazy

a documentary all about PANDAS and PANS. Parents report that his doc, is the visual they need to help family and friends understand their experience. 

Learn more here: https://mykidisnotcrazy.com/

Scroll down to the very bottom and click "watch" for options to order a DVD copy or stream. 

 

PANDAS Physicians Network 

https://www.pandasppn.org/

great handout for physicians

https://www.pandasppn.org/seeingyourfirstchild/

Another good one

https://www.pandasppn.org/flowchart/

National Institute of Mental Health - NIMH 

https://www.nimh.nih.gov/health/publications/pandas/index.shtml

Official NIMH Treatment Guidelines

https://home.liebertpub.com/news/revised-treatment-guidelines-released-for-pediatric-acute-onset-neuropsychiatric-syndrome-pans-pandas

Welcome to the first Brain Inflamed "head space."

"head space" is a monthly-ish version of the podcast where we get a bit more personal. 

In this episode I let you in a bit to what I think- to what works (and dosen't) for our family as it appiles to getting back to school.

  • Avoiding comparison
  • What to say in the hall?! 
  • Kids with tics
  • Afterschool melt down
  • All the activities 
  • Getting to bed 

 

Mentioned in this eposide:

THe Read Alound Handbook 

https://www.amazon.com/Read-Aloud-Handbook-Sixth-Jim-Trelease/dp/0143037390/ref=sr_1_3?ie=UTF8&qid=1535815919&sr=8-3&keywords=the+read+aloud+handbook

 

Fun containers to store those after-school "saver" snacks:

(we love the bees wax wraps)

https://www.uncommongoods.com/product/related/items/beeswax-food-saving-wrap?utm_source=bing&utm_medium=cpc&utm_term=%2Bbees%20%2Bwrap&utm_campaign=All%20Products&msclkid=c5737ecef977166f7e9e2544483b93e7

 

You might have seen on Instagram:

https://www.amazon.com/Mind-Coach-Children-Teenagers-Positive/dp/1886554072/ref=sr_1_2?ie=UTF8&qid=1535815866&sr=8-2&keywords=Mind+Coach

 

This episode is for parents and for school counselors. We get first had information in our interview with school Counselor Stephanie Zak!

Stephanie shares what parents need to know to partner well with their school counselor AND how counselors can identify and help children with PANDAS, PANS or AE. 

 

Books mentioned in this episode:

PANDAS and PANS In The School Setting- AMAZON Link

https://www.amazon.com/PANDAS-PANS-School-Settings-Educators/dp/1849057443/ref=sr_1_1?ie=UTF8&qid=1534854764&sr=8-1&keywords=pandas+and+pans+in+school+settings

 

PANS, CANS and Automobiles

https://www.amazon.com/PANS-CANS-Automobiles-Comprehensive-Reference/dp/1506901875/ref=sr_1_1?ie=UTF8&qid=1534854853&sr=8-1&keywords=pans+cans+and+automobiles

 

IEP & 504 Comparison 

https://www.understood.org/en/school-learning

 

 

 

 This episode is the first in our three- part series for parents AND those serving and teaching children in school (think school nurses, principals, counselors, teachers...) 

Part ONE-  is for those that work in a school

Part Two- is for parents.

BUT listen to both- you'll learn from both prospectives!!

You'll hear from School Nurse, health educator and PANDAS parent Rhonda McCloskey! Rhonda shares valuable tips on how we and work with our schools to reduce exposure for our children. 

 

 RESOURCES MENTIONED: 

Sample Strep Surveillance Letter:

http://pandasnetwork.org/wp-content/uploads/2012/02/Notification-Letter.pdf

 

PANDAS/PANS Essential Facts for Teachers:

http://pandasnetwork.org/wp-content/uploads/2015/04/Handout-for-Teachers1.pdf

*** More excellent resources can be found on the PANDAS Network Website:

www.pandasnetwork.org

Under:

"Research and Resources"

"Tool Kits"

"School" 

Episode One!

Never miss an eposide by following here! 

We'd love to connect with you on Instagram www.instagram.com/brain_inflamed_podcast 

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