Brain Inflamed: Recent Episodes
braininflamed
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.
What's a family contract?
Do we really need one?
The what's and hows... in this episode.
BEFORE you listen go to www.braininflamedpodcast.com
SUBSCRIBE- we'll send you the template described in this episode as a big thank you!
In this episode I share our story, "our" as in my personal story and journey with my daughter through AE. The interview was conducted by WCNC's Savannah Levins and originally published on her podcast "Unbroken" - you can find her podcast anywhere you listen to podcasts. I highly recommend it... many inspiring stories!
The term Integrative medicine gets used a lot these days, but what is it?
In this episode I interview Dr. Ana-Maria Temple- traditional pediatrician turned Integrative...why? You'll have to listen.
She shares top ways we can help ALL children live their most healthy lives, even if we don't have access to an Integrative Pediatrician.
Dr. Temple's Practice: https://www.integrativehealthcarolinas.com/
More information on EMF's https://ultimatehealthpodcast.com/nicolas-pineault-emfs/
I highly recommend this book: https://www.amazon.com/Non-Tinfoil-Guide-EMFs-Stupid-Technology-ebook/dp/B078KKQW6D
CME Conference on post infectious October 5th:
2019 Autoimmune Encephalitis Post Streptococcal Evaluation & Treatment; A Way Forward
https://medstar.cloud-cme.com/default.aspx?P=5&EID=5801
Dr. Latimer:
M. Elizabeth Latimer, MD received her medical degree from Tufts University School of Medicine in Boston Massachusetts. She completed her residencies in Pediatrics and Neurology at Walter Reed Army Medical Center in Washington, DC, with special certification in Child Neurology. She served as chief of the Child Neurology Division at Georgetown University Hospital in Washington, DC for five years, prior to practicing at Fairfax Hospital in Virginia.
In 2000, Dr. Latimer opened her practice of Child and Adolescent Neurology in Bethesda, MD, where she provided treatment for autism, ADHD, migraines, and other neurological conditions. She’s currently practicing out of her office in Washington DC conveniently located in the heart of Georgetown. In addition to her general neurology and headache practice, Dr. Latimer specializes in caring for PANDAS patients, and cerebral palsy patients who require spasticity management.
More about Latimer Neurology:
https://www.bethlatimermd.com/about/
"Boundaries and Caregiving"
The two can co-exist- in this episode I discuss why boundaries are important, dispel a few myths, and talk specifically about how "boundaries" can look a little different when your child is struggling.
In this episode I quote from the book "Boundaries" by Dr. Henry Cloud & Dr. John Townsend
In this episode: practical advice for parents and caregivers who want to help their kids talk to peers about their "Difference."
This applies to really... any difference.
A link to the conference mentioned it the episode
http://encephalitisconference.pandasnetwork.org/?fbclid=IwAR0KmUmmzHaO2WOEl8CA1XXh2r0Hn0pkNhDKR-MRg5kuxOs5tB4eMhKKPR8
In this episode I discuss the when's who's and how's around discussing your child in the educational setting.
Mentioned in this episode:
The Holiday Docket- by The Lazy Genius www.store.thelazygeniuscollective.com
$22 until September 5th.
"Everything You Need to Know about IEP's"
https://braininflamed.podbean.com/e/everything-you-need-to-know-about-ieps/
PANDAS and PANS in the School Settings- A Handbook for Educators
available on Amazon
"School Refusal" the misnomer assigned to the manifestation of post infections brain inflammation (PANDAS, PANS, AE).
What it is, and is not.
When do you push a for school attendance and when do you put healing first.
MENTIONED in this episode:
Rogers Behavioral Health:
https://rogersbh.org/locations/oconomowoc?utm_source=local&utm_medium=organic&utm_campaign=gmb
SUWS of the Carolinas:
https://www.suwscarolinas.com/
TRAILS:
https://trailscarolina.com/
In this episode I discuss tips on how to prepare for and have a productive conversation with your child's doctor.
Seeing your first patient with PANDAS:
https://www.pandasppn.org/seeingyourfirstchild/
National Institute of Mental Health:
https://www.nimh.nih.gov/research/research-conducted-at-nimh/research-areas/clinics-and-labs/sbp/information-about-pans-pandas.shtml
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
.
In this episode I interview the film makers who created "Stolen Childhood"- a documentary on PANDAS.
Film Makers: Christina Magnoli And Sara Van Vugt 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"
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