The 200th Candle Pans/Pandas Awareness

06/20/2023

“He/she needs in-patient.” “Pandas kids should never be in patient” “You need family support!” “Sorry, this family support is not a good fit for you - your kid isn’t ready.” “Here’s the perfect solution!” “Don’t ever go here - but there’s no where else….”“Send your kid to school - he needs the structure.” “Must have vaccinations to attend school.” “Don’t vaccinate your immune compromised kid - he’ll flare!” “What? He’s flaring? Send him somewhere with structure and boundaries!” “Need therapy.” “Therapy won’t stick when their brain isn’t healed.” “See a neurologist.” “See an immunologist.” “Check for mold.” “Check for Lyme.” ”Self care.” “Don’t let it destroy your marriage.” “Don’t neglect your other kids.” “Get brain scans.” “Brain scans won’t show anything.”

And so the circle of P/P life continues.

05/10/2023

05/10/2023

We now have a Dr who will test and treat in Wyoming!!! This is what we have fought so hard for folks! More news to come!

04/28/2023

Health authorities renewed their investigation into reports of a potential uptick in very rare brain infections of kids around the country after officials in Southern Nevada reported another increase of hospitalizations last year compared to previous years. The CDC first launched a probe into the is...

03/31/2023

We are excited to share our new video, "Looking at the Brains of PANDAS PANS Children," a summary of the recent new research from Columbia U!

Link to view research paper: https://www.biorxiv.org/content/10.1101/2023.03.10.532135v1?mibextid=Zxz2cZ

Link to view video of paper:
https://youtu.be/WzA1Pw1xwqM

🧠This video shows HOW the blood vessels of the brain that normally form a blood–brain barrier to prevent immune cells and antibodies from getting inside the brain may be damaged due to peripheral inflammatory and immune processes arising after multiple group A strep infections.🦠

We summarize cutting-edge research in the area of neuro-psycho-immunology that is trying to address how the brain, mind and immune system are affected by the disease and how they interconnect with one another.

💞THANK YOU! To all of our donors and families. YOU made this possible and are providing an understanding of what is happening to our children’s brain through your donations.

💚 Our researchers and doctors persist because early diagnosis and treatment are showing promising outcomes and helping children live happy, healthy lives.

*more to come in our newsletter next week! Make sure you are signed up by going to our website and clicking on the red sign up button at the top! pandasnetwork.org

02/19/2023

Did your child suddenly change overnight with behaviors? Lets talk!

01/09/2023

Learn more about the testing and treatment of Group A Strep Infections in PANS & PANDAS.

Download and share ASPIRE’s toolkit created in conjunction with ASPIRE’S Professional Advisory Board.

https://aspire.care/families-parents-caregivers/toolkit-testing-antibiotic-usage-for-gas-in-pans-pandas/

12/27/2022

Conversation with my daughter... I can't say enough about how amazing she is.. She struggles with Pans disease and it so hard but it definitely does not define her.

Me: I just wanted to tell you how beautiful you are and how proud of you I am. You're so incredibly intelligent. The things you've been able to overcome already in life proves how strong you are. You have the best personality and you're so funny. I'm so proud to be your mom. And I love you more than life itself. Never give up no matter how hard things are and I have no doubt you will change the world.

Lexi: i love you too mom ty so much ik i have not alwas been the greatest daughter in the world but no one will ever love me as muchas you do. even when im rude, mean, scared, lonely, sad, or hurting.
And here is a picture I took.

Always my baby. Always...