Purchase this Gorgeous Art, Tshirt for Mother's Day, by Emily, age 14 & Help California PANDAS Families With Short Ltr for AB 907
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Celebrate Spring & Mother’s Day

 Our New Artist, Emily!

We are excited to announce our new artist and shirt options to celebrate Spring and Mother’s Day!  This image was hand drawn by our Art by Youth PANDAS Advocates artist, Emily, prior to being formatted into a graphic. It is a reflection of hope and healing, as the hummingbird brings together all of the beauty that was unraveled. Read on to learn more about our artist, including her story and inspiration.

 

Our second column is about California Legislation - please read below.  Thank you.

 

Order yours by April 20th to receive by May 8th!

bonfire.com/celebratemomsandspring

hoodie
Emily photo

This is our story about Emily, age 14

 

She developed PANS in 2020 and is healing.  She is a high school freshman whose diagnosis was unclear and treatment was difficult to find. Today she is healing and happy to share her journey with others.

 

Emily was a typical kid. She had a typical birth and did all of the things that kids do like sports, dance, piano and had lots of friends. She was happy.

 

When Emily was 12 she developed an occasional tic which was a head twitch. The tics eventually progressed into what appeared to be seizures. We saw many doctors and spent hours upon hours in ER waiting rooms, leaving without answers each time. We were scared and fearful of what was happening to the healthy, happy daughter we knew. By 2020, she missed most of her school year. 

 

We eventually brought Emily to a naturopath where they diagnosed her with PANS, triggered by Lyme and mycotoxins. We were happy to have a diagnosis thinking we could finally get help, only to be met with new challenges. Mainstream doctors would not accept a diagnosis from a naturopath and there was little information on Sydenham chorea (the seizure like tics) to differentiate this from PANS tics. Everything was still unclear. 

 

We were faced with another hurdle of setbacks after becoming ill with COVID. The chorea movements and PANS symptoms combined were unbearable. 

 

We were lucky to get an appointment with a great doctor who confirmed her diagnosis of PANS. It was then that her diagnosis was taken seriously. We had progress when we started healing her gut and enrolled her in a brain reintegration program. These two treatments helped us finally start to get the Emily we knew back. We are incredibly grateful these treatments started to give Emily some relief.

 

Today, Emily continues in the brain reintegration program. She has been free from tics for one year and improves daily. She’s happy, healthy and has a new perspective on life. 

 

Using art to get through her flares has been healing for her. We are so proud of her.

 

As her parents, we used to feel sad about all that Emily missed but came to accept that this journey was placed upon us to guide her into becoming the person that she is today: kind, caring, thoughtful, empathetic and full of life. We are grateful for all who have helped us along the way and look forward to even more healing and growing each day.

 

We are very proud of Emily's artwork, which is a reflection of hope and healing, as the hummingbird brings together all of the beauty that was unraveled. Emily's middle name is Rose, so she wanted to incorporate flowers and the hummingbird as a symbol of hope.

 

Healing is very possible, don't ever lose hope.   The Norwood Family

 

Order yours by April 20th to receive by May 8th! 

$26.99 proceeds donated to PANDAS Network 

    bonfire.com/celebratemomsandspring

April California Endorsement photo

Help Out California, Submit your words by Tues. April 18th

 

California children with PANDAS and PANS need your help today. Submit a short statement of support from anywhere in the U.S. for Assembly Bill: AB907.  Copy this template or use your own words: 

 

"My name is Suzie Smith. I am a mom of a PANS child. I live in Long Beach, California. It is critical for our children to have access to standard–of-care medications without insurance

denials. I wholeheartedly support AB 907, Coverage for PANDAS and PANS."

 

 Submit this to the California Assembly Portal by April 18th: 

 https://calegislation.lc.ca.gov/Advocates/

A short youtube was created below if you need to outline the above: 

https://www.youtube.com/watch?v=ot0JnLC8LHg

Put on your calendar for the in-person hearing at the California Capital, Sacramento, 1021 "O" Street, Room 1100 on the 4-25-23 

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    Octapharma IVIG Trial Now Enrolling

    If your child was recently diagnosed with PANS, they may be eligible to take part in Octapharma's new ProPANS IVIG study. The study will examine how well an IVIG study drug works for children with PANS. This study is an opportunity to have access to an FDA-approved drug that may assist with managing PANS, as well as to help advance PANS research. Learn more about the study and enroll here.

    Follow PANDAS Network on social media to stay up-to-date on the latest news in PANDAS/PANS research and advocacy.

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