PANDAS Network .org Newsletter
Count Yourself In! Be Part of the PANDAS/PANS Movement!
September 10, 2013
In This Issue
Strep Creates Inflammation and So Can Diet
Move Research Forward!
Register for PANS/PANDAS Conference
Update Newsletter Profile
Michigan AAP Conference
Mia's Wish Fundraiser
Support Group Central
Important Links

Summer is ending and school is back in session. We hope families are settling into their routines and returning to school has been a smooth transition. Remember that PANDAS Network .org has a school section where you can reference sample letters to teachers, handouts, and school related links!

Since school has started, it's now the perfect time to sit back and take the PANDAS/PANS online, retrospective survey. Taking the survey can be your way to make sure your child's journey is counted and impacts the future of the PANDAS and PANS movement.

Thank you to everyone for doing their part in creating awareness and moving things forward. We see the drive and determination to push these disorders out of the shadows. The momentum is there, we have to keep it going!

May our children have a HAPPY and HEALTHY school year!

Diana Pohlman, Executive Director, Vickie Blavat, Director, and the Volunteers of PANDAS Network .org

Strep Creates Inflammation and So Can Diet
Many parents of PANDAS and PANS children report sensitivity to diet (sugar, wheat, dairy) during exacerbations.  Particularly, children that have been diagnosed with Celiac Disease seem to have a harder time recovering from the illness.  Although dietary vigilance has long been encouraged in DAN/MAPS Pediatric practices, it isn't well understood by the traditional medical community.
New research in Nature magazine (Wu, et al - Harvard and Univ. Salzburg, Feb 2013) shows that poor diets heavy in salt (aka processed foods and fast foods)
do in fact inspire the production of  T-cell 17 (Th17) which  is a "misbehaving t-cell"  that is produced in many autoimmune diseases:  multiple sclerosis and diabetes for example. 
"We show here that a modest increase in salt concentration.....induces Th17 cell(s)...accelerating the development of autoimmunity....pathogenic Th17 cells provide a molecular insight into a mechanism by which an environmental factor such as a high salt diet triggers Th17 development and promotes tissue inflammation."
Next, Dr. Pat Cleary, Univ. of Michigan, also has shown in a mouse model study  that recurrent strep infections promote an increased Th17 cell response and, in the mice, attack the Blood Brain Barrier (BBB) ( 2010 , Nature 2010).  In working with Dr. Dritan Agalliu (speaking at the upcoming NE PANS/PANDAS Conference), they have further shown these "bad" Th17 cells target the brain and create neuronal and BBB damage.
PANDAS is a real autoimmune process that strep inspires.  This is documented in Sydenham's Chorea that repeat strep prolongs symptoms, but we still have to prove this process in PANDAS children, according to the medical research community. As for PANS, we will need to highlight more research that proves similar linkages from other pathogens.   In the meantime, maintaining a healthy diet will go A LONG WAY in lowering the "bad t-cell response."  From the viewpoint of a PANDAS parent, however, this "mouse model research" highlights the necessity for maintaining, minimally, prophylactic antibiotics while a child is recovering from PANDAS.
Move Research Forward!
Tell The Medical Community About Your Child's Journey with PANDAS/PANS
Research will not move forward without families being recognized as a community and each child's journey being counted!

We need ALL families to participate, including those in established remissions, those who are newly diagnosed, and those who are continuing to experience symptoms. We need to show our similarities. We need to know our differences. We need answers!
Fill out the survey and be counted!

To view the official invitation to participate, please visit

Don't Forget to Register for
November's PANS/PANDAS Conference!
The NE PANS/PANDAS Conference is quickly approaching! If you haven't registered yet, visit Seats are filling fast!

The NE PANS/PANDAS Conference will take place on November 9-10 in Providence, RI. The impressive speaker list makes this one of the most inclusive conferences to date.

The full speaker list, along with cost/location, can be found at the NE PANS/PANDAS Parent Association website.

We hope to see you in Rhode Island this November!

Updating Your Newsletter Profile
 Help US Help YOU! 

PANDAS Network .org recently revised its newsletter signup form to include prompts for entering mailing information and checking if you are a parent/caregiver or provider. Providing this information is OPTIONAL, but would help us greatly with future endeavors. Updating your information takes only a few clicks. Please take a few minutes and help us help you!

Two ways to update your profile:
1.If you received this newsletter in your email inbox, on the very bottom, you will see a link to UPDATE YOUR PROFILE/EMAIL ADDRESS. Click and it will take your from there.

2.You can also update your profile by visiting this link. Type in  your email address. If you are already signed up, directions to update your information will pop up.

Thank you for helping us push the PANDAS/PANS cause into a whole new level of awareness and advocacy. It takes the actions of the whole community to make this successful! 
Parents to Represent PANDAS/PANS at
Michigan AAP Conference

Community Highlight
The Michigan/Great Lakes PANDAS/PANS Support Group will be exhibiting at the Michigan Chapter of the American Academy of Pediatrics' Annual Meeting in Grand Rapids, Michigan on September 20-21, 2013.  The group has designed informational postcards and displays for the exhibit table.

Thank you to to Kristen B., Rachel H., Mary C., and Kristin K. for raising awareness and representing the PANDAS/PANS community at this event!

Mia's Wish Fundraising Event
Community Highlight
Mia is 7 years old. She experienced her PANDAS onset at age 5 with strep. Mia experienced tics, nightmares, obsessive behaviors, hallucinations, and more. She improved greatly with antibiotics and had her first  IVIG in Feb. 2013. Unfortunately, residual symptoms remain and another IVIG treatment is needed.

Mia's Wish
Help Mia's family get the treatment she needs. A fundraiser will be held on September 28th from 3-7 pm at Maggie's Waterfront Cafe in Philadelphia, PA. Cost to attend this fundraising event is $25. Tickets can be purchased by calling  Joe or Kelly at 215-826-8087 or 267-980-9880.

Donations can also be made to:
Mia Parks Pandas Fund at TD Bank, 624 S. Oxford Valley Rd., Fairless Hills, PA 19030

Visit Mia's Wish on facebook.
Click here to read Mia's full story.

 PANDAS-PANS Parent Support Group Central
By Kari Kling
We now have a support group in Nevada! Thank you to Bobbi Osborn for her willingness to lead a group in Nevada. If you are in Nevada and would like to contact her, you can do so at:

Minnesota PANDAS Support Group will commemorate October 9th, PANDAS Awareness Day!   The event is hosted by MN Support Group Leader, Kirsten Tuckey, and include speakers Dr. Nathan Horek, ND, PANDAS author Elizabeth Ann Eberhardt, "Out of the Fog Into the Light" and parent advocates and authors. For details of this event, please visit

Thank you to all of the support group leaders who have reached out to the NE PANS/PANDAS Parent Association to request postcards to distribute advertising the upcoming PANS/PANDAS Conference in Rhode Island. Whether you are a support group leader or just want to help us spread the word, please contact me and I will make sure that you receive the postcards.

With Healing Thoughts,
Kari Kling
PANDAS Network .org Support Group Coordinator
PANDAS Network .org, a 501c3 non-profit corporation