Resources

 

Compiled here are a few good websites, blogs, etc. to learn more about P.A.N.D.A.S./P.A.N.S. and how to properly deal with it and treat it. Also included are some blogs that are from the child's or teen's perspective lending you a different view of the situation. I hope this helps.

P.A.N.D.A.S. Network:

 

P.A.N.D.A.S. Network is a non-profit organization whose focus is raising awareness and support for families with P.A.N.D.A.S./P.A.N.S. They are a very good source to learn more about P.A.N.D.A.S./P.A.N.S., find support groups, and get involved in fighting and treating P.A.N.D.A.S./P.A.N.S. They host events and conferences worldwide in order to inform doctors about P.A.N.D.A.S./P.A.N.S. and raise awareness globally. They collect donations in order to fund their events and conferences as well as fund research in order to better understand, treat, and diagnose P.A.N.D.A.S./P.A.N.S.

 

Check them out at http://pandasnetwork.org/

Bearing P.A.N.D.A.S.:

 

Bearing P.A.N.D.A.S. is the personal blog of the founder of Empowered Hands for P.A.N.S. It is about her journey through P.A.N.D.A.S. and Lyme and all of the everyday obstacles that she faces. It will provide you with insight into the day to day life of a P.A.N.D.A.S. child as well as teach about P.A.N.D.A.S./P.A.N.S. from a different perspective. She started Empowered Hands for P.A.N.S. and Bearing P.A.N.D.A.S. because she knew the struggles of P.A.N.D.A.S./P.A.N.S. and how lonely it is. She understood that it is helpful just knowing that someone else is going through the same thing and she wanted to reach out to those around her. She knew she couldn't cure P.A.N.D.A.S./P.A.N.S. but she could make the road less bumpy through support, experience, knowledge, and care.

 

Check it out at http://bearingpandas.wordpress.com/

The Dreaming PANDA:

 

The Dreaming PANDA is a blog written by a 19 year old girl with PANDAS. She was misdiagnosed for 8 years before hearing the word PANDAS and getting the right treatment. She has now gotten an IVIg and is on her way to recovery. She wanted to write about her recovery through a blog to raise awareness and encourage others with PANDAS. Empowered Hands for PANS is very proud of her for sharing her story and would like the world to read her blog too. Her blog is about hope and recovery through the trying times of dealing with PANDAS. It is a good read and will give insight into what a PANDAS/PANS child or teen is feeling.

 

Check it out at http://thedreamingpanda.wordpress.com/

Beth Maloney:

 

Beth Maloney is an author, lawyer, and a mother of a child with P.A.N.D.A.S. She spear headed parent advocacy for P.A.N.D.A.S./P.A.N.S. When her son, Sammy, became ill, they had no idea what was to blame. They went from doctor to doctor, diagnosis to diagnosis, and treatment to treatment with no positive results. Sammy finally got diagnosed with P.A.N.D.A.S. and was treated with high dose antibiotics. He is fully recovered and recently graduated from Carnegie Mellon University with a degree in mathematics and computer science. He also just got a job at google. 

 

Since Sammy became ill, Beth and Sammy were on the today show as well as Mystery Diagnosis. Beth has since written two books on P.A.N.D.A.S./ P.A.N.S., one about her and Sammy's story and the other, a complete guide to P.A.N.D.A.S./P.A.N.S. She has also provided legal service to several families with P.A.N.D.A.S./P.A.N.S. who have battled their state for custody after doctors claimed the parents were mistreating the child because the doctors did not believe in P.A.N.D.A.S./P.A.N.S. Beth works very hard at spreading awareness and knowledge about P.A.N.D.A.S./P.A.N.S. to the masses. She speaks at several conferences each year and is a constant support for families with P.A.N.D.A.S./P.A.N.S.

 

Check out her website and books at http://bethalisonmaloney.com/

 

PANDAS Physicians Network:

 

The Pandas Physicians Network (“PPN”) is an organization that is dedicated to helping medical professionals better understand PANDAS and PANS through real-time information and networking. Specialists from the top academic medical institutions in the United States who have worked with, treated, or studied the patients or aspects of the disorder, have agreed to serve on PPN committees or as special advisors. Because PANDAS & PANS are interdisciplinary disorders, all the relevant disciplines are represented on the PPN committees and the special advisory council. We encourage physicians, researchers and medical professionals to become members of the PPN in order to get updates on the latest research, treatments and developments as well as to communicate with like-minded professionals.

 

Check them out at https://www.pandasppn.org/

 

ACN Latitudes PANS/PANDAS (Lyme included) Forums:

 

ACN Latitudes PANS/PANDAS (Lyme included) forums are support and discussion forums for pediatric autoimmune neuropsychiatric disorders related to strep, Lyme disease, and other infections. 

 

Check them out at http://latitudes.org/forums/index.php?showforum=17

 

International OCD Foundation:

 

The International OCD Foundation is a great resource for information on OCD. They have recently become very supportive of P.A.N.D.A.S./P.A.N.S. and have several pages and references to P.A.N.D.A.S./P.A.N.S. on their website. This is a big step in making P.A.N.D.A.S./P.A.N.S. accepted by the medical community and Empowered Hands for P.A.N.S. is very thankful for it.

 

Check out their website at http://iocdf.org/

Strep Monster:

 

StrepMonster.com was created by a P.A.N.D.A.S. parent, Marcel Cairo. It is known for its "PANDAS stole my child" campaign as well as its awareness posters. There are also several links on there to good PANDAS/PANS sources and lists of PANDAS/PANS treating doctors.

 

Check it out at http://www.strepmonster.com/Home2.html

National Institute of Health (NIH):

 

The National Institute of Health and the National Institute of Mental Health both support the existence of P.A.N.D.A.S./P.A.N.S. They have some very good articles and pages on P.A.N.D.A.S./P.A.N.S. and are a good resource in the research into P.A.N.D.A.S./P.A.N.S.

 

Check them out at http://www.nih.gov/ and http://www.nimh.nih.gov/index.shtml

 

Or check out the main PANDAS/PANS page at http://www.nimh.nih.gov/labs-at-nimh/research-areas/clinics-and-labs/pdnb/web.shtml

Radio PANDAS:

 

Radio PANDAS is an online podcast hosted by StrepMonster.com. They talk about P.A.N.D.A.S./P.A.N.S., how it affects the family and child, and with doctors to get their insight.

 

Check them out at http://radiopandas.com/Home.html