Give a Symbol of Hope: The BELIEVE Necklace

PANDAS/PANS – It takes a village.

It takes a village to LEARN and understand a disorder that can affect the lives of thousands. It takes families to SUPPORT and BELIEVE in their children and in a cure. It takes COURAGE to ask questions and continue along life’s sometimes difficult path. It takes COMMUNITY to make a change.

Please support the children and families dealing with PANDAS/PANS by wearing this necklace. Let it be a sign of undying HOPE and a QUEST for a cure.

100% of the profits on this necklace will go to pandasnetwork.org to help fund research and support families struggling with PANS/PANDAS.

A special thank you to Baroni Designs for partnering with us to develop our sterling silver and gold vermeil necklaces.

Blue Buy Now

Believe Necklace Featured

Sterling Silver  $50 ~ Gold Vermeil  $75
Your necklace will come in a gift box along with a card explaining the significance of the piece.

 

OTHER IMAGES
Click to enlarge.

pandas card

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Baroni Box Website

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Believe Necklace Cropped

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$56,000+ Raised For PANDAS Network & MGH PANDAS Clinic

Thank you to Massachusetts Pedal for PANDAS for raising an astounding $56,000 for PANDAS Network and Massachusetts General Hospital’s PANDAS Clinic!!!

The SoulCycle event was organized by PANDAS Network Board Member, Maggie Gold Seelig. Maggie and PANDAS Network are thrilled by this event’s incredible success.

Thank you to all of the event sponsors and to all of you for turning out and for lifting us up with your caring and commitment.


 

Make Sure You Get the Newsletter You Want!

If it seems you never get the important newsletters we send out, it could be because of a simple mistake. When we go through the email addresses that signed up, but never actually get the newsletter, we see a ton of typos. From spelling “yahoo” wrong to forgetting to add the needed (dot). Or, an email provider automatically sees newsletters as spam and “protects” you from it by never letting you receive it.

So, what can you do to make sure you get the important announcements and news that any PANDAS/PANS family, friend, or provider needs to know?

We have some suggestions…

  1. Check/update your profile. – Take a couple seconds to make sure your email is actually in the system. Perhaps you accidentally misspelled something or you changed your email and forgot to let us know.  Update your profile by clicking here.
  2. Add PANDAS Network to your contact list.  – This let’s your email provider know that you want to hear from us! Just add pandasnetwork@gmail.com.
  3. Change what email receives the newsletter. - If you use your work email, that might the problem. Try switching it to your personal email address. We’ve also seen some issues specifically with Comcast, Verizon, and Roadrunner, along with work email addresses.

In 2015, we will be cleaning out the emails that are continuously being “bounced” and not receiving communications. We want you to stay part of the Network! So, please take a few moments to check your profile. THANK YOU!


BE COUNTED! PROVIDE THE OPTIONAL CASE INFORMATION

While checking your profile to see if we have your email address correct, also check to see if you filled in the optional case information. This information helps us paint a picture of the PANDAS/PANS community. The overall similarities have been used to create presentations for conferences, for legislation, and most importantly…TO PROMOTE THE CREATION AND FUNDING OF NEW RESEARCH! All information is kept anonymous and confidential. Thank you.


CATCH UP ON WHAT YOU’VE MISSED

If you’ve been missing out on all of the important updates and announcements, you can catch up by visiting our archived newsletter list at: http://pandasnetwork.org/ourroleandimpact/stay-connected/newsletters/. Happy reading!

 

LAST CALL! Order Your JCAP Before It’s Too Late

Untitled-1The Child Mind Institute of New York and Journal of Child and Adolescent Psychopharmacology have worked to create a single pediatric journal exclusively for PANDAS/PANS.

Ordering deadline is December 15, 2014. The cost of the journal ($100) is low now and will go up dramatically after this FINAL OFFER. No proceeds go to Pandas Network. A small number of parents have ordered this journal and we want to be sure parents understand – purchasing articles one-by-one in the future will quadruple the price of the journal! Please consider ordering one for insurance or treatment purposes!

PANDAS Network will not be able to fulfill requests after the deadline!

 

HOW TO ORDER

Mail number of copies needed, complete shipping address (including telephone number), a check to cover the amount at $100 per copy, or click here to print off a form. Mention you are requesting the special PANS RATE (regular list price of $144). Your purchased copy will not be mailed until January, when publication is printed. Orders must be received by December 15, 2014.

MAIL TO:
Karen Ballen

Mary Ann Liebert, Inc.
3rd Floor
140 Huguenot Street
New Rochelle, NY 10801

*Mary Ann Liebert, Inc. is unable to accept Credit Card or Online Payments. If you wish to pay by Western Union, contact Karen at KBallen@liebertpub.com.

Dr. Swedo Univ. of AZ Grand Rounds Streamed LIVE on 12/11

The University of Arizona Medical Center will be hosting Dr. Susan Swedo of the National Institute of Mental Health at a Special Pediatric Grand Rounds on Thursday, December 11 from 12-1 pm MST.

“Dr. Swedo will review the scientific and clinical data linking GAS (Group A streptococcal bacteria) to OCD and other neuropsychiatric symptoms in PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections). Diagnostic guidelines for PANDAS & PANS will be presented, along with suggestions for management of children in the acute and semiacute phases of illness.”

VIEW THIS PRESENTATION LIVE!

This presentation will be available via live stream by visiting http://streaming.biocom.arizona.edu/home/.

To read the full announcement, visit the University of Arizona Medical Center website.


UPDATE 12/12/2014

View archived video at https://streaming.biocom.arizona.edu/event/?id=25600&play=1&format=sd

 

Radio Interview Featuring PANDAS Experts & Advocates

logoJoin Dr. Larry Kaskel, host of RadioMD’s The Healthy Skeptic, in learning more about PANDAS and PANS. Guests on the show are Leading PANDAS Provider, Dr. Susan Schulman and PANDAS Advocate and Mother, Diana Pohlman.


DR. SUSAN SCHULMAN

Dr. Susan Schulman, Pediatrician and PANDAS researcher, joins The Healthy Skeptic to discuss the devastating  disorder, called PANDAS.

Click below to listen to Dr. Schulman’s full interview.


DIANA POHLMAN

PANDAS Network Executive Director, Diana Pohlman, shares her experience having a child diagnosed with PANDAS on RadioMD’s The Healthy Skeptic.

Diana’s son was seven years old when he was diagnosed with strep throat that would last for months and continually reoccur.

One day he came home from second grade and told his mother very frantically “Mommy, everything is poison! The television is poison, turn it off. The lights are poison, turn them off!” Her young son then told her she was going to die.

Click below to listen to the Diana Pohlman’s full interview.

Columbus, OH Support Group Meeting 12/4

Support FeaturedLive in or near Columbus, Ohio? Come join other parents and caregivers for support. Not much is better than talking to others that understand and can relate!

WHEN: Thursday, December 4th  at 7pm

WHERE: Colin’s Coffee (3714 Riverside Dr., Columbus, OH 43221)

QUESTIONS? Contact this support group coordinator at uamamabear@gmail.com.


PLAN NOW FOR OUR NEXT MEETING!

After the December meeting, the group will meet Thursday, February 5th, same location and same time. Mark your calendar now!

Separation Anxiety in PANS: A Case Study

77% of PANS children exhibit symptoms of a Separation Anxiety Disorder (T.Murphy et al 2014). The case study by Drs. Navkhare and Kalra, The curious case of the “inseparable child”, highlights “the importance of considering the differential diagnosis of autoimmune neuropsychiatric manifestation of streptococcal infection in a child who develops sudden onset behavioral change including symptoms of separation anxiety or school refusal.”

In this study, “a 10-year-old male child was brought by his parents with a 1-month history of irritability, restlessness, and increased anxiety on separation from parents. These symptoms were abrupt in onset, with the child suddenly refusing to play with his sister and other children in his neighborhood. He began asking his parents to be around him and cried if they did not listen. He insisted that his parents and siblings did not move away from him even for a minute to the point of not allowing them to go to another room. Within 2 days, the behavior increased to such an extent, that he would cry at the thought of separation from his parents and siblings.”

According to the study, “He was started on oral cefixime (100 mg bid) with oral acetaminophen (40 mg/kg) for 10 days. On follow-up after 10 days, parents reported complete remission of his symptoms within 5 days of starting medications.”

To read the case study The curious case of the “inseparable child” from the Indian Journal of Psychiatry by Drs. Navkhare and Kalra, visit http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4181186/.

A “Must Listen” Radio Interview with Dr. Susan Swedo

New Jersey Magic 98.3’s Maggie Glynn interviews Dr. Susan Swedo in this 30 minute, information packed radio spot. This is definitely an item worth listening to and sharing!

You can listen to it below or visit the show’s page directly at http://www.magic983.com/maggie-glynn.aspx.

Show 002

PANDAS/PANS affects as many as 1 in 200 children. Maggie interviews Dr. Susan Swedo, Senior Investigator & Chief Pediatrics and Developmental Neuroscience Branch at the National Institute of Mental Health and the national expert on PANDAS/PANS.

Posted 10/12/2014 7:30:00 AM


HIGHLIGHTS

Below is not a verbatim transcript. To listen to show in its entirety, visit Maggie Glynn – Magic 98.3 Show 2 at www.magic983.com/maggie-glynn.aspx.

The October 2014 interview touched on many of the usual, but needed, topics such as an overview of PANDAS and PANS, diagnosing, treating, history, research, etc.  It also discussed some items that are not often mentioned. Below are some the of the highlighted topics we wish to share.

  • A clue of PANDAS is urinary problems. Approximately 50% of children present with some sort of urinary symptom.
  • At this point, we now know more about PANDAS than we do about SC (Sydenham Chorea) and the neurological manifestations that may occur with RF (Rheumatic Fever).
  • PANDAS is not a response to the infection. It is a post-infection occurrence. It can happen at time of infection or several weeks/months after the infection was present.
  • PANDAS doesn’t always happen with the child’s first strep infection.  PANDAS can occur with any strep infection.  It depends what the strep bacteria has on its cell wall and the child’s immune response.
  • PANDAS is a combination of genetic vulnerability and an exuberant response to strep.
  • More children have PANDAS than we realize. PANDAS is not extremely rare.
  • 8 out of 12 PANDAS children who were diagnosed as having strep and were given timely, appropriate treatment with antibiotics, had a resolution of their symptoms.
  • Providers with specific questions about what steps to take for the patients can email the NIH at OCDresearch@mail.nih.gov.
  • Future research at the NIMH will focus on acute onset with eating disorders.

 

 

 

Family Advocacy: Your October Media Stories

Featured Your Story NewsOctober was a busy month for awareness, education, and research. We are happy with the number of families that agreed to open their hearts and homes and share their experience with various news outlets. Below is a “round up” of those stories that made a great impact this month. Thank you.


LIVING WITH PANDAS

New York Family
“Pediatricians should do a simple screening if there are abrupt onset symptoms,” says Dr. Eric Hollander, clinical professor of psychiatry and behavioral sciences at the Albert Einstein College of Medicine and director of the Autism and Obsessive Compulsive Spectrum Program at Montefiore Medical Center and Albert Einstein. “If PANDAS isn’t on their radar, and they aren’t screening, the lack of treatment could lead to more clinical, academic and social consequences.” MORE


BRAIN ATTACK

StanMed (Stanford)
On March 2, 2009, something snapped inside Paul Michael Nelson. In the middle of the night, his parents found the 7-year-old boy stabbing the door of the family’s home office with a kitchen knife, trying to get at a computer that was off-limits after his bedtime. When they stopped him, he flopped around the floor on his knees, barking like a dog. He tore at blankets with his teeth and spoke in gibberish. MORE


PANDAS Awareness Day: Fighting for recognition of misunderstood syndrome connected to strep

silive.com
Days and months dedicated to the awareness of health and illness are so plentiful, their effectiveness may be diluted. But if ever a condition needs to be on the calendar of causes, PANDAS-PANS Awareness does. MORE


Pandas: A little-known disorder with a large impact

The Irish Times
“Two years ago, Ethan started rolling his eyes up and backwards and, soon after, began clenching his fingers and bending his arms. We were told to ignore it and hopefully it would go away,” says Karen.

“One year later his tics had progressed to full body bends and crunching which hampered his walking and he could no longer drink out of a normal cup as he continually spilled. He developed irrational fears, displaying pure terror at things that hadn’t bothered him in the past. He cried easily and had many tantrums.

“He also started wetting his bed and we found ourselves walking on eggshells around him for fear of saying the wrong thing to set him off,” his mother says. “He asked us to help make him better as he wished ‘things would go back to normal’.” MORE


PANDAS: A Puzzling Illness in Children

Quality Health
Multiple visits to four different pediatricians didn’t shed any light on this sudden and bizarre change in behavior. The doctors speculated on a range of possibilities, including allergies, a neurological disorder called Tourette Syndrome, and OCD, and wanted to put Andrew on anti-tic medication.

However, Pam and her husband resisted, believing that there had to be a logical explanation for why their son’s personality and health suddenly declined overnight. “This was a very scary and lonely time,” Pam admits. “Many people didn’t understand what was happening to our son and we barely had a enough information to understand it ourselves, let alone explain it,” she adds. In desperation, she began doing her own research and reached out to a local support group for parents of kids who had similar symptoms. MORE