Pandasnetwork.org Newsletter- May 2011
It has been four months since our last newsletter. Thanks to many volunteers we are able to give new parents quick access to other family's to talk with immediately. There has been a lot of advancement in PANDAS awareness in the last year - thanks to many peoples efforts. In this newsletter we highlight several of these NEW achievements: the International OCD Foundation is looking at PANDAS, published case histories, basal ganglia study, parent community outreach, a new e-book on one family's struggle towards a PANDAS cure.
Remember, less than two years ago, there was no PANDAS community and few doctors treating - we are making headway albeit....too slow.
Last July, after the much-anticipated NIMH meeting, we all have been frustrated waiting for the White Paper from Dr. Swedo. Apparently it has been written and will be published....but the date of publication is not confirmed. It will illuminate some of the controversy and some of the positive research that explains this immune disorder. Maybe it will make some doctors more comfortable with helping.
Also, we have a NEW Magnet Fundraiser. - please read about it. All the money will go ONLY to helping with specific efforts to bring awareness to the medical community. We are not in competition with any other PANDAS organization. Remember - we have all only been around for about one year and we volunteers, are full-time parents and/or professionals, and it will take time to figure out how best to work together. I
PandasNetwork is Hosting a Physicians Dinner: Building consensus and confidence is important. Doctors treating PANDAS kids are swamped with new cases. We wanted to help some of physicians in California find a comfortable time to chat about HOW they are treating Pandas. They rarely get time to do that during work week. Some of your donations from 2009/2010 have paid for a dinner happening this Thursday for 6 local doctors to sit and discuss how their treatment protocols are working. The doctors seem really grateful for a chance to meet face-to-face. We will let you know how it goes.
Let's Be Positive! Whether we are going to "march on Washington" seeking money for new research, host dinners or symposiums, it has been much much harder than any parent or activist imagined. So, remain unperturbed and keep pushing on in this marathon....with whomever you trust. This takes a boatload of patience, that's for sure.
Thanks to all -- let's just keep going. Be creative and bold. The doctors need you and want you to make a difference!!!
Sincerely, PandasNetwork.org volunteers
This newsletter was put together for the first time by several volunteers: Angela Butler, Karen Nowicki, Kelly Smith and Vickie Blavat (pepsirefresh gals), Joanne Genet, Tammi Marcoullier, Kari Steinberg, Rochelle Fried, Amy Smith, Mary Ellen Quinn, Cathy Wikos and Diana Pohlman
PandasNetwork.org Magnet Fundraiser
|PANDASNetwork.org Magnet Fundraiser |
P.A.N.D.A.S. Awareness Magnets are now available! For a specified donation, you will receive a 4 � inch circular, indoor/outdoor magnet with the message Know the Symptoms, Change the Outcome�. Whether you display it on your car or on the fridge, you can feel good knowing you are supporting a great cause, educating others, and helping children affected by this devastating disorder.
One Magnet for $10
Five Magnets for $48
Ten Magnets for $90
Shipping is free
We have a limited supply, so please don't hesitate to place your order.
Magnet donations will go to P.A.N.D.A.S. Network.org, a non-profit organization committed to raising awareness, promoting research, and educating parents and medical professionals about P.A.N.D.A.S. Funds go directly to these efforts. For more information on this organization, please visit www.pandasnetwork.org.
Do your part to make a difference! Go to www.pandasnetwork.org and order your P.A.N.D.A.S. Awareness Magnet today!
Personal Story Behind Pandasnetwork.org Logo
|Seven year old boy's sun picture for mother |
What Does the Sun Mean?
P.A.N.D.A.S. Network's emblem is a sun, and it is understandable why this is a good symbol for such an organization. Universally, the sun embodies so much of what we hope for in our journey. It is a beacon of warmth and a life sustaining force.
So, is this just a basic graphic to make the website look nice? No. One of the founders of P.A.N.D.A.S. Network, along with her son, picked the sun as a symbol in 2009 when the website was being constructed. Their reason for doing so was very personal. Long before she had ever heard of P.A.N.D.A.S., she often told her family:
The sun is hope. It rises in the heart of a person who is courageous and optimistic.
It is a beautiful attitude that she hoped her family would embrace as they travelled through life. Then, in 2007, her son was suddenly and severely afflicted with P.A.N.D.A.S. as he started the second grade. Ironically, his class was assigned a task to make a sun. He knew the significance of this symbol to his family. He wanted to make the biggest sun and said, "I'm making this for my mom."
Day by day, after all the others were done, he worked hard and was determined to overcome the P.A.N.D.A.S. symptoms that made this such a difficult project. Despite his teacher's annoyance, he used his recess time each day to painstakingly cut, paint and glue each ray as he held onto the belief that the sun was a symbol of hope. His mother watched him struggle daily but he told her, "I have to do this for you-I'm gonna get better."
It took this boy five months to complete his sun and two years and two IVIG treatments to be symptom free. It was just after his second IVIG treatment, that he suggested the sun as a symbol for the P.A.N.D.A.S. Network's website because of its special meaning of hope. His original project has continued to hang in their home as a real and tangible symbol of courage and optimism.
BIG NEWS - Int'l OCD Foundation Recognizes PANDAS
International OCD Foundation (IOCDF) - Groundbreaking Acknowledgement of P.A.N.D.A.S. and Conference July 29-31, San Diego, CA
As many of you know, 2010 was the first time the International OCD Foundation (IOCDF) invited physicians investigating and treating P.A.N.D.A.S. to its Washington, DC National Conference. Now, in 2011 for the first time, the IOCDF is putting P.A.N.D.A.S. literature in its membership newsletter. This is a courageous step forward in legitimizing P.A.N.D.A.S. as a diagnosis because it is still very controversial in the medical community. With much appreciation we would like to acknowledge those instrumental in moving this forward: IOCDF Director, Dr. Jeff Szymanski, Dr. Evelyn Steward, Dr. Tanya Murphy and Dr. Michael Jenike. Thank you!
The IOCDF yearly national conference will be held in San Diego. Speakers will include Dr. Tanya Murphy and Dr. Beth Latimer. Also speaking, are parents whom many of you are familiar with, Susan Dailey and Keith Moore. There will be many discussion groups and hands-on activities that will be encouraging to parents and physicians. Go to www.ocfoundation.org/conference.aspx to learn more.
A Dedicated Mother's Role
A mother of a young child with P.A.N.D.A.S., Susan Dailey, has joined the Board of the IOCDF and is instrumental in growing advocacy and fundraising. Two years ago, her child had sudden onset of P.A.N.D.A.S. and she found that properly trained therapists for OCD were few in her area. With her own initiative, Susan helped to raise monies for 15 providers to be trained in Exposure and Response Therapy (ERP) in the Southeast area of the U.S. She will be a pivotal leader for P.A.N.D.A.S. at the IOCDF as it launches a new website in 2011.
P.A.N.D.A.S. Network - Parent Stories
We sent in several stories that we hope will be published throughout the year showing a broad range of P.A.N.D.A.S. sudden onset, treatment and excellent remission. Some examples include: a young woman (19 yrs onset) where antibiotics and IVIG stopped debilitating symptoms; a young girl treated within first month of illness with antibiotics with rapid reduction of symptoms; male siblings with nearly simultaneous onset improved within one year of antibiotics; a young male who did not improve greatly on one year of antibiotics but did well after IVIG.
More information can be found at the following links:
Sign up for their newsletter - www.ocdfoundation.org
Follow on Facebook or Twitter - www.facebook.com/IOCDF and www.twitter.com/IOCDF
PANDAS Fact Sheet - www.ocfoundation.org/childOCD.aspx
New e-book on Alternative Nutrition and Healing by Beth Eberhardt
New Book about P.A.N.D.A.S. - Out of the Fog, Into the Light
An inspiring new book is now available about a family's struggle to save their adolescent son from an acute onset of P.A.N.D.A.S. It is called Out of the Fog, Into the Light, written by Beth Eberhardt. Twelve years ago, this family tried traditional antibiotic remedies for this illness and other western medicine treatments - all of which failed.
Beth Eberhardt is an RN certified in Nutrition, Herbal Medicine, Homeopathy, and Holistic Health practices. She documents the alternative health treatments used to improve and heal her sonwho is now a young adult. For more information, please visit Eberhardt's website at www.pandasconnection.com/
Recently she gave a lecture at a Wisconsin School District. Following is a comment on the presentation by Lanora Heim, Director of Pupil Services of Whitewater Unified School District:
Beth Eberhardt's presentation to district-wide staff regarding PANDAS was enlightening both from an emotional perspective and from building a knowledge base. I would like to briefly comment on both aspects. From the emotional perspective, it was great for the staff to see firsthand both what it was like to have PANDAS and also the trials and tribulations of a family who had a child affected by PANDAS. What amazing courage Ms. Eberhardt has to tell the story of her family.
Second, from an intellectual perspective the presentation gave clear medical information supported with statistical evidence. The presentation was also school centered and perfect for the audience of guidance counselors, nursing staff, social workers, and psychologists. Most importantly, school staff left the meeting thinking of several families that they wanted to reach out to that may be affected by PANDAS or OCD.
Having Ms. Eberhardt present to our staff will result in families and children having support in our school district for years to come. We highly recommend her PANDAS awareness presentation for other school districts and school staff.
Many parents are interested in ways of maintaining and healing the immune system. This is a great step forward in understanding how to keep the body strong and aid in full recovery.
The e-book Out of the Fog, Into the Light, can be downloaded to any computer and is found at AMAZON and BARNES & NOBLE websites for only $7.99.
Basal Ganglia Imaging Study by Dr. Harry Chugani
Possible Test for P.A.N.D.A.S. - Looking at the Basal Ganglia?
The rogue white blood cells that cause P.A.N.D.A.S. affect the basil ganglia of the brain. The basil ganglia are several brain structures located in the center of the brain. They function as a communication route to other parts of the brain and are partly responsible for the movement of our body. Other parts of the basal ganglia are involved in memorization, cognitive and emotional processing, and again initiating movement. There is still much to be learned about how this part of our brain functions. It is theorized that P.A.N.D.A.S. causes an inflammation of the basil ganglia. A 1999 study by Ranjit C. Chacko, M.D. showed a connection between OCD and the basil ganglia.
Now, Dr. Harry Chugani at Children's Hospital of Michigan, is studying the potential use of PET scans as diagnostic tools for P.A.N.D.A.S. Dr Chugani states that the basal ganglia are not hard to detect on an MRI scan. In fact, the basil ganglia are large structures. However, the MRI scan is not useful for detection of abnormal microscopic, neurological functioning in the basal ganglia because MRI scans look at anatomy, i.e., tissue density and damage, water displacement, inflammation of tissue (and not the neurological function of this part of the brain). PET scans, or Positron Emission Tomography scans, may be used instead of, or in addition to, magnetic resonance imaging (MRI) scans. This gives anatomic andfunctional information.
The PET scan works by using PK-11195, a radioactive material, to target the inflammatory cells of the brain. This chemical is attracted to inflammatory cells and gives information on how the basil ganglia are functioning. Some of the PET scans on P.A.N.D.A.S. children are identifying inflammation in the basal ganglia. This may be useful as the long awaited confirmation of P.A.N.D.A.S. that parents have sought.
Dr Chugani said, "By finding PET scan evidence of abnormality in the basal ganglia, we may now have a biomarker for P.A.N.D.A.S. Indeed, following IVIG in some P.A.N.D.A.S. subjects, the abnormality in basal ganglia has gone away on repeated PET scan. These studies are rather preliminary, on a limited number of subjects, and much more work needs to be done."
Dr. Chugani is primarily interested in using this scan for NEWLY diagnosed cases and tracking the before and after IVIG treatment. His contact information can be found at www.childrensdmc.org/?id=660&sid=1
New Paper- Three Youths with PANDAS (Jnl of Child & Adolescent Psychopharmacology)
Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus in Identical Siblings (abstract only)
Adam B. Lewin, Eric A. Storch, Tanya K. Murphy. Journal of Child and Adolescent Psychopharmacology. April 2011, 21(2): 177-182. doi:10.1089/cap.2010.0085
ABSTRACT: Termed pediatric autoimmune neuropsychiatric disorders associated with Streptococcus (P.A.N.D.A.S.), these cases of childhood-onset obsessive compulsive disorder and tic disorders resemble the presentation of Sydenham chorea, in that they have an acute onset following a group A beta-hemolytic streptococcal infection (group A Streptococcus), with accompanying neurological signs, and an episodic or sawtooth course. Familial associations of this subgroup of patients remain understudied.
This report provides phenotypic descriptions of three youth with P.A.N.D.A.S. as well as their genetically identical siblings (in two cases of twins and one case of triplets). These cases highlight the potential for environmental influences for discordant presentations in genetically identical siblings.
Despite identical genetics, presentations showed marked variation across siblings (from a full P.A.N.D.A.S. presentation to asymptomatic). Further research into environmentally driven influences such as postinfectious molecular mimicry and epigenetic factors that may influence the manifestation of these pediatric neuropsychiatric disorders will promote our understanding of their prevention and treatment.
New Study - Effective Tonsillectomy of PANDAS Child
Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS): An indication for tonsillectomy (abstract only) - www.ncbi.nlm.nih.gov/pubmed/21466900
ABSTRACT: Children with obsessive compulsive disorder or tic disorders that are associated with streptococcal infections (Group A beta-hemolytic) in the oro-pharyngeal region are given the diagnosis of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (P.A.N.D.A.S.).
Tonsillectomy has been reported to resolve the neuro-psychiatric symptoms in these children. We have a case of a 9-year-old boy who was seen in our clinic with multiple recurrent streptococcal infections of the oro-pharyngeal cavity. He also exhibited neuro-psychiatric symptoms including agitation, hyperactivity, and tics. These symptoms followed his recurrent infections.
Tonsillectomy was performed and in one year follow-up the patient did not have any recurrent streptococcal infections, and his neuro-psychiatric symptoms resolved completely. Guidelines for medical and surgical management of recurrent strep infections in the face of P.A.N.D.A.S. are reviewed.
New York State OT Conference
P.A.N.D.A.S. Presented at the American Occupational Therapy Association's Annual Conference; P.A.N.D.A.S. Added to the New York State Occupational Therapy Association (NYSOTA) Website.
On April 14, two P.A.N.D.A.S. parents presented about P.A.N.D.A.S. and P.I.T.A.N.D. at the American Occupational Therapy Association's annual conference. Janice Tona, PhD, OTR and Trudy Posner, MS, OTR prepared and presented a program that was attended by over 100 people.
In addition to the presentation, Janice and Trudy have added the presentation to The New York State Occupational Therapy Association (NYSOTA) website. This is an excellent resource for Occupational Therapists to learn more about P.A.N.D.A.S. and P.I.T.A.N.D.
We are grateful the NYSOTA has added this information to their site, and it is extremely helpful because many P.A.N.D.A.S. children may benefit from occupational therapy and current clients of OT's may unknowingly fall under the P.A.N.D.A.S. umbrella. When asked to give her insights on how this information can help a P.A.N.D.A.S. parent, Trudy Posner replied:
I think the information that we have put together can be used to help the school IEP/504 team and specifically Occupational Therapists who are treating the students to better understand how PANDAS/PITAND affects the student in school, and how to help that child succeed in the school setting. Understanding that these children do not always have these symptoms, but rather that they may come and go as the child becomes ill is very important. Also, for the Occupational Therapist, it is quite important to understand what the symptoms may be, and that treatment may need to consist more of modifications, assistive technology, and treating the symptoms as they come and go.
Looking forward, Jan and Trudy also have an article scheduled to be published on November 14 in OT Practice. This is the official magazine of the American Occupational Therapy Association.
Many thanks go out from the P.A.N.D.A.S. Network to these moms who are doing all they can to help the P.A.N.D.A.S./P.I.T.A.N.D. community. To view full article, please visit NYSTOA website at www.nysota.org/node/334
Best wishes for a happy, healthy summer. Let's celebrate our children.
On Behalf of PandasNetwork.org,
Director of Parent Outreach