NIMH » Director’s Posts about Obsessive-Compulsive Disorder (OCD)

NIMH » Director’s Posts about Obsessive-Compulsive Disorder (OCD). PANDAS

This is where Jamie began his road to recovery. Dr Robert Reichler spoke to Dr Susan Swedo in 2001 during the PANDAS plasmapheresis study at NIMH. Fortunately, by the time we flew back to NIMH Jamie’s PANDAS went into remission with antibiotic therapy. Thank you to all the families and physicians who helped make this happen. It’s about time!

Wheels are turning on P.A.N.D.A.S. in El Yunque Rain Forest, Puerto Rico

When I observe this lizard on an old wheel I can not help but wonder how these two happened to come in contact with each other deep within the rain forest.  My thoughts drift further, LEADING ME ONCE AGAIN TO P.A.N.D.A.S..

I think of Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep (P.A.N.D.A.S.) and wonder why for some children, like Jamie, once they come in contact with strep their autoimmune disorder suddenly becomes apparent. Why is it that a chance encounter with a specific strain of strep can set off an autoimmune response? Why is it that Jamie’s condition went into remission while for other children it is a continuous roller coaster of devastating symptoms as the attacks on the basil ganglia of the brain occur again and again?

Many questions need to be addressed now that we are beginning to raise awareness to this terrifying disorder.

And why is it that not every child tests positive for strep titers although, as some moms have pointed out to me, they do test positive for newer cam-kinese (anti neuronal antibody titers) or other criteria?

Why do some children respond remarkably to antibiotics while others need to go through more invasive procedures like IVIG? Even after the IVIG, however, antibiotic therapy is warranted.

Why do symptoms have to wax and wane to get a P.A.N.D.A.S. diagnosis? Isn’t one occurrence ONE                                                                          TOO MANY?

And Why are there other variants of P.A.N.D.A.S. (P.I.T.A.N.D.) caused by other infectious agents?

Thankfully, The Pandasfoundation began with their “got strep” campaign.

Thankfully,  the topic of P.A.N.D.A.S. is being addressed at autism and OCD conventions.

Thankfully, The Pepsi Refresh Project P.A.N.D.A.S. received it’s 50k grant.

Thankfully,  there are researchers currently looking into answering these questions.

Thankfully, parents are speaking out as they know they must Fight for the lives of their children.

Thankfully,  physicians around the globe are acknowledging that there is a “new” childhood disorder named P.A.N.D.A.S. that begins with a streptococcus infection which then starts an autoimmune response that begins its assault on the basil ganglia of the brain.

We must Stop P.A.N.D.A.S. We must NOT allow it to stop our children. Please help spread the word.

This got strep postcard printed up by the Pandas foundation has been sent throughout the United States and the World.  Know the Signs. More at http://www.pandasfoundation.org

Marci S. Lichtenwalter, Director of MoonDance to the Cure & “Got Strep?” Northwest Regional Coordinator Pandas foundation

We Are Making Much More Than A Splash. Interest In Our PANDAS Children Skyrockets

WHAT A MONTH FOR PANDAS AWARENESS

BETTER THAN I EVER COULD HAVE IMAGINED

BECAUSE OF MOMS WHO STARTED THE FIGHT

WE ARE NOW SHOUTING IN UNISON

OUR CHILDREN NEED HELP. CAN YOU HELP US? WILL YOU HELP US?

AND THE ANSWER IS “WIPE YOUR TEARS. WE ARE HERE.”

Take A look At What is Happening

Pepsi Refresh Project P.A.N.D.A.S. says “Number 6!!  This is truly amazing!! Perhaps Mystery Diagnosis shook up the world a little bit!! Let’s continue to shake it up until the whole world hears!!” (As Posted on Facebook.)

Beth Alison Maloney brings her story to Mystery Diagnosis. Yes, STREP can CAUSE  OCD, Tics, Tourette’s and even Autism. She brings hope to families with children suffering needlessly. Sammy got well and the whole world hears her gutwrenching story.

Kelly Harrity Smith “This is what I am fighting for.”     “My younger son, Ethan, who was severe at one time……..thank God we found out it was strep (PANDAS) and he got proper treatment! He is doing wonderfully right now.”

Can you see what is happening here? One woman begins a FIGHT that takes the whole world by storm. And before we know it, another woman joins in, then families join in, physicians join in, researchers join in, news media join in and soon the WHOLE WORLD WILL JOIN IN.

Pepsi Refresh Project PANDAS is going for $50,000 to Dr Cunninham to FIGHT for our children.

If each one of us gave $10 or $50 or $100 to the Pandas Foundation we could help other families and Doctors FIGHT for our children. Just think of it… $10 everytime we looked at this blog would have raised over $140,000.00 for PANDAS Awareness!

It takes Families and Doctors around the GLOBE to FIGHT for our children. OUR TIME IS NOW.

Give to the PANDAS Foundation and make your donation count.

Vote Pepsi Refresh Project PANDAS.

OUR TIME IS NOW!

Thank you for caring♥

Marci Lichtenwalter, Director of MoonDance To The Cure

PS  Prayers for Dr Robert Reichler who is home recovering from his appendectomy. Our family continues to be forever grateful to you:)

 

Press Release “We Feel Your Pain” P.A.N.D.A.S. to air 6.14.10 on Discovery Health. KNOWLEDGE IS POWER.

PANDAS    www.savingsammy.net info@savingsammy.net

Contact: Marci S. Lichtenwalter Moondance2cure@gmail.com twitter @Moondance2cure

UPDATE 6.15.10 Response overwhelming. We must not stop. Let us continue to unite to help to these very sick children. Our Time Is NOW!

FOR IMMEDIATE RELEASE  Date June 4, 2010

OCD caused by strep. Medical Mystery to air on Discovery Channel June 14th, 2010 10PM eastern 7PM pacific

Seattle, Washington The national TV show, Mystery Diagnosis, will highlight the plight of PANDAS syndrome this month on a family in Kennebunkport, Maine.  It will air on June 14, 2010 at 10:00 PM eastern, 7:00 PM pacific on Discovery Health Channel. But this disorder hits closer to home than you may think. I saw Beth Maloney on the Today Show where she presented  her story about her son’s severe struggles with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep. I responded with my you tube video which 3,675 of you have watched. My you tube video describes what my son, Jamie went through in 2001. Since this time, over 13,000 of you have visited my blog site.

Many researchers, including the National Institutes of Health, believe that PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections) occurs in some children when antibodies that are produced to fight a strep infection mistakenly attack the brain and trigger a sudden onset of behavioral disorders, such as Obsessive Compulsive Disorder (OCD) and Tourette syndrome.

Worldwide, families are finding that seemingly normal kids can change almost overnight after being exposed to STREP. They have noticed how different their child acts weeks or months after a strep related illness . The child may seem hyperactive, moody, and may develop tics. The child may become very particular about the way he/she does certain things. The child’s teacher may say that he/she is not paying attention in class, and the teacher may having trouble reading the student’s writing.

The child may have developed what the medical community has named PANDAS. Basically, it means that when the body’s defences are trying to attack the Streptococcal bacteria  there is some degree of mistaken identity and it also attacks parts of the brain. Some children never have a sore throat, so the parents have no idea the children ever contracted strep.

Affected children can have any combination of the following symptoms:

• Cognitive inflexibility, difficult to reason with, as if stuck on an idea,
• Obsessive/repetitive/compulsive argumentative behaviors,
• TICS (repetitive vocalizations or body movements),
• Tourette Syndrome,
• Attention deficits and oppositional/defiant behaviors,
• Eating disorders,
• Frequent urination,
• Hair pulling.

In our case our child, Jamie had overnight changes which appeared a lot like OCD & Tourette Syndrome. He has been in remission since 2002 because he received immediate high dose and prophylactic antibiotic therapy. The diagnosis and treatment of PANDAS may surprise you.  To localize this national story please contact me via email to learn about our discovery and struggles with PANDAS Syndrome. I have been in touch with MANY families in the Seattle area who are currently facing Pediatric Autoimmune Neuropsychiatric Disorders Associated With Strep. These children are extremely ill and need IMMEDIATE attention.

What: PANDAS Syndrome

Who: Marci S Lichtenwalter, Northwest Region “got strep” coordinator Pandas Foundation.

Where: Seattle, WA

When: June 14th 2010 on Discovery Health Channel 10:00PM eastern, 7:00PM pacific Mystery Diagnosis (Please watch my you tube video prior to this viewing http://www.youtube.com/watch?v=p0EyBTuSODA)

I am also a Seattle blogger, Here’s my blog site. http://www.jamiesstory.wordpress.com

Why: To help educate others about this prevalent disorder

How: The result of a STREP Infection

My book Fighting P.A.N.D.A.S. As we MoonDance To The Cure will be coming out this summer. Interested parties can email Moondance2cure@gmail.com for details on how you can obtain a copy of this book detailing our family’s experience with this serious childhood illness.

Resources: There are many resources available on the internet that may be helpful.

http://www.savingsammy.net/

http://www.pandasfoundation.org/

http://www.nimh.nih.gov/health/publications/pandas/pandas-frequently-asked-questions-about-pediatric-autoimmune-neuropsychiatric-disorders-associated-with-streptococcal-infections.shtml

http://www.ocfoundation.org/uploadedFiles/MainContent/Find_Help/PANDAS%20Fact%20Sheet.pdf?n=4866

June 14th 10pm P.A.N.D.A.S on Discovery Channel Mystery Diagnosis!

OUR TRUE HEROES Fighting For Life, Liberty & Happiness           

#1 Bill Lichtenwalter on USS Enterprise during WWII.#2. Beth Maloney and her book, Saving Sammy gets featured in the Portland Press Herald. She is excited to announce “we have an airdate for Mystery Diagnosis!  The episode will premiere on June 14, 2010 at 10:00 pm on Discovery Health Channel.”    Check this out!     A Must Watch PANDAS airs on medical Mystery. Press link here.

#3. My husband Dr Ken, Jamie and I participated in a research study at Massachusetts General Hospital and conducted by Dr Daniel Geller. We hope and pray new light will come to this crippling autoimmune disorder in the near future. You can email eamancuso@partners.org if you would like more info on this study.

#4. Pepsi Refresh Project P.A.N.D.A.S. did not get their 50k grant, nor did I get an individual artist grant from 4culture, but we will CONTINUE to reach out to the medical community with our plea to HELP THESE CHILDREN IN CRISIS.

#5. Our Leaders in P.A.N.D.A.S. research are getting closer each day. So much is happening back East. I continue to make a plea to our wonderful state of Washington. Please take a closer look at OCD, Tics, Tourettes, Autism caused by an autoimmune response to streptococcus. Let us not be one of the last to recognize and treat this childhood disorder. By then it may be too late.

#6. Thank you to Dr Cynthia Keller & Dr Robert Reichler. You are the leaders in Washington State.

Let us keep Dr Elizabeth Latimer, a true P.A.N.D.A.S. hero, in our thoughts during this time of loss. Our hearts go out to you.

Marci Lichtenwalter, Director of MoonDance To The Cure & “Got Strep” coordinator Northwest and International regions.

Your Vote Can Make THE Difference! Vote Pepsi Refresh Project P.A.N.D.A.S.

Vote P.A.N.D.A.S. Vote P.A.N.D.A.S. Vote P.A.N.D.A.S. Vote P.A.N.D.A.S          Vote Pepsi Refresh Project P.A.N.D.A.S.

http://www.refresheverything.com/PANDAS

In honor of all the children still suffering horribly from this strep related autoimmune disorder causing tics, tourettes, ocd, and a torturous childhood. We Need Funding NOW! Your Vote could count for $50,000.00 in research from PEPSI.

Urgent message from facebook’s Pepsi Refresh Project P.A.N.D.A.S. Good morning!

We’re still back at 26. We need everyone to continue voting AND spreading the word. If everyone posts our link in at least 5 places today, it may make a difference. Post it on your wall after you vote, place it on Craig’s List in the volunteer section, the number of FB groups and pages are endless. Be creative about where you post and come back here and tell us what you did. Maybe you’ll inspire someone else. We need your help! Our kids need your help! Thank you for your support. We need each of you to make this happen.

Refresh the Research! Vote Project P.A.N.D.A.S.
http://www.refresheverything.com/PANDAS

Help Kids in Crisis! Refresh the Research! Vote Project P.A.N.D.A.S. | Pepsi Refresh Everything