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PANDAS Network .org
 Newsletter 
Treatment and Relapse Survey Results, NORD, and more!
December 6, 2012
In This Issue
Survey Results
NORD
IVIG Study
Autoimmune encephalitis paper by Dr. Finn Somnier
Thank you, Johnny!
Support Group Central
Important Links
  
Seasons Greetings!
  
Dear Parents,
  

We hope you all have a lovely holiday season with your children, community and extended family.

 

Thank you to everyone for making 2012 a productive year. We saw increased media coverage, a new antibiotic study, and the long awaited release of Dr. Swedo's White Paper on PANS. We have each seen what our hard work can accomplish.

 

Next year, we look forward to the opening of Moleculera Labs and the availability of Dr. Madeleine Cunningham's lab test, completion of the NIMH IVIG study, having several new doctors from reknowned hospitals treating, including Massachusetts General Hospital and Stanford Children's Hospital, new research released by Drs. Agalliu and Cleary that looks at the blood brain barrier and t-cell dysregulation, and more.

 

We must keep this momentum going and encourage research as well as new doctors to treat and support for families that are suffering now. Advocacy is a multifaceted endeavor and our children need all aspects of it addressed sooner than later. PANDAS Network. org will need your help to get things done.

 

We hope each of you have a HAPPY and HEALTHY 2013!

 

Warm Regards,

 

Diana Pohlman, Vickie Blavat, and all the Volunteers at PANDASnetwork.org

SURVEY RESULTS - TREATMENT AND RELAPSE By Diana Pohlman
 

I recently reported at the UC Irvine Conference results of anecdotal, self-reports of 200 PANDAS cases followed from 2010-present.

 

In 2010, we reviewed 200 self-reported PANDAS cases (acute, sudden onset) to see if children recovered from PANDAS when treated. We found the vast majority greatly improved and had very minor, if any, remaining symptoms after one year of treatment. This is not scientifically reviewed but with the lack of scientific data available to us, we wanted to give families a message of hope.

 

Here are the results from 2010 :

 

ONE YEAR POST TREATMENT Average Age 4-10 yrs, Boys 2:1 Girls

 

One or two IVIG's:

IVIG with Antibiotics = 88 children total

Improved = 69

Relapsed = 19

12 relapses when "longterm" 2+ years untreated*

 

Antibiotics Only:

Antibiotics Only = 78 children total

Improved = 63

Relapsed = 15

2 relapses when "longterm" 2+ years untreated

 

Other:

8 children did PEX exchange (2 with great success and other with moderate success*)

2 remitted with no treatment

24 did not respond to inquiries

 

*The majority of these children had complex cases: co-morbid autoimmune disease, PANDAS illness untreated beyond 4+ years, autism, or repeated streptococcus infections within first year of treatment.

 

Were there relapses after one year? 25% said yes, mildly: Between 2011-12, I followed up with approximately 80 of the above parents. I was not able to be as thorough with statistics as I returned to work when my own son healed. But for what it is worth - those that improved maintained a majority of improvement but approximately 25% reported "minor upticks" of symptoms (mild ocd, anxiety or tics). Only 2% of families reported major relapses and the reasons for the relapse are, sadly, unclear to me. Sometimes it may just be severity of the attack. This is why opinions from neurologists like Dr. Finn Somnier that acknowledge potential encephalopathy are important.....I think at times this can happen with PANDAS.

 

Parents said minor upticks tended to require an increase in antibiotics (increase from prophylactic to treatment dose) for 5 to 6 weeks, assistance with ibuprofen or prednisone for a few weeks and sometimes and H1 or H2 blocker as well. Each exacerbation lasted about one to two months but NEVER approached the initial onset level of PANDAS.

 

Parents said these mild upticks occurred sometimes (but not always) when the immune process was stressed: cold, flu, fever or cough; strep infection, loose teeth, once with severe food poisoning, and in a few instances, tonsils that were infected were removed. Two parents whose children had a substantial increase in OCD and fears, though not as severe as the initial onset, did IVIG one additional time and the children improved to the point that all OCD/fears were gone. Tics diminished but were not entirely absent.

 

Finally, these reports of improvement match what I hear the majority of the time from the majority of treating experts. There is no evidence that repeated monthly high dose IVIG's are warranted in the majority of cases . However, complicated cases with immune deficiency, autoimmune disease, or autism often report that "one or two IVIG's are not enough."

 

No matter what, it takes 3 to 6 months to see a diminishment of symptoms post-IVIG or antibiotic treatment. I was able to watch evidence of the auto-antibodies and CamKinase II diminishment over 3 to 6 months together with behavioral improvement with Dr. Cunningham's test.

 

The bottomline - early treatment is the key and you parents are saving a lot of lives with your conversations about PANDAS. Let's keep it up.

 

Finally, I'm moved beyond words understanding the plight of so many children. We will do our best to convey your circumstances and struggles.

NORD Lists PANDAS Network .org on website 

PANDAS Network.org is proud to be the first and only PANDAS organization listed on NORD (The National Organization for Rare Disorders) ! You can find us in the Patient Organizations Database.

 

A definition of PANDAS will be provided by a PANDAS Network.org Scientific Advisory Board member soon and added to NORD's Rare Disease Database.

IVIG Study Needs Final Participants

 

The NIMH PANDAS IVIG study needs its final participants. If your child is a recent onset case (6 months or less) with a strep connection, please contact one of the names below to see if your child qualifies.

 

NIMH Study Recruitment:

Rachel Kushner at Yale (203)-737-5588 or email Rachel.Kuschner@yale.edu

Lorraine Lougee at NIH (301) 435-6652 or email lougeel@mail.nih.gov 

 

To learn more about the study, please visit:

http://clinicaltrials.gov/ct2/show/NCT01281969

Dr. Finn Somnier: Autoimmune encephalitis-History & current knowledge

 
Dr. Finn Somnier donated his recent paper on Autoimmune Encephalopathy for parents to review and share. He theorizes that PANDAS could be in the autoimmune encephalitis spectrum of disease.
  
His entire paper can be accessed through the following link (pdf):

Thank you, Johnny!

 

Thank you, Johnny!Last spring, 3rd grader, Johnny from Illinois, developed PANDAS after a strep infection. He learned that other children had the same "rare illness" and that money for PANDAS-PANS awareness and treatment was needed. His mother found help through our parents support network. In appreciation, Johnny raised over $100 during a neighborhood yard sale this summer. His family was able to meet with Dr. Miroslav Kovacevic in Chicago and receive IVIG treatment which has greatly helped him. THANK YOU, Johnny!

PANDAS-PANS Parent Support Group Central By Kari Kling

 

PANDAS Network.org introduces PANDAS-PANS Parent Support Group Central , a new section of our newsletter written by Kari Kling, PANDAS Network.org Support Group Coordinator.

 

We are dedicated to our goal of establishing a support group in every state and to foster support to each group leader by sharing ideas for meetings, ongoing support to your group members, and providing materials for you that other groups may have found beneficial.

 

Please watch for updated messages about PANDAS/PANS Support Groups in future newsletters and on the website. If you have any questions, comments, or suggestions regarding Support Groups, please contact Kari Kling at azpandas1@gmail.com.

Have a Happy and Healthy 2013!

From PANDAS Network.org