PANDASnetwork.org Newsletter

December 2010
In this issue
PandasNetwork.org joins ThinkPANDAS
Landmark Paper Affirming PANDAS- Nov 2010
Controversial Paper on PANDAS
What Parents Are Reporting

Dear Parents,

This is a periodic newsletter that is being sent out by an all volunteer network of parents whose children that have experienced this PANDAS illness, some children are healed, some are seeking treatment. The parent network is vital because their are few doctors treating and they are struggling under the burden of our increasing PANDAS cases.

Our Database of Information: We now have approximately 700 families signed up on the site and grow steadily at about 40 to 60 families per month. We are keeping each and every report of PANDAS in a database and your child's story is saved to provide evidence to doctors and hopefully epidemiological investigations.

The power of the internet is astonishing and our numbers are growing quickly -- so we have joined with a non-profit entity, ThinkPANDAS, Inc. because we like their comprehnsive vision for outreach to the medical community. The mission statement is below. More details will follow in the coming months.

QUICK NOTES:

  • NIMH-YALE IVIG STUDY HOPES TO LAUNCH IN JANUARY 2011. This is for newly diagnosed children. There is no word on the details yet.
  • WHITE PAPER on JULY'S NIMH Meeting of EXPERTS. There is no word on when this will be out but it may be timed with the upcoming study. The doctors are likely being careful to lay out an accurate analysis of the meeting and evidence presented.
  • BLOOD TESTS from DR. CUNNINGHAM (CamKinase and antineuronal antibodies results) They express their regret that your results are not coming sooner. This is a small university lab. Over 100 lab samples are pending and receiving more tests are suspended for a few months. They are considering ways to handle the overwhelming number of tests. For newcomers info on this test is found at "Diagnostic Tests" tab on pandasnetwork webiste - bottom of page
  • REQUEST FROM DOCTORS - VIDEOS ARE NEEDED to Educate Medical Community - please attempt to video tape and explain any movements and write in long hand or edit on the video the frequency of the movements - once a day, every hour, intermittent, etc. Many Neurologists do not understand and do not believe that PANDAS movements can be short and irregular in duration and are not typical chorea that they learned about in medical school. You can email them to us or at least, show them to your own doctor!
  • VOLUNTEER to be Phone or Email Support for New Parents: If your child is in recovery mode or recovered from PANDAS and you would like to be of phone or email support to new, often bewildered parents, please email us. We are making an email and phone network. We will be respectful of your wishes and remove you from this list at any time. So far there are 20 active parents.


We have partnered with ThinkPANDAS, Inc., a charitable tax exempt organization. ThinkPANDAS' mission is to increase awareness of the existence of PANDAS/PITAND through educating the global medical and academic communities in an effort to advance detection, treatment and access to comprehensive medical care for patients, and to provide a centralized clearinghouse of responsible information, resources, support and advocacy for patients and their families.

Please look at the www.pandasnetwork.org to see the members of the Scientific Advisory Board and a statement about ThinkPANDAS by its founders, Rochelle Fried and Kari Steinberg. A website will be coming soon. I know there are other PANDAS groups you may be affiliated with, and that is great! Each group can work to disseminate information and attempt to drive funding for research.

LANDMARK PAPER

Jrnl of Child Psychopharmacology-Nov10-Murphy, Kurlan, Leckman (pdf file)

This paper was written last month in response to the recent upsurgence of PANDAS families. It is a gift of time, energy and compassion on behalf of the doctors who wrote this paper and and the doctors who have treated our children and shared information. THANK YOU DOCTORS!


The doctors call on our advocacy groups to work with them to determine how best to recognize this illness and heal our children.


They discuss why antibiotics, IVIG or plasmaphoresus may be helpful to parents but cannot, because clinical trials are few, yet outright tell the medical community how to treat PANDAS cases specifically. Our parent network will have to continue to inform them of our successes.

Please take this paper to any physicians you know of!! It is the most comprehensive analysis of PANDAS and tentative treatments done to date.

Attached is a more simplistic summary of this paper put together by parent volunteers. We hope you find it helpful.

Summary - Murphy et al 2010 (pdf file)

CONTROVERSIAL PAPER

Jrnl Child Neurology-Nov.10-Mink, Kurlan (pdf file)

Four cases were pondered here that had acute onset of physical and psychiatric symptoms following probable illnesses. The main case history reviewed sounds PANDAS-like though the child is 19 yrs old and post-puberty. PANDAS is usually with younger children under age 12. This paper was written by two physicians who have backgrounds in Neurology and Tourettes - in other words primarily movement disorders and question the PANDAS "hypothesis."


This is an excellent paper to understand the confusion Neurologists often express surrounding PANDAS patients where movement issues are present. They discuss various forms of encephalitis that have mood and movement issues. They discuss Sydenham Chorea with accompanying Rheumatic Fever. They do not express and opinion on treatment however do recommend doing MRI's and spinal taps which historically shows NO results for PANDAS kids.

They further confuse things by stating, "Apart from the importance of accurately diagnosing Sydenham Chorea, it is unclear if.....there is value in separating out cases dominated by tics and OCD symptoms..." page 3 mid-2nd column. PANDAS children usually have intermittent, subtle and fleeting movements that are difficult apparently to classify as chorea for most Neurologists as 100's of PANDAS parents can attest.

HOWEVER, they do ask Neurologists to be CURIOUS and listen to the child's clinical picture. That is a first step.


They do ask for case histories to be carefully documented and videotapes be made of children suffering with movement problems with PANDAS. We can surely supply them with some videotapes................


Antibiotics will almost always calm things greatly, though not 100% --- it is too bad they do not mention this.

What Parents Are Reporting


Multi-Generational Family Reports: There are six reports now from families that the PANDAS syndrome has been experienced for at least two to three generations. This is not the norm but it is an interesting clue perhaps for all of us that there is a lack of proper immune function in relationship to the streptococcus bacteria and perhaps other bacteria or viruses as well. In these family reports the symptoms of PANDAS diminished in the late teens to early twenties - and the illness was equally divided amongst men and women.

Antibiotics, Steroids, IVIG or Phoresus: The Table of 200 Cases on pandasnetwork.org will be helpful for review of the following. There are more treated and recovered and a smaller percentage of treated but NOT RECOVERED cases that have not been added to this table.

The theme we are hearing over and over is: ONE YEAR OUT FROM TREATMENT IS USUAL, GRADUAL, FULL RECOVERY PERIOD. IT IS SLOW and DELIBERATE with setbacks at times, but HEALING GENERALLY HAPPENS. (Swedo and others report full recovery between 83-87% of the time with one treatment of IVIG or plasmaphoresus.)

The case for antibiotic only treatment: Some children get better (according to Dr. Tanya Murphy, Dr. Rosario Trifiletti and from a few reports I have heard) on a several month course of various antibiotics. A parent will have to watch and decide if improvement is substantial enough.

Some children, like my child, mildly improve on antibiotics but the syndrome is not stopped even after one year of antibiotics. These children then get IVIG or Phoresus and all report being gradually improved at three months, six months and then recovered at one year. Just like many forms of severe autoimmune reactions that cause psychiatric and/or physical movements (like Sydenham Chorea (SC), or rare forms of autoimmune encephalitis) it is important to watch healing over a several month period. PANDAS is rarely, but yes sometimes, that severe based on the reports parents are giving us.

CASES STRUGGLING WITH RECOVERY: I do not like making blanket statements and I'm not a doctor but the reports I am hearing are that children having a tough time with recovery often have the following one or two of evidence of possible immune deficiencies: extreme tooth decay to the root (with children ages 4-10); iron deficiencies, chronic Upper Respitory infections; a history of repeat antibiotics needed to clear various infections; failing to hold vaccine(s), repeat strep, repeat pneumonia, skin lesions or outbreaks as of yet undiagnosed; staph infections; siblings or parents with strep infections or carrier state issues in the home.

What is disturbing is that there is a disconnect between the Pediatrician and pondering these chronic issues and the need to do a thorough immunological workup with a reputable Pediatric Immunologist. There are many cases now of young children being diagnosed as PID (primary immune deficient); CIVD (common immune variable deficiency) or Celiacs who prior to the PANDAS illness were not diagnosed as such.

Many PANDAS cases do not have an immune deficiency issue. Again, the above is mentioned to help you investigate unusual symptoms that your Pediatrician may have ignored.

Co-infections need to always be considered because other infections on top of PANDAS symptoms weaken the body and it is harder to repair: look for mycoplasma pneumonia, tonsil and adenoid problems, chronic ebstein's barr, lyme disease - often the standard Western Blot is sufficient but if in a lyme-ridden State in particular, Igenex may be wise--but it is controversial.

Once in awhile - there are a few cases that are just difficult to treat - the vast majority are not. These families I know of and I hope they will provide clues to us all....as they find the way to heal their child.

Confusion on the Forum - Suggestions to Make it More Helpful: www.Latitudes.org/forums This is hands down THE best forum for parents to meet out there. But the forum is getting very large now and is tricky to navigate. It is a great tool and a comfort .... The forum helped me find other parents to help me when I was at my lowest points.

I have a few suggestions when sharing ideas with other parents:

Try to get on the phone and talk to the parent and listen to each child's case history

Ask how long their child been ill, i.e., when was the Acute Onset? A newly ill child (within the last few months) and one that has been ill for two or more years with no treatment - will have different results from treatment. The longer one is ill, the trickier it often is to calm things down.

Compare Immune Histories. For example, a relatively healthy child with a sudden onset of PANDAS may repair differently than a child with chronic health issues.

Compare PANDAS Histories. There are many parents that have recognized PANDAS exacerbations for a number of years. Often each exacerbation (according to Swedo and others) becomes more difficult to calm down.

Ask about the State or Country they live in. Often certain strains of strep behave differently in various areas of the U.S. and certain antibiotics may be more effective in those areas. Recently there was an outbreak of PANDAS cases in Boston and PA/NJ borders with back-to-back reported cases to PANDASNetwork and doctors in these areas.

We hope this is helpful to you and I find it distressing that the parents have to lead the way with this illness, only a few doctors nationwide are working really really hard to treat our kids. The new study will help provide more answers -- but it doesn't come soon enough.

Sincerely, Diana Pohlman (California)

Contact Information
pandasnetwork@gmail.com