An update from Diana (PANDAS Network)

[thereishope]

Here's an email from Diana (PANDAS Network). Thought I'd share with everyone...

 

 

Dear Families,

 

A doctor from Stanford Univ. just sent me this. I know everyone is looking things up and you may have already seen this.

 

Dr. Swedo reached out to me last week and would like to review all our stories. I know I need more info from some folks but let me get organized first! We have over 300 families now.

 

She and Leckman and Cunningham are fighting to get the IVIG study resurrected by this summer. Swedo says she understands now that we parents are loosely banded together and not under the HIPPA regulations of her past studies -- that with our help she can help right up clinical diagnostic guidelines for pandas treatment.

 

Also a neuro/psycho survey of sorts will be sent around to all of us after the first of the year.....to help better explain the medical community what the "sudden onset" of pandas looks like.

 

I heard thru the grapevine that Dr. D. Geller is proceeding with an the "Saving Sammy" Augmentin-only study.

 

I imagine controversial things and delays, etc. will abound in the next year -- but I think this are going to get better for future pandas kids

 

 

 

Association between intracellular infectious agents and Tourette's syndrome.

Krause D, Matz J, Weidinger E, Wagner J, Wildenauer A, Obermeier M, Riedel M, Müller N.

Department of Psychiatry, Ludwig-Maximilians University Munich, Nussbaumstr. 7, 80336, Munich, Germany, Daniela.Krause@med.uni-muenchen.de.

The underlying pathophysiological mechanisms in Tourette's syndrome (TS) are still unclear. Increasing evidence supports the involvement of infections, possibly on the basis of an altered immune status. Not only streptococci but also other infectious agents may be involved. This study investigates the association between the neurotrophic agents Chlamydia, Toxoplasma and TS. 32 patients with TS and 30 healthy matched controls were included. For each individual, IgA/IgG antibody titers against Chlamydia trachomatis/pneumoniae and Toxoplasma gondii were evaluated and analyzed with Fisher's exact test. We found a significantly higher rate of TS patients with elevated antibody titers against Chlamydia trachomatis (P = 0.017) as compared to controls. A trend toward a higher prevalence in the Tourette's group was shown for Toxoplasma (P = 0.069). In conclusion, within the TS patients a higher rate of antibody titers could be demonstrated, pointing to a possible role of Chlamydia and Toxoplasma in the pathogenesis of tic disorders. Because none of these agents has been linked with TS to date, a hypothesis is that infections could contribute to TS by triggering an immune response. It still remains unclear whether tic symptoms are partly due to the infection or to changes in the immune balance caused by an infection.

PMID: 19890596 [PubMed - as supplied by publisher]