Re: where to start with PANDAS testing

[Guest guest]

For the strep titers, you'd get a ASO-titer and D-nase B titer test. Ask the

doctor/laboratory to give you a numeric result – not just positive or

negative. Anything above the lab's normal range should be quantified with a

specific numerical value.  You need to keep in mind that you can still have an

active strep infection and PANDAS without raised titers. You can

find references to research that supports this on the pandasnetwork.org

website (along with other great info).

 

Also, it's a good idea to get a thorough immunilogical work up, including titers

for mycoplasma pneumanaie; Ebstein's Barr Virus, Lyme Disease

IgG – subclass 1, 2, 3, 4

And, IgA and IgM

 

Finally, there is a researcher at the University of Oklahoma, Dr Madeleine

Cunningham who is very well respected and is trying to develop a reliable

diagnostic test for PANDAS.  She is researching  a measurement of camkinase II

in the blood, which is showing enormous promise.  She will run the test for you

if you suspect PANDAS. You can call the lab at .  She will mail a

kit to you to take to a local lab for a blood draw and then mail you the results

several weeks later.  They request a $200 payment to cover the cost of the kit

and shipping and handling.  I do believe the lab will be closing very soon, and

then opening again in the new year.

Peggy

Subject: where to start with PANDAS testing

To:

Date: Thursday, November 12, 2009, 2:21 PM

 

I'm following the PANDAS questions and wondering if I should have my 12 yr. old

ds tested for strep antibodies. WE see his psychiatrist next week for a med

check and I will mention it to him. What tests would I even ask them to run and

how would we interpret the numbers? We are in the middle of North Dakota, i

don't know if anyone around here even knows about PANDAS.

Thanks,

Becky from ND